A ClusterHead's Life

A New Video

2011-04-02T00:57:00.000-07:00

A fellow chronic cluster sufferer recently posted a new video to his Youtube channel. His name is fittingly "ClusterHeadSurvivor". By the sounds of it, he will be a good person to get in contact with. Hope he doesn't mind me saying so.

The video is a first person account of life as a chronic sufferer. It all sounds eerily familiar. Definitely a video worth passing around. He has entitled his documentary "Cluster Headache Ontario Canada Me". Enjoy below.

Paul

An illness is like a journey into a far country; it sifts all one's experience and removes it to a point so remote that it appears like a vision.
-Sholem Asch

Children with Migraines

2011-04-01T16:55:00.001-07:00

A study from the United Stated1 suggests children over the age of 6 who suffer from migraines with aura have twice the likelihood of having a hole-in-the-heart. Also known as patent foramen ovale

The story can be found at the BBC entitled Migraine heart link in children.

Paul

Children begin by loving their parents; after a time they judge them; rarely, if ever, do they forgive them.
-Oscar Wilde

It Sure Has Been Awhile

2011-02-07T20:30:00.000-08:00

After little more than a 9 month break I have decided to start posting again. Not sure as to what kind of frequency yet. Much like a Cluster Headache cycle, it will be taken one day at a time. The reason I stopped was to try to free myself to do something other than talk about Clusters. When time is extremely limited and a wide variety of possibilities to trigger or make a current cycle worse, time needed to be freed up somehow. Maybe not talking about them so much would help. For the record, it hasn't.

As horrible as this sounds, the only real place I have to vent my frustrations, experiences and outright complaints is this blog. Sounds kind of pitiful does it not? But unless someone has had some direct experience with Clusters or another type of long term, intense pain they will have a hard time understanding. How could they? Some still get mad when I can't do something even though "I look fine". It doesn't help that people have a tendency to put lazy/not wanting to work and unable/can't work in the same category. The poor and disabled have always been easy targets and I am sick of bottling it up.

Over the next while I hope get back to writing. Maybe even with some regularity.

Paul

Action and reaction, ebb and flow, trial and error, change - this is the rhythm of living. Out of our over-confidence, fear; out of our fear, clearer vision, fresh hope. And out of hope, progress.
-Bruce Barton

Easy ways to help make life better...

2010-04-12T23:24:00.001-07:00

butyoudontlooksick.com is a great site for those with an illness or if you know someone with one and would like to understand what they go through better and what can be to help. One article entitled "36 Easy things that you can do to make the life of your chronically ill friend a bit better" is a brilliant insight. Here a few that caught my eye. And yes, that was a not so subtle hint :)

21. If you can afford it, hire a cleaning service to come over for the day and do a really good cleaning on the house. This is a great gift for the first day home from the hospital, and also good for when the patient is home trying to get well and is staring at all the dust piling up, but may be too weak to clean... This will help put their mind at ease...

22.) Cook dinners that are easy to freeze and defrost. When you are sick you are too tired to cook, so helping to make easy to heat meals is a wonderful treat. Put post it notes on the dinners with easy instructions to re-heat.

23.) If you are not a good cook, send some gift cards to local restaurants or take out. The worst feeling is to be tired, but also in a financial pinch due to medical bills. This helps so much.

28.) ... offer to drive him or her to do something special, but short in timing. How about a manicure, or ice cream? Something quick enough to get out of the house, but not too long to be exhausting.

30.) Send a care package... Remember how you felt at summer camp when you got a surprise package? It was so much fun to rip it open and see what was inside. Nothing has to be expensive, you can go to the dollar store and get fun little things. The idea is just to make the patient smile. Tip: I have always liked when people have written in a note “No thank you necessary.” I get a gift without the guilt of wanting to send a thank you note.

31.) Send an email. Don’t wait for the right time... It is always refreshing to hear from old friends... If you want to make the email even better, just sign it “Reply when you can, no rush.” This way the receiver gets your well wishes without having to worry about a reply.

34.) Help with regular every day tasks... in the change of seasons going through clothes or straightening your closets can be a daunting task, but if you help while your sick friend lays on the bed, then you can get the job done, feel organized and talk too.

The full list as well as great suggestions by commentators (One favourite of mine was by a Barbara Shaw's suggestion: "How about a massage or hair-styling? So many times a chronically ill person craves a personal, feel-good touch.") can be found here.

Paul

“There is nothing heavier than compassion. Not even one's own pain weighs so heavy as the pain one feels for someone, for someone, pain intensified by the imagination and prolonged by a hundred echos.”
-Milan Kundera

Neurontin / Gabapentin lawsuit Back in Court

2010-02-24T15:39:00.001-08:00

CBC News reports that Pfizer, the makers of the anti-seizure prescription medication Neurontin, generic name Gabapentin, were in a Boston courthouse this past Monday(Feb 22) to defend itself against a civil lawsuit. The article states that "... a group of claimants says Pfizer misrepresented the drugs as a painkiller and understated its risks."
According to Dr. Harry Pollett of North Sydney, Nova Scotia, "The drug may help one in four or five people who take it for chronic pain, but it often causes severe weight gain and grogginess..."
"It's a so-so drug that can be very helpful in some cases, but it's not all that helpful in a lot of cases," Pollett said.

The claimants are seeking 4 billion US.

Here is another article from BusinessWeek entitled
"Pfizer Faces Class Action in Canada Over Neurontin".

My personal experience with this medication has been, for the most part, quite positive. The drug has not lowered the frequency or severity of the attacks. Why am I on it then? Before Gabapentin, the continuous cluster cycles made my body feel very over stimulated. Just putting on a shirt felt like the fabric was coated with tiny rusted razorblades. Light sources as dull as a small candle required a pair of very dark sunglasses just to be in the same room. It got to the point where wearing sunglasses indoors was a regular occurrence. Eye plugs & some secondary cover to go over top were essential if a place was not dead silent. Currently, despite still being photo & phono sensitive, Neurontin has lowered the light & sound threshold. However, with that being said, I can't increase the dosage because of the extreme grogginess. I'm not even close to the lower end of the recommended therapeutic dosage. The sensitivity is much easier to deal with. If only I could get the side effect of weight gain. Not a lot. Just a few extra kilograms would be absolutely brilliant. But it is only one piece of the puzzle to fight chronic pain.

Paul

“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow”
-Orison Swett Marden

Absolutely loved this!

2010-02-13T14:20:00.008-08:00

This has absolutely nothing to do with cluster headaches whatsoever but defines what it means to be Canadian.

Normally I am not one for opening or closing ceremonies but since Canada is hosting the Olympics I figured why not. Whether you are pro or against the games, Shane Koyczan's poem 'We are more' made every Canadian proud! This poem hit the nail one the head of why Canada is the best country in the world to live!

This only thing it missed was how taking care of ones fellow countryman and countrywoman is not "socialist" but human. It is a RIGHT to all and not just the ones who can afford it.

Go for Gold Canada!

Paul

"A Canadian is someone who knows how to make love in a canoe."
-Pierre Burton

"In only a century and a quarter since Confederation, Canadians have shaped out of the North American wilderness one of the most privileged societies on the face of the earth. Ranking among the seven most prosperous nations in the world, Canada is rich not only in the abundance of our resources and the magnificence of our land, but also in the diversity and the character of our people. We have long been known as one of the most tolerant, progressive, innovative, caring and peaceful societies in existence."
-George Radwanski and Julia Luttrell

2010-01-21T15:30:00.001-08:00

Thought this was kind of funny. But You Don't Look Sick has an article entitled "The top ten worst suggestions commonly given to someone with a chronic illness". Some of these 'suggestions' sure sound familiar.

1)Have you tried holistic options? (many. I'll bring it back up with my doctor on my next visit, thanks.)

2) Could it be your stress? (My opinion is, it is my illness. I'll bring it up with my doctor though, thanks.)

3) Could it have to do with the altitude? (I'll bring it up with my doctor...thanks.)

4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I'll bring it up with my doctor. thank you.)

5) Have you thought about being in a trial study? (I'll ask my doctor. thanks?)

6) WOW. If I were you, I don't know what I would do. I might just kill myself. (Thanks?)

7) Have they found what is causing the problem? (no. my doctor is an idiot. I'll remind him, thanks!)

8) Have you tried hypnosis? (I'm still sick, but when the phone rings I bark like a dog.)

9) Have you googled your illness? (....no! thanks!)

10 Have you ever thought you were getting sick because you haven't wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on.....gee I lost the web site. but it's true! I heard it from Sally's cousin's sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can't believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!

Article written by Amy-Beth Maran from http://www.butyoudontlooksick.com

Have you experienced any others?

Paul

"If you know neither the terminology nor the concepts, you're ignorant. If you know the terminology, but you don't know the concepts, you're dangerous."
- Jacob M. Appel

Taking a break between attacks

2010-01-15T02:23:00.003-08:00

Well it's late and I am still tender from my 1 a.m. bout. My eye feels like the 'hot poker' broke off inside. The next one should be fun. The fragment will be pushed further in until I'm clawing furiously to remove it. Just another next in chronic clusterville.

Now there is only another hour to go till my next one. No sense and trying to go to bed. With my days and nights completely reversed. Everything seems, well, distance. Like I'm looking through someone else's eyes. Ever since I "just gave up". Not in the hopeless sense. I don't care about them anymore. Don't think it will last. Hopefully it won't stay for much longer. Being able to focus pain away is a great trick to learn. The clusters feel just as distance. They haven't lessen in intensity and yet they don't register. It is bizarre. When I have a bit more time maybe I'll write about how I focus the pain so I don't have to head bang.

But it is time to get prepared for my next attack. Would you care to dance beast? I'll lead...

Paul

Melancholy sees the worst of things,—things as they may be, and not as they are. It looks upon a beautiful face, and sees but a grinning skull.
-Christian Nestell Bovee

Happy New Year

2010-01-01T13:25:00.007-08:00

Did everyone have a good time celebrating New Years? For myself I was without a cluster so it was good for me. That made the night better than any party on Earth. May you all have a great 2010 and be cluster free! Goodbye 2009.

Paul

The Old Year has gone. Let the dead past bury its own dead. The New Year has taken possession of the clock of time. All hail the duties and possibilities of the coming twelve months!
-Edward Payson Powell

Part 2

2009-12-30T14:35:00.001-08:00

One of the worlds foremost experts on cluster headaches, Dr. Goadsby, speaks about clusters in this 8 part video. Each part is about 9-10 minutes. The sound isn't the best but it is still worth a look.

Part 1:

Part 2:

Part 3:

Part 4:

Part 5:

Part 6:

Part 7:

Part 8:

Paul

"It is not hard to learn more. What is hard is to unlearn when you discover yourself wrong."
~Martin H. Fischer

Some more videos of Cluster Headaches: Part 1

2009-12-29T18:42:00.000-08:00

Here is Part 1 of a combination of videos about cluster headaches (suicide headaches). There is a documentary, a news story, explanations and clusters attacks from around the world. No matter what part of the world we live, we all must do battle with the beast.

If someone mentions that "they get headaches too" or think the pain levels can not be "too bad". Show them a few videos and see if they are able to watch the whole attack. My guess will be that they won't be able to. Heck, even as a suffer with clusters nearly everyday, I still find it hard to watch others in so much pain. It sure gives an insight as to what our friends & loved ones have to see. Is it no wonder people tend to distance themselves from us. Wish I would have comes to terms with a little sooner.

Please be aware the videos can be hard to watch. If you are not a suffer, remember that cluster headaches are as bad as they look. They are nicknamed "Suicide Headaches" for reason.

A very good short documentary entitled 'Living with the Beast':

Information about Cluster Headaches:

Cluster headaches in the news:

Cluster Headache attacks from around the world:

Italy:

Canada:

Australia:

Netherlands:

California:

Unknown:

Do you have a video of your or someone you know during an attack and would like to bring attention to this affliction? Please send me anemail so it can be added to the growing collection or post the link in the comments section.

Paul

"The aim of the wise is not to secure pleasure, but to avoid pain."
-Aristotle

Happy Hallow's Eve!

2009-10-31T00:01:00.001-07:00

This has to be my favourite holiday. Kids going door to door in costumes that most have spent days deciding on. The teenagers (and some adults ;) lighting off fireworks and party into the night. And finally children, much to their parent chagrin, eating the spoils of their bribes not to 'trick' their neighbours.

Everyone have fun and not matter what tricks you play, make sure both you and your 'tricky' are safe.

Happy Halloween!!

Paul

Nothing on Earth so beautiful as the final haul on Halloween night.
-Steve Almond

So Pain Makes us Old? No Kidding!

2009-10-29T17:01:00.000-07:00

A study published by the Journal of the American Geriatrics Society has shown that "24% of the 18,531 people surveyed -- had functional limitations roughly equivalent to those of a person two to three decades older". Now granted this study had nothing at all to do with cluster headaches. However, it does go to show that pain does significantly impact the way we live and feel. This might seem like a no brainer for those of us in pain. But for those around us who can not come to terms with the impact it plays in our lives this might help them on the road to better understand how we feel. Betrayed by our bodies and then told to "get over it" or "we all have pain" and so on. Hopefully when we say we feel older than we are at least now it is not "just in our head".

Part of the reason, at least in my case, for feeling much older is that pain brings on so many negative emotions. We feel guilt at burdening our love ones. Our self-esteem slowly dwindles as we loose our independence. Anger and frustration that was never part of our character creeps to the surface. We stop laughing and going out for fear that one small trigger will put us through 6 weeks of hell. In time all that seems to remain is the negative aspects of our personality. Yet, those fleeting moments of enjoyment and comfort from a love one can make it enough to go on to keep fighting and never give up!

Paul

"There is no pain so great as the memory of joy in present grief."
-Aurelius

Frustrated... FRUstrated..... FRUSTRATED!!!

2009-09-12T15:15:00.000-07:00

I am sick to death of the toll that chronic cluster headaches have done to me. Physically, mental and how those around me think of who I am. Some days I think the world be better off without me or at the very least pack up and move to some remote local where I can no longer be a bother or as someone described me last night "a nuisance". Yet another instance of not having the understanding to differentiate between an individual's actions and just how chronic cluster headaches tend to slowly strip away one's control is much faster than I would like to admit.

The other night there was a celebration of my sister's birthday. Normally I do not attend events that have more than one trigger. Ex. schedule change, loud music and so forth. As time went on the pain became so vicious that I could not stop my eyes from pouring out tears. Eventually the pain subsided and was left with the euphoric affect from which can only come from severe pain. The body's pain suppressants work well just not well enough. But by that point I had overheard identifiable individuals (voices tend become that much louder when they drink) saying I was a nuisance and I should have known better. Ironic considering that I tend to get grief if I avoid outings that will cause others to be affected by my pain. Right now I just want to scream till my lungs burst and disappear to part unknown.

Paul

I reached for sleep and drew it round me like a blanket muffling pain and thought together in the merciful dark.
- Mary Stewart

13 Things You Don't Say to Someone with Chronic Pain

2009-09-05T15:30:00.000-07:00

I came across a site that has various types of clothing with expression for those of us in chronic pain. Some of you may have heard of CafePress. Their is a section dedicated to us who want to express themselves without having to say a word ;)here . The more we speak out, in one form or another, the less stigma will hopefully be attached to those of us who "Don't look sick."

One of my personal favourites from one of their line is the "13 Things You Don't Say to Someone with Chronic Pain" quote.

1. You don't look sick.
2. Maybe if you just got out more.
3. You can learn to live with it.
4. You just have to tough it out.
5. It's all in your head.
6. You're just having a bad day.
7. This will pass.
8. Just get more exercise.
9. It can't be that bad.
10. It must be neat not to work.
11. Just be more positive.
12. It could be worse.
13. There's people worse off than you .

Don't all of those statements sound familiar? Check them out and let the world know what we think!

Paul

"You can turn painful situations around through laughter. If you can find humour in anything, even poverty, you can survive it."
-Bill Cosby

Ever Wonder ?

2009-07-16T07:12:00.001-07:00

Ever wonder how our lives would be with the pain of clusters headaches? Lately this is all I seem to think about. One minute loving life, had a high paying job, good friends, loving relationships, personal freedom and a beautiful daughter then SMACK! A brick jump in to my path( Figuratively of course ) leaving me left to feel one of the most painful, non-malignant, chronic disorders around. At that point my life stop and in some areas I started to slip backwards. No matter how hard I tried not to let it rule my life it wins more times than not.

Now most of the people who were in my life when my hell began are, for the most part, are no longer in my life. Some say that 'if they truly cared they would not have left'. Now in some cases this is likely to be true. But in others, who could blame them? Could you handle seeing someone you cared about being repeatedly tortured day after day? No matter how much one cares the nature or the beast will break them down over time.

How would I have spent the last 7-8 years? Would I have continued to work in the fields of computer security, programming or networking? Or maybe I changed careers all together. How are about back packing across Europe or the world for the matter. Would I have been happily married by now? Have more kids? Or go down the path of a 'Lone wolf'? I still can do these things but it would take a very special someone to do that. Maybe one day I will be able to continue on with a life without over-powering pain till then I will just have to grasp hold of the good moments.

Paul

He who has a why to live can bear almost any how.
-Friedrich Nietzsche

Changed Doctors

2009-07-06T19:40:00.000-07:00

Well I finally did it. I went back to my old GP. This last year has several sucked for me. Hence the lack of posts. When I moved to this new I figured "what the heck let find someone closer. That will make my life easier and stop me having to rely on others." Well, needless to say that didn't work out. He was a young guy so I thought he might have some new ideas. Boy was I mistaken. First thing he did was up every medication to the point I was very, very worried I was going to wind up dead. In all fairness, he did try but was way over his head. A warning sign went off ( and I should have listened to it ) when he didn't want my past history. In my opinion, for complex case this should be a must. No sense redo everything but that is what happened to me. So now I'm back and hope to writing more.

Paul

Reason often makes mistakes,
but conscience never does
- Josh Billings

Happy Canada Day

2009-07-01T19:55:00.000-07:00

Happy Birthday Canada! You are looking wonderful! Have fun and be safe.

Paul

Capsaicin for Pain Control

2009-03-04T11:37:00.001-08:00

An article at Science Daily about how Capsaicin can be used to combat pain. According to the article Capsaicin cremes are "commonly sold over the counter as effective treatment for a variety of pain syndromes, from minor muscle or joint aches to those that are very difficult to treat, such as arthritis and neuropathic pain." I had heard some individuals have had some success with it to lessen pain. Besides it won't hurt to try.

The directions for creme I picked up says to uses 3-4 times a day with a burning sensation "being observed with less". I can definitely say it does burn! Likely this was amplified by my sensitive skin. Others have not had much issue with the creme in that regard. As for helping with my cluster pain it did lessen pain intensity somewhat but for me the burning sensation was too much for my skin to handle. It did work wonders for my joint & muscle pain but around the ocular region it was too hot for too long for me to endure. Has anyone else tried the creme or capsule ? Did the capsules work better? Worse? Did it trigger a cluster? Put it off?
Lets hear your thoughts in the comment area.

The article is entitled "Hot Chili Peppers Help Unravel The Mechanism Of Pain"

Paul

Do you know the difference between education and experience? Education is when you read the fine print; experience is what you get when you don't.
-Pete Seeger

A Letter to People Without Chronic Pain

2009-02-01T08:39:00.000-08:00

I can across this open letter on a site that I should have bookmarked. If any one knows where it came from let me know and I'll post the appropriate link to the site.

Letter To People Without Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and it’s effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those of you who wish to understand…
…These are the things that I would like you to understand about me before you judge me…

Please understand that being sick does not mean that I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I don’t seem like much fun to be with, but I’m still me—stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy, that’s all. It doesn’t mean I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say,
“Oh, you’re sounding better!” or “But your looking so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases
You’re either or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable”, and so on… it applies to everything. That is what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible )for many it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!’ or “Oh come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short period of time can cause more damage and physical pain that you can imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down/stay in take these pills now, that probably means that I have to do it right now- it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure for me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well.
Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked we would KNOW.
It’s defiantly not for lack of trying. If, after reading this, you still feel the need to cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. A matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and accept me as I am. I know that you can not literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.

In many ways I depend on you – people who are not sick. I need you to visit me when I’m too sick to go out… Sometimes I need you to help with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know I asked a lot of you, and I do that you for listening. It really does mean a lot to me.

AUTHOR UNKNOWN

Paul

Happy New Years!

2008-12-31T20:21:00.000-08:00

Happy New Year my fellow demon battlers! Let this be a year without pain or cluster attacks.
But before I sign-off my last post for 2008, I came across an article which the "FDA is ordering a Warning for Anti-epileptic Drugs About Increased Risk of Suicidal Thoughts and Behaviours". The medications included are also "used to treat psychiatric disorders, migraines, and other conditions."
Suicide Risk Warnings for Epilepsy Drugs. Scary thought. Having epilepsy this is a bit of concern for me. The above article gives a list of the medications that are required to have the warning as well as more in-depth information. As always talk to your doctor and pharmacist about your options. I hope this benefits others.

Wishing everyone the best in 2009!

Paul

When we remember we are all mad, the mysteries disappear and life stands explained.
-Mark Twain

Merry Christmas!

2008-12-25T00:48:00.000-08:00

I hope you have a safe & joyous time this holiday season!

Paul

2008 is Coming to a Close

2008-12-18T15:43:00.001-08:00

I want to thank all those who have given me your support since I started writing about my experiences with clusters headache and especially the emails & messages I have received as of late. It has convinced me to continue on with the site and hopefully expanding it. One of the changes I would like to add to the blog is to maybe invite other cluster headache sufferers to post your experiences as well. Also, if there is interest, having a section just for our supporters to write about what they go through, how they deal seeing someone with clusters headaches, what helps you etc.

Our supporters are some of the most amazing, unwaivering individual one can ever hope to meet. Whether if it is our physician, family, friends, spouses, lovers etc... they are the ones who, when looking back after an attack or a cycle of cluster headaches, we can honestly say that we might not have made it with out them. On behalf of myself and anyone who has ever had an attack, let me give you a heart-felt thank you. The admiration I have for you is beyond words. Once again THANK YOU!

Paul

A loving heart is the beginning of all knowledge.
-Thomas Carlyle

Goodbye Summer, Hello cluster season!

2008-10-08T06:13:00.000-07:00

This past summer has been a bizarre one for me. Clusters have been fairly mild in intensity compared to other summers but no less frequent. Likely one of the reasons for the lack of pain was one of my medications would not stay 'stuck'. My new city seems to have been plundered by one of two generic makers. With the other one requiring a 'special order'. Originally this was normally 24-48 hours. So being able to pick it up when I felt well enough to make the journey was not an option. After a good many berates by both myself and my doctors the pharmacists finally believed the issue was with the medication and not how it was being used. The stupid part about this is every one of the Pharmacies I dealt with said that my complaint was extremely common for that particular brand. I wish I was told about this at the beginning instead of being told to either 'just use tape' or apply a new one. According to this current pharmacist, the type does not matter. Despite the fact that if the patch can not 'breathe' moisture tends to build up underneath thusly separation between the patch and skin. Of course if this happens there is no where for the medication to be absorbed. No worries though. No one can know everything about their particular profession.

Paul

For the first time...

2008-07-19T17:42:00.000-07:00

With my mood down to an all time low, it reminds me of my first few months of attacks before it was known what the heck was happening to me. Now, for whatever the reason, I have become ever increasingly frustrated with aspects of 'my life'. More along the lines of wanting more than what I currently have. But most people feel the same way about various points of their lives. What I guess I am saying is that I want some sort of normalcy. An extended time without pain. Maybe being able to work, go to back to school or keeping plans just once so the guilt and frustration stops building. Definitely not the most pleasant sensation on top of the pain that I can do nothing to stop.

There certainly is an ever increasing 'Why me' syndrome building as each day passes even without an attacks. I truly hate it! Sometimes I just want to run faster and faster. Screaming louder & louder as my legs turn to jelly and my throat starts to bleed raw as the screams grow rasper from the of agony. Who knows, maybe that would work. Exercising isn't helping as much as I had hoped but the only thing to do is to keep at it. Right now, reading & writing as my main outlet. Drawing with the charcoal & pastels that my Granny picked up for me as another outlet even if it is a much smaller outlet. If I had the smallest mouse hair of artistic talent it would be kind of nice or at the very least have some idea what I was trying to put on my sketch pad. Still, it is an outlet just the same. Lucky for me I can use Photoshop.

All I want right now is to be able create something that I am good at. Currently, to learn a new skill is very, very tough. Despite scribbling mountains of notes and repeatedly re-reading a paragraph for the 40th time, nothing will sink in. Accepting that my mind no longer works as well as it once did when it comes to retaining knowledge or to think abstractly is something I have been working hard to alleviate for the past 5 to 6 years. Little by little it would seem like I lose more as each cluster cycle passes. Is this true for every cluster sufferer? One day will there will be nothing left of who I once was, who am I and what will be left of me?

Paul

Any idiot can face a crisis - it's day to day living that wears you out.
-Anton Chekhov

Was it a Migrainous Stroke?

2008-07-09T17:37:00.000-07:00

The past several months my cluster headaches have been as bad as I can recall from recent memory. There have been very few days that the clusters have allowed me to have a full night's sleep. Either I've been rolling around with an attack or too uncomfortable from its lingering affects. Needless to say the thought of sleeping for a week straight brings a smile to my smile, if only it were possible. Right now a solid 8 hours would be pure euphoria at this point.

A little over a week ago, after several days of hell, I woke up with almost zero sensation in 80% of my left hand and almost no strength in it. The act of being able to grab an item was nonexistent. After a couple of days with no change in the situation I finally headed off to the Emergency Department of the local Hospital. After the usual long wait times the Dr. made it to my bedside. After asking a few question and without a single test performed he informed me that I likely had a stroke but because I waited there was not a lot that could be done to know for sure. He said it was a possibility I could have had a Migrainous Stroke (Link) (first time I have heard a Dr. admit that migraine can cause a stroke) because of my history with cluster headaches & the long held family tradition of migraines. Most of my family has them to one degree or another. Though I was surprise he thought it was likely a full blown stroke instead of something like a Transient Ischaemic Attack (Link Link Link)

I thought a migrainous stroke seemed unlikely for the simply reason that I haven't had a migraine is a very long time and definitely not within the last week. The thought that the cause could be from a stroke spooked me a bit is an understatement. Not from the idea another one could cause my demise but instead picturing myself lying in a long term care home with tubes coming out of every place imagineable and the only remnants of me is a lump of matter that used to be my body.

He phoned my Neurologist who had me come to see him at another Hospital. After my brother & his girlfriend (I am in both of their's debt) mercifully drove me to the closet major Hospital. Thankfully the wait was minuscule and was lead back to a private bed by an overly excited male nurse. He should think about cutting down the caffeine a tad.

A few minutes later the Neurologist showed up. He kind of reminds me of Ben Stein in appearance. Granted it probably not the best person to be compared to but after all he just LOOKS similar to him in my own personal opinion. Aside from that, my Neurologist is a great guy & am extremely pleased he is so diligent when it comes to my care. Now back to the story. After quite a thorough neurological examination he thinks a pinched nerve in my neck is more likely the culprit. He said that the odds of it being caused by a stroke of any sort was around 20% and will be doing some follow-up tests to help rule it out and of course help to find out the what happened. Needless to say my shoulders dropped a mountainous weight upon hearing the news.

So that is where I am at the moment, waiting for a CT scanner & also a test called an Electromyogram or EMG. Hopefully the result will come back positive with something so a stroke of any sort can be completely ruled out. Till then I am doing my best to get my fine motor skills and strength back into my hand. It seems to be getting better slowing. One day at a time.

Paul

YouTube has video about an EMG. It shows the procedure being perform. Quite intriguing. Well worth a watch.

A New Bundle of Joy has Arrived!

2008-06-21T17:27:00.000-07:00

This morning my kid sister gave birth to a beautiful baby girl! She is telling everyone that this will be her last one. How about one more? That way they can pair off ;) Congratulations Yvonne and Kevin! She is lucky to have you two as her parents.

Paul

The only thing worth stealing is a kiss from a sleeping child.
-Joe Houldsworth

Blood's thicker than water, and when one's in trouble
Best to seek out a relative's open arms.
-Author Unknown

Massive Seizure

2008-06-15T23:39:00.000-07:00

Last night, roughly, I had a huge seizure and woke up hours later. When I came around, there was a bite mark on my tongue and my lip was fat. The next 12 hours or so were spent recovering. It is amazing just how much energy is sucked out of oneself from a seizure. Not to mention the mess from the things I was carrying. My new place has hardwood floors instead of soft apartment carpet so the joints tend to take a bit of a beating on the fall. Could have been worse. At least I didn't bash my head into anything. Hitting it into a corner probably won't be a good thing. On the plus side, I'll be able to see what is causing my head to hurt ;) This happens from time to time. Usually when the pain is horrendous for too long. The scary part about this one was that no one was around to check that I wasn't hurt. But I guess that's life.

I want to thank everyone for all of support over the last while. It has meant a lot and will be replying as soon as I can muster up a bit of free time and energy.

Paul

I value the friend who for me finds time on his calendar, but I cherish the friend who for me does not consult his calendar.
-Robert Brault

Happy Father's Day!

2008-06-14T17:57:00.000-07:00

I wanted to wish all the Dads out there a great big Happy cluster headache free Father's Day! Have a great time and wish you all the best!

Paul

Long time no post

2008-06-07T23:19:00.000-07:00

Ok, it has been a tad under 6 months since I last posted. In some ways it has felt much, much longer. Cluster cycles have a way of drawing out time. This round went to the clusters and what a battle it was. Wave after wave came. When one cluster bout finished another one began. Barely giving me and strength or sleep to dealing with. At that feverish frequency it can be hard to distinguish one cycle to the next. To top it all off, my main supporter after all these years can no longer stand to deal with them. Supporters who care & empathize, who see the pain we endure, are rare, special breed. If you have one don't take them for granted.

Paul

It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.
-Julius Caesar

How many weeks has it been?

2008-01-18T12:05:00.000-08:00

Every have one of those cycles where you aren't exactly sure when the 'new' cluster headaches began? This is probably more of an issue for a chronic sufferer as apposed to those who have a cycle or two a year. How can I not know when a new cycle starts? Who knows exactly. In the beginning, I find able to deal with the pain levels better. As the days turn into weeks the life is sucked out of me. Like a slow leak. In time the container will be empty.

I think this cycle started sometime around the beginning of December so the end should be, hopefully, on the horizon. At the start of the 4th to 5th week, especially with higher intensity attacks, is when I begin to wear down. The lack of continuous, deep sleep is definitely a major factor. The irritability that is unique to pain certainly does not make matter any easier. Currently I am on edge for most of the day. Luckily I am still able to "bite my tongue" as it were. Right now I am at the point where the pain has ground me down to where I feel each attack more. Trying to 'focusing away the pain' becomes harder and harder. Still ice packs are my closest allies. With a bit of luck there should only be at most a week. Lets hope the one afterwards with be a little less intense.

Paul

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.
-Lance Armstrong

FDA Renews Fentanyl Patch Warning

2008-01-11T17:09:00.000-08:00

Published on December 21st, 2007 by MedPage Today.

Over the past few years, a number of deaths a have been attributed to the Fentanyl Patch. This form of medication is used for individuals with SEVERE chronic pain. Most notably cancer and more recently non-malignant pain sufferers.

Fentanyl is an extremely potent opiate. When misused ex. not taken when in accordance with the scheduled times, it can be fatal. Never take any medication, especially one prescribed 'as one feels like it'.

From the article:

"Two years after the FDA warned that fentanyl transdermal devices were linked to 120 deaths, patients are still dying because physicians still misprescribe the patches and patients still misuse them..."

"Fentanyl patches, he said, should only be used in patients who are opioid tolerant. Using it in patients who have not yet developed opioid tolerance was likely to cause serious respiratory depression."

The patients who misuse are one of the reasons as to why it can take years for one to be able find a sufficient decrease in their pain levels that allow for chronic, non-malignant pain sufferer a decent quality of life. If an ailment will not stop then the next best thing is to have pain levels to the point where they can be controlled. At the very least allowing us to perform daily tasks and to be with our loves in ways other than on a 'supporter / dependent' basis.

Link

Paul

Drugs are not always necessary. Belief in recovery always is.
-Norman Cousins

Research vs Marketing for Prescriptions

2008-01-03T23:58:00.000-08:00

CTV.ca is running an article entitled Drug-research spending second to marketing: study

Marc-Andre Gagnon and Joel Lexchin of York University in Toronto have published their study entitled "The Cost of Pushing Pills: A New Estimate of Pharmaceutical Promotion Expenditures in the United States" in the journal "Public Library of Science Medicine". The analysis found that U.S. drug companies spent $57.5 billion on promotional activities in 2004 alone. Compared that with the $31.5 billion on pharmaceutical research.

According to Lexchin "In the United States, there is one sales rep for every five doctors. That is a lot of money,".

From personal experience, this does not come as much of a shock. A seemingly increasing number of doctors offices I have visited are plastered with posters, models, diagrams and so on. All with the name of particular medication and the company stamped on it. I'll bet more than one patient has asked what the medication on the poster does or how it works. These offices are the ones I am wary of. 9 times out of 10 something will be repeatedly 'suggested' or wants prescribed something 'new'. Ex. antibiotics for colds. That sort of thing.

Kent Holtorf, MD at ImmuneSupport.com wrote an article in the Spring of 2007 entitled "Why Doesn't My Doctor Know This?" that explores partly, that very idea.

Here is a snippet:

"There is clear evidence and concern that published research is clearly tainted by whomever is the financial sponsor of the study.

- A study published in the Journal of Psychiatry (and later discussed in the May 2006 edition of Forbes magazine) states that the most important determinant of the outcome of the study is who paid for it.

- An analysis in the Archives of Internal Medicine reviewed 56 studies of painkillers - and not once was the sponsor’s drug deemed inferior. In addition to reading the conclusion of the study, a physician must read the entire study and review the data with a critical eye, which is rarely done."

Doctors more and more are being treated like drug dealers. A number of offices have a policy of not prescribing certain medications, for obvious reasons, like opiates, tranquilizers, sleeping aids and so on. With individuals taking advantage of a doctors caring nature by using them as dealers. Doctors are caught in the middle. Damned if the do and damned if they don't.

This makes it almost impossible for patients who genuinely have legitimate ailments. We are constantly bombarded with ads on the television, radio and internet saying I should "talk to my doctor", as one ad puts it, about one drug or another for any type of discomfort.

With all the billions being spent on treating symptoms, maybe one day cures will be found. The majority of the medicines we take for symptomatic relief. Off the top of my head, I believe the number is some where between 65-75%. But I have a feeling it is higher still.

So called "Promotional Activities" have a place in the medical system, to a degree. Sometimes doctors will hand out samples when a medication's cost in beyond what the patient can afford or to see if it helps.

It is all well and good to blame the drug companies for what ails a health care system but don't forget, the patient still has a choice as to whether prescription or over-the-counter medication is the course of treatment they wish to pursue.

One worry I have is that if doctors, are being bombarded or persuaded half as much as the patients that the information being rendered to them about 'drug X' performing better than drug 'Y' is from the manufacturer of 'drug X' how can we trust the information is impartial.

***Always discuss all your options with your health care practitioner, doctor, pharmacist and so forth. If you are not happy with them or feel they are being influenced in so way, it does not hurt to get a second or third opinion. Most importantly, do as much research as possible.***

Paul

The doctor has been taught to be interested not in health but in disease. What the public is taught is that health is the cure for disease.
-Ashley Montagu

Happy New Year's Clusterheads!

2008-01-01T21:47:00.000-08:00

Welcome to 2008 everyone! This year has flown past. I decided not to bother with resolutions this year but of course there are things that would be nice to strive for. Like more pain free days. If New year's Eve is a sign of things to come then I am in big, big trouble. The cluster headaches had drained me so completely that I was asleep by 5 pm. Woke up multiple times through out the night with attack after attack. They were not overly painful, as far as clusters go, but just enough to keep from a good nights rest. But that is life. No sense dwelling on it.

Still I am more hopeful than I was at the start of 2007. Maybe this is the year that cluster headaches will stop completely for one, and hopefully a great deal more, of us. As long as we have the support of other cluster sufferers and the people who support us unconditionally we will be alight.

Wishing everyone the best and most pain-free year to date!

Paul

Life itself still remains a very effective therapist.
-Karen Horney

Happy Holidays

2007-12-21T07:47:00.000-08:00

I want to wish everyone a Happy, cluster headache free, Holiday! I will, with a bit of luck, write with more consistency when the holidays are over. Till then, remember alcohol will only make your cycle worse! Have fun and spoil the kids! This time is for them.

Paul

Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice.
-Dave Barry

A Promising, Fishy Painkiller

2007-12-07T18:58:00.000-08:00

Back in 2003, a captivating article at Wired.com about a small Vancouver-based Pharmaceutical company called Wex Technologies Inc. who are looking to produce a potent painkiller derived from the blowfish called Tectin.

From the article:
"The company says Tectin differs from other painkillers in that it doesn't have the same side effects as morphine and its derivatives, doesn't interact with other medicines and is not addictive. It is up to 3,200 times stronger than morphine."

In August of 2007, Wex Technologies published a study entitled "An Open-Label, Multi-Dose Efficacy and Safety Study of Intramuscular Tetrodotoxin in Patients with Severe Cancer-Related Pain." The report is in both Pdf and html.
PDF
HTML

I just noticed that according to the company Tectin™ has been cleared for a severe non-malignant chronic pain trial in Canada. Maybe this could help individuals like myself who have not responded well to the usually regiment used to treat clusters. Not to mention anyone else who live in a constant of agony. It would sure would be nice to have an effective painkiller. Here's looking at hoping!

Note: I am not affiliated with any of the afore companies or product(s) mentioned.

Paul

The goal of science is to build better mousetraps. The goal of nature is to build better mice.
-Unknown

Finally, I'm officially over my 6th Year !

2007-12-05T17:39:00.000-08:00

My how time flies when a white hot poker is stab into ones' eye. The end of November officially concluded my 6th year of living with cluster headaches. What a year it was from a Clusterhead's perspective, of course. Besides, there was not much time for anything else. From pain-free days ( yes, amazingly there were days. Something I am not used to at all ) to a 6 month cycle.

As far as years go this wasn't the worst and not the best. I did have more days with less than my standard minimal of 4 attacks each day. The were several 'groups of days' without an attack at all. Those take me completely by surprise but am not ungrateful for. The major drawback with pain-free days are that the next round feels much worse. The body is just not used to days that don't involve numerous ice packs. Still, I'll take the 'days offs' anytime.

The six month episode was of such a fierce nature that I almost broke. Without the support of the people around me I do not know how it would have played out. What finally broke it was a dose of Demerol. Like migraines when nothing else has helped, sometimes one gets lucky and it snaps the cycle. After 6 months of daily, multiple, 8 to 10 level intensity style of attacks on the Kip Scale I was willing to try anything. Can you blame me? The amount of attacks in that time period is conservatively guesstimated at 672. 4 attacks a day. 28 days in a month. Most have more but not less. Someday I had more than 4 bouts but never had a day lower than. Scary how many isn't? One of these days I will calculate just how many I have in a year.

This was the main reason I had no desire to keep my blog up to date. Just needed some separation from the reminder of just how bad things can get. I hope to get back to posting with regularity. Thank you everyone for supporting me through my 6th year of cluster headaches as well as the 5 years prior. The 7th WILL be better.

Paul

You can turn painful situations around through laughter. If you can find humor in anything, even poverty, you can survive it.
-Bill Cosby

Been a Long Time...

2007-11-16T15:23:00.000-08:00

It has been almost 2 months since my last post. Sorry it has been so long without providing an explanation before hand. I needed step back to think of something other than cluster headaches, treatments, studies and so on. Just because I am classified as a chronic sufferer that does not mean my whole life should be focussed on them. Instead I will try to do a better job of working around them. Not the easiest of tasks. Still, there are a few articles I would like to post, starting with my next post;)

Paul

Don't be fooled by the calendar. There are only as many days in the year as you make use of.
-Charles Richards

Mistakes in Canadian Hospitals

2007-08-22T12:29:00.001-07:00

CTV is running a report by the Canadian Institute for Health Information(CIHI) that states "the chances of patients receiving the wrong medication or wrong dose was about 1 in 10 in 2005".

Other issues in Canadian hospitals include "The chances of an adult contracting an infection while in an acute care hospital are about the same: 1 in 10, while the chances of a child contracting an infection while in hospital are about 1 in 12.

Very scary. This why it is important to ask about EVERYTHING being given to you and if you are unable to talk have someone else speak for you. There is nothing wrong with saying "No" to a medication, procedure or so forth. This is your right. Report reactions of any sort to your doctor right away. Make and informed decision about your health.

Paul
The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind.
-G.K. Chesterton

Verapamil and Cluster Headache Issues

2007-08-21T22:26:00.001-07:00

A study published in the journal 'Neurology', patients who use Verapamil should be monitored frequently with electrocardiograms for irregular heartbeats. According to the article, 19 percent of patients developed irregular heartbeats while taking the drug.

The link is the original location where the article was found. Drug used for cluster headaches carries risks.

Paul
Yes, risk taking is inherently failure-prone. Otherwise, it would be called sure-thing-taking.
-Tim McMahon

The Guilt of the After Days

2007-08-07T16:56:00.001-07:00

After a really bad attack, guilt plagues me like a rock in the middle of a fast moving stream. Every so often I have a chance to breathe but for the most part I am drowning. The guilt can be as bad as the cycle. This past weekend was spent in my room cuddling with multiple ice packs.

The plans for the past long weekend were all canceled much to the chagrin of Mindy and myself. Every night we made new arrangements for the following day but even that was too far in advance. Making plans and consistently being canceled again and again because of the these blasted clusters is not fair, to anyone. This is generally the cause much of the guilt. The guilt I feel is not for what I miss through life, though that is part of it, but to how those around me are affected because of the instability of the when, where or how an attack hits. Thus, ruining even the best of days. Each time I have to say that I need to leave before the pain makes a bad situation completely outwardly unmanageable gets harder and harder.

As the situation is now I hold no ill will towards someone who decides to cancel plans with me to go elsewhere because they would much rather have a guaranteed time out . The odds of the original plan being kept are less than 25% . This is in the summer when cycles and pain are at their least for myself. The other 3 seasons have an even higher chance of being canceled.

True friends, family, and supporters are the most important treatment for a cluster headache sufferer(IMO). Without them who knows just how well sufferers would do over the years.

Paul

If I had to sum up Friendship in one word, it would be Comfort.
-Adabella Radici

It is summer, isn't it?

2007-08-06T01:05:00.001-07:00

Summer is supposed to be a time of "lobster skin", corn on the cob and walks along the beach. Also importantly to me, a time when my clusters ease enough to crack a smile or maybe even a laugh. Not this year. At least, not so far. I'm not exactly sure why the weather is so messed up. Please don't say global warming. The sun has been amazing. However, after just a few days the rain comes in just enough to amplify this cycle. Arr!!! Here I keep hoping that I have finally switched to an 'episodic' cluster headache sufferer. Not a great hope, but the idea of continuing for 30 decades more as a chronic sufferer has a way of destroying ones moral. Oh well, not much I can do to on that front. I am not looking for sympathy. Every year I am able to better control my pain levels. Here is looking at a Kip Scale 0!

Here is a link entitled The 10 Steps to Overcoming Pain. Definitely worth a read.

Paul

If you break your neck, if you have nothing to eat, if your house is on fire, then you got a problem. Everything else is inconvenience.
-Robert Fulghum

Stimulating the Occupital Nerve Study

2007-07-27T23:59:00.001-07:00

The American Academy of Family Physicians has a very detailed article entitled the "Management of Cluster Headache". The article includes details about triggers, symptoms, treatments ( for both episodic & chronic) , medications & doses, behaviour & lifestyle interventions and more.

This amazing article was written by ELLEN BECK, M.D., WILLIAM J. SIEBER, PH.D., and RAÚL TREJO, M.D. of the University of California, San Diego, La Jolla, California .

There is a PDF also available for download. Perfect for the our supporters, caregivers and those who do not understand what we go through and of course cluster headache sufferers. Well worth the time to print off a couple or two for those who want to know more.

Paul

Knowledge is of no value unless you put it into practice.
-Anton Chekhov

Illness and Sleep

2007-07-22T07:28:00.001-07:00

Ever wonder why when suffering from an illness, drowsiness it is often accompanied by fatigue? An immunologist at the University Hospital of Zurich in Switzerland by the name of Thomas Birchler and his team have "tracked down how the chemical responsible for such drowsiness works."

"The culprit is a small protein called tumour necrosis factor alpha (TNF-alpha), named for its anti-tumour properties...Mice given TNF-alpha were also less active and spent less time on their running wheels or walking around their cages — as if they were tired...This is the beginning of connecting it with genes involved in circadian rhythms."

Those of us will chronic illness know all too well how tiring a daily battle can be. This discovery is a small part of the puzzle to understand how the circadian rhythm works. The circadian rhythm regulates our internal clock. It is also involved in cluster headaches. This is likely why cluster attacks usually come at the same time every day during a cycle. I hope this will be another piece in puzzle towards a way to fight cluster headaches.

How Sickness Makes us Sleep

-Paul

Cluster Headache Videos and Clips

2007-07-13T20:08:00.000-07:00

I thought that a post filled with various videos related to cluster headaches would be a better idea than require everyone to jump all over my blog for a post which was not labelled properly. This way also allows me to provide more information on what each video contains better than just adding them as links on the side. A central area will help to locate them, as more will be added over time. If you would like me to add one of your favourite clips/films or would like to recommend one, please Email me.

My hope is that more people will be able to have a better idea of the level of pain involved once they are able to associate clusters headaches to the levels of pain we are have become all too accustom too. It is one thing to put our experiences in print and another to show someone a cluster in action. Maybe someone not cursed with cluster headaches will understand why we are frustrated when clusters are mentioned in the same pain scale as Migraines, tension-type headaches or are told that we "have the same headaches that everyone deals with from time to time". Once seen, confusing cluster headaches with any other headache is nearly impossible! They are difficult to forget from either a supporter or a sufferer standpoint. Here is the WHO's Headache Factsheet. Here is the Printable copy.

Please do not forget to post a comment/ email the individuals/group that filmed these private moments. Nevertheless, be warned, some of the following videos show people in levels of pain that no one should have to go through.

An excellent commentary on cluster headaches by Jonnymule titled "The waiting hurts almost as much!" Extremely well put together!
Running time = 1:26

“A cluster headache in action” filmed by Tony Amabile from New Castle, Pennsylvania.
Running time = 8:57

Cluster headache from down-under by a gentleman named Daniel. I was unable to locate any more information than that. Sorry.
Running time = 0:46

And finally a little humour. I am cheating a bit as this next clip is an animated skit from an old post but is still funny entitled "The Drugs I Need!”. We could all do with more laughter in our lives!

Paul

How is it that our memory is good enough to retain the least triviality that happens to us, and yet not good enough to recollect how often we have told it to the same person?
-François Duc de La Rochefoucauld

A Migraine Central Award Winner!

2007-07-07T09:02:00.001-07:00

As some of you may have noticed or heard, "A Clusterhead Rants" was awarded one of the "top 10 of the web's very best sites dedicated to Migraine disease and headaches" by MigraineConnection.com. To be included among such prestigious websites is a great honour. Not to mention being the only site dedicated specifically to cluster headaches has truly blown me away.

This site all started as a way for me to gather my thoughts through the wee hours when clusters like to strike me. Prior to this, the pad and pen was my best friend. Since I type much faster than write, I am able to release more emotions. The more I wrote the better it helped me to understand what was happening. In the beginning, very few believed that the pain was real. Opening up is almost impossible with responses like "It's just a headache", ”It's all in your headache", "You don't look in pain", "Just deal with it" and so on. This blog helped me to vent my frustration over the whole situation. Not to mention the great feedback I received from others. For that, I will be ever grateful. Thank you for taking the time to read my blog and most importantly, email or comment with ways to make life better. I hope you enjoy the site as much as have enjoyed writing.

I truly hope others will start to write about their experiences with clusters. Especially if you have a cluster cycle with great rarity. We would all love to know just how you and your support structure cope with this insidious ailment. The louder we talk, the better non-sufferers will understand our needs; with some luck help to improve the time of a proper diagnose. The more accurate the information the better chance we have of living life to the fullest and not just to survive each day.

The nine winners included with myself with a brief description are as follows in no particular order. All of which are worth a detailed read. Do not forget to congratulate them on their accomplishment!

The Daily Headache : A candid look at managing and living with headaches & migraines.
MigraineCast : The weekly podcast providing information and support about migraine disease and related issues.
Abi's Migrainous Wanderings : Wandering the vast reaches of the Internet to discover the truth about Migraine disease and expose the misconceptions.
Migraine Blog : Raise public awareness and assist migraine sufferers and their families with information, treatment options and a support network.
Her Life in a Nutshell : My experience with New Daily Persistent Headache (NDPH)...
Help For Headaches & Migraines : Writer and Patient Advocate Teri Robert's site, featuring Migraine facts and stats, doctor and clinic reviews, and fun Migraine quizzes and games.
Migraine Chick : One girl chronicling her misadventures in Migraine Land.
Weathering Migraine Storms : Have fun with the Queen-Bee while she tries, mostly unsuccessfully, to master Migraines, Marriage, Motherhood and a myriad of other things possible. Throw in an over-grown, drooling, big-headed dog, and two strange cats and you've got the makings of, uhh fun??? Definitely!!
Somebody Heal Me : News and information about Migraine disease and related health issues from a Migraineur who also deals with depression.

Paul

The rewards for those who persevere far exceed the pain that must precede the victory.
- Engstrom

Dangers of Oxygen

2007-06-13T08:24:00.001-07:00

Damn Interesting has an article about the dangers of oxygen treatment. The story is not directly about cluster headaches directly but still well worth read. 100% oxygen can be toxic. This may give cluster sufferers something to think about next time we reach for one of the few treatments that steadily works.

"It has also long been known that even at partial pressures, pure oxygen can be toxic–a fact with which scuba divers and astronauts are intimately familiar. Recent studies have indicated that the human body responds to pure oxygen, even at normal pressures, in a negative way."

Paul

Sumatriptan caused green blood?

2007-06-08T11:14:00.001-07:00

A man was admitted to a hospital in Vancouver, BC for compartment syndrome in both legs. When an artery line was inserted into a wrist artery the blood did not show the normal bright red colour. "It was sort of a green-black. ... Like an avocado skin maybe.'' according to Dr. Alana Flexman. "...the blood kept coming back as dark green instead of bright red.''

The staff at the hospital suspect the condition may have been caused by the man's migraine medication. "...the condition may have been brought on by the man's migraine medication, Sumatriptan, which he was taking in higher-than-advised doses..."

Anyone else take their migraine/cluster headache medications more than prescribed?

Here are a few links to the story.
Link Link Link

Paul

Want to see what a cluster headache looks like?

2007-06-04T03:54:00.000-07:00

The gentleman has been kind enough to allow himself to be filmed having an attack is not by any stretch of the imagination exaggerating. The pain is described as "having a white hot icepick being driven into the eye socket". Definately not a pleasant sensation. This is the reason part of the reason they have been coloufully nicknamed "suicide headaches"; a sufferer will do just about anything to allieviate the pain. Personally I do not know of anyone who has died. Unfortuneately, attempts can happen. Not because they want to die but want some relief.

I will warnyou that it can be hard to watch someone is this much pain. There is no blood, gore or violence but yet some viewers may find the images disturbing. The video below is just under 9 minutes. Please do not feel like you need to watch the entire clip.

After you finish, ask yourself if you could go through that for 15 - 180 minutes at a time with up to a dozen attacks a day over a period of weeks, in some cases, years without a day "free" from pain. Try to remember there is no cure and painkillers are frowned upon except in the most severe cases.

The reason the clip has been added is to help educate non-sufferers. I hope it has put cluster headaches in perspective. They are not "just a headache".

Paul

Few people even scratch the surface, much less exhaust the contemplation of their own experience.
-Randolph Bourne

A Great Video

2007-05-30T22:01:00.001-07:00

For those of you who would like to know what a cluster headache is like from a sufferer's point of view, a video on Youtube may help with some insight.
Worth the 1:50. Enjoy!

Paul

The more sand that has escaped from the hourglass of our life, the clearer we should see through it.
-Jean-Paul Sartre

All's Well

2007-04-30T09:53:00.001-07:00

Well, the surgery went well. No issues there. The after-effects took a couple of days to wear off because the doctor needed to use a higher than normal dose but its all good.

The clusters for the past 5-6 days have been virtually non-existent. This happened last summer too. For roughly 3 weeks I was without pain which technically knocks me out of the category of "chronic sufferer". To earn this nefarious title one has to has less than 10 days a year without pain. The fact that I have another 'break' for more than a day in less than eight months makes me wearily hopeful that I am on my way to more pain free time between episodes. With a bit of luck I might be able to tell precisely, rather than based on pain levels, when one episode ends and another end.

But I'm off to enjoy the seemingly rare sunshine. Any chance to go outside. Beats being stuck inside with an icepack taped to the forehead.

Paul

When the world says, "Give up,"
Hope whispers, "Try it one more time."
-Author Unknown

Readying myself Surgery

2007-04-26T22:32:00.000-07:00

Tomorrow I go in for a double biopsy so the last day and 'til after the procedure I have to fast. Only clear liquids for me. The operation is basic with the only issue I have with it is I won't not be knocked out for it. The main reason being the availability of an Anesthesiologist. They staff will instead be using a technique called "Conscious Sedation". I hope won't remember anything. The last stomach biopsy I was able to recall bits and pieces but it wasn't overly uncomfortable. As a personal preference I would rather be out cold. On the other hand the effects from the drugs do not usually take as long leave the body, depending on the medication used.

So wish me luck and I will post again this weekend, cluster permitting of course.

Paul

"I learned a long time ago that minor surgery is when they do the operation on someone else, not you." -Bill Walton

Trapped in a Body Without the Key

2007-04-20T07:23:00.000-07:00

Does anyone else feel this way too? Cluster headaches, as well as many other forms of lengthy illnesses have an uncanny way to cause a sufferer to feel imprisoned. At times, negative emotions swirl around my mind like a desert does to sand caught in a wind. Stinging sharply when thrown against my unprotected flesh.

Emotions like guilt from feeling like I'm a burden worth my weight in cast iron dragging others around me down. That one is probably the worst of the lot. The sense of loss from all areas of life is a far cry away in comparison.

Now the largest cause to complete the feel of isolation is the affect the medications I currently take have on me. If any one of them did not reduce pain or increase the quality of life it would be discontinued as quickly as realistically possible. Each Rx I am on has been temporarily discontinued at some point throughout the past 5 years or so and all the with a similar result. The pain or seizures increased. To have to depend on anyone or anything has never been easy for me. I doubt I'm alone in that category.

Anyhow, there is one more ailment to the through a wrench into the cogs of an already diminished machine and that is to be checked out for Crohn's Disease (again). I go for a double biopsy in a week's time. My doctors seem more concern about the problem than I do. To be honest I could care less. For me it is much like clusters in the regard that both are painful, life altering and have no cure. Bugger all, eh? ;)

Here are a couple a medical jokes to lighten the mood a bit.

The Perfect Stress Medication

This joke seems quite fitting don't you think ? :)
A distraught patient phoned her doctor's office. "Is it true", the woman wanted to know, "that the medication you prescribed has to be taken for the rest of my life?" "Yes, I'm afraid so." The doctor told her. There was a moment of silence before the woman continued, "I'm wondering, then, just how serious my condition is. This prescription is marked 'NO REFILLS.'"

Paul

The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind.
-G.K. Chesterton

Virginia Tech University's Anguish

2007-04-17T23:59:00.000-07:00

May our thoughts & wishes be carried to the families & friends of those who were injured or lost their lives at Virginia Tech University . Let us remember the fallen and support the survivors, friends, families, and everyone involved on that horrific day through their time of unimaginable need. Please let this be the last tragedy of this nature, EVER!

Take care Virginia Tech,

Paul

"Perhaps they are not stars, but rather openings in heaven where the love of out lost ones pours through and shines down upon us to let us know they are happy."

-An Inuit Proverb

Recovering

2007-04-07T07:49:00.000-07:00

This is without question one the longest time I have gone without posting. A few things have changed since then. At least, the longest and most painful cluster cycle has finally ended. Every attack was a 8+ on the Kip Scale. Still not quite sure as to why the cycle was as intense as it was. There was no reason that I could find other than dumb luck. But at least it is over and done with as far as I can tell. The change to nice weather helps every time. Doesn't get rid of it but helps.

The last couple of days I have spent catching up on 3 months of housework. Mostly deep cleaning. I have to watch about the cleaning products odours. Don’t want to go right back into cycle. Another thing I have need to watch for is over-doing it and wear myself out. It happens more times than I want to remember. The body takes a bit to get back into shape. It is similar to the guys who think they play the game of their choice without realizing a decade of more of no exercise might just cause a pulled muscle or two if thy're lucky. If I don't ease myself back into life the clusters take full advantage of my weakness and attack with both feet forward. Sometimes I forget just how much chronic pain takes out of me both, mentally and physically. Not to mention any poor wretch who has the unfortunate luck of being near me.

This post was to let everyone know I am still alive and kicking. Hopefully in the next little while posts will become more frequent and have some actually substance to them. Hope everyone stays in control the their pain.

Paul

The Drugs I Need

2007-03-12T06:02:00.000-07:00

The other day, or maybe it was a week ago, I can never tell a Monday from a Saturday during a bad cycle ( are there any good cycles?) and came across a somewhat humourous video about prescription medications over at Jibjab .Take a look and have a laugh. Parts of the song remind me of personal experiences :) Enjoy!

With some luck I can start posting again soon. Hope you days and nights are without clusters or pain.

Paul

My Pain Clinic Consult

2007-02-20T09:18:00.000-08:00

What I thought I would do is keep journal on my experience at a Pain Clinic is like. This is my second stab at a Pain Clinic. The first one was private so I couldn't afford most of the treatment. Luckily British Columbia has one of the best Pain Clinics public or otherwise. Since it is public all the treatments are covered and with a little luck I will have a new lease on life. Heck, a life is something I desperately need. I will write about what happens with each visit or day as an inpatient. If I'm admitting as an inpatient, which seems likely because they doctors I saw were very interested on how the attacks are so closely linked with the circadian rhythm ( internal clock). I have at least 4 attacks a day at 1 and 3 am/pm. The word they used was "fascinating". Wouldn't be the word I'd use for it but from a scientist I can definitely see the interest. There may be some time between posts. So post frequency will be the same ;)

After roughly a year on the wait list ( our public health care system working at peak efficiency ), last week I FINALLY had the initial 1 hour consult appointment for the Pain Clinic. For what I remember it wasn't too bad. The clusters were nice enough to keep me up most of the night before and kept the attacks frequent and painful. If this were any other appointment I would have canceled it.

By the time we arrived ( my mom was nice enough to drive me there. Thanks mom!) my mind was mush and honestly not sure what to expect . Lucky for me I had printed off some information for them . Triggers, medications that worked or didn't, different treatment successes and failures, current medications and so forth. In short my headache diary. One of the most important tools in any sufferers arsenal. It helps the doctor to better understand the overall situation and make a more informed diagnosis.

I was called into an small, cozy office by a doctor ( don't remember the names and wouldn't use them anyhow ) and motion to a rather comfy leather lazy boy recliner. At that point I noticed there were 2 other doctors plus the one who invited me in. They sat 2 facing me and one to the side. This was a little nerve racking, yet the environment was informal and relax. Now the consult began. I was literally being ask question after question from what seemed like all directions. This was the first time since this hell started I wasn't being accused, being told it was all in my head etc. They were really listening and quite concern of the low quality of life I have had for the past several years. This was probably one of the best appointments I've ever had had.

But I have to run off for now. This cycle kept me up all night and now it is just past 9 am. My body is falling asleep (yeah) so I better head off before I get my 3rd or 4th wind. But I will post more when I am rested.

Paul

The basis for optimism is sheer terror.
-Oscar Wilde

Thank You

2007-02-14T08:44:00.001-08:00

I just wanted to take the time to say "thank you!" for all the sort I have received. It is has been great to know so many people are there for me. The last couple of days have spent recuperating from the last cycle during which a hard drive failed so I haven't had much chance to to write back. I will reply in the next day or two, if a cycle doesn't hit of course. Plus I will fill you in on what the consultation appointment at a Pain Clinic was like. Thank you all again.

Paul

Stuck in Limbo

2007-02-02T00:43:00.000-08:00

I apologize in advance that this post is a 'poor, pity me' post. Part of it is from the lack of proper deep sleep. Maybe with some luck pain clinic change things for the best. If things don't get better there I don't know what I'll do.

I hate to feel this way. Some days it would be nice to talk with someone is person that would hold me while I to them about this. Maybe even cry along. Ever since the 5 year anniversary of the start of the what is seemingly an never-ending cluster cycle, my mind has been full of "what if", "what next" and "why me" scenarios. In a little over 6 weeks I will hit the ripe age of 30, just having passed the supposedly peak of physical health. A huge chunk of life was and still is being taken away from me. I mean is it not 5 years of 'on and off' pain where I can at least stand on my own 2 feet from time. Maybe to be a good boyfriend, friend, employee or son. None of which I feel I am and have not really been assured otherwise.

Realistically I have become none of these. Going from someone who was general happy with 90% of life. Right on the verge of making a name for myself and being proud of who I am. All the while enjoying the scenerary the road of life was showing me. It's clichè I know but I was confident on the direction headed before me. Now 5 years are just GONE! With very little personally to show for it. I don't know what to do anymore. What direction I should I head. The realization of the likelihood of working a steady or being with someone who be general proud of a 'stay-at-home' boyfriend is not likely. If I were to work again my boss would have to be the most patient, considerate and understanding person who has ever lived.

The only thing I can think of doing is to try to find happiness in the smallest pieces. I know what your saying, "Duh! What took him so long.". To answer the question I really don't know. A lot of time and energy has been spent hoping & trying, trying & hoping to help the people I care about truly understand what I go through so they have clear inclination on where my mind and body are right now and will likely be the remainder of this life. The ones I truly care about have to, in my mind, be crystal clear on what it will take apart of each others' lives. I am likely wanting to much from my loved ones and the only way to stop the guilt I have about holding them back or making their lives' miserable is to be by myself until the demon calms down enough for me to be more than a recipient of seemingly unstoppable levels of pain.

Paul

Where would you rather be?
Anywhere but here
When will the time be right?
Anytime but now
The doubt and the fear I know
would all disappear
Anywhere but here

- Unknown

I'm in!

2007-01-23T14:13:00.001-08:00

After a year on the wait list I have been accepted into another pain clinic. This one is non-private, hence the year long wait. This clinic is also located in a hospital. Secondly, I have a decent chance of being accepted into the inpatient program. The initial appointment will be an hour long consult. I'm going to have to find locate my headache diaries because the last 5 years is nothing but a blur. All I can hope for is that this time the clusters will be more responsive than my last experience at a pain clinic. It wasn't there fault by any means. Just sucks to have unresponsive pain.

I am bit nervous, even hesitant about going because ever time someone new tries something new the normal result is weeks of agony and then going back to the regiment I'm on now. Granted having a group approach is much better than one doctor referring to another and then assessing the diagnosis.

Paul

Happy New Years!

2006-12-31T15:32:00.000-08:00

Wishing you all the very best for 2007! May they be more pain-free than the last! :)

Paul

Happy Holidays!!!

2006-12-22T21:23:00.000-08:00

I will likely be away from the internet a few days so just in case I don't get the chance I hope everyone receives the best gift of all, to be pain-free and rid of clusters, migraines or any form of pain, chronic or otherwise.

After the season I plan on posting on a more regular basis (well as regular as a cluster cycle will allow) with more information and and articles. The best way I can help others is to pass on the knowledge that I've learn since everything began.

Hope your holidays are pain and stress free! As the immortal Red Green would say, "I'm pulling for you. We're all in this together."

Paul

What's in the past Nickel?

2006-12-20T22:24:00.000-08:00

Well this has been the longest I have ever gone without posting since I started 'A Clusterhead's Life' a couple of years ago, give or take a few months. I would like to say thank you for all the comments and emails I've received. They are much appreciated despite my lack of reply. I will try to get to them over the holidays. Promise. There are a couple of reasons as to why the lack of posts or replies lately.

Firstly, at the end of November there was an anniversary of sort, not a celebration that is for sure. It has been 5 years since the first cluster headache attack. Five years is a very long time to be on the extreme end of the pain spectrum and the amazing part is I am relatively lucky as far as diagnosis and treatment goes for non-malignant pain. Pain is not, well directly terminal. Some individuals go a lot longer without proper care and there should be no reason for it.

It is not uncommon for chronic pain sufferers to die from the unrelenting pain however this is normally by there own hand. It should never, ever be allowed to come to that. The undertreatment of chronic pain is neglectful I think. Statistics are hard to come by in a direct collation between chronic pain and suicide. The DrugLibrary.org Chronic Non-malignant Pain Factsheet by Marcia E. Bedard, Ph.D reads "Undertreatment of CNP often results in suicide. In a recent survey, 50% of CNP patients had inadequate pain relief and had considered suicide to escape the unrelenting agony of their pain. Unrelieved pain also leads to requests for physician-assisted suicide, another indicator of pain's harsh impact on the quality of life of many patients and their families." That would seem accurate with the conversations I have read or had with pain sufferers.

I rediscovered Our Chronic Pain Mission while reorganizing my bookmarks and it will be added to the list of links just as soon as I finish this post. The site has more the a few incredibly useful links and information . This section is particular useful and just a small sample of the whole site. I have to relationship with 'Our Chronic Pain Mission' other than I found it useful and hopefully you will think the same.

Here is another article entitled"A Chicken or the Egg Story". The article, from January 2006, is by By Rosalyn Carson-DeWitt, MD may help to shred some light on the issue. I have to move on the topic is just too depressing.

Secondly, not that I am way off topic... I have found myself pondering what life was like before all this started. How I was inevitable changed both physically and mentally. Going from a laid back, nonchalant positive out look on life to worries about how miserable I make others, and I do, around me at events, family dinners or even with one other. Most of the last few weeks has been spent in deep thought on how to improve the situation and to be honest I am tapped dry. I will likely have to remove anything and everything that can amplify an attack. The last thing I would want is to affect others in the negative manner which has become common place. I don't like it and only I can change it. Agony or not the new year will bring about some change. Another 5 years is not acceptable without improvements.

Wow, I have gone far off what I initial wanted to talk about. A lot longer too. Sorry about the the mindless batter. Oh well, save it for another post(s).

Paul

Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself.
-Harvey Fierstein

Somedays I Have All the Fun

2006-11-14T15:55:00.000-08:00

These passed 5 days have been nothing short of the most exhaustive and painful I can recall in recent memory. The clusters have burned themselves deep, deep into my ocular regions. Going from the left then to the right and back again. The ice packs feel like they are evaporating on touch. The back of my neck is swollen and tight. My nose and eyes will not stop watering.

The worst part of this cycle, besides the sheer intensity(an easy 9-10 on the ever reliable Kip Scale), is the lack of sleep, easily less than 4 hours in 5 days. There have been times when I have been unconscious but it is not restful or allow for R.E.M. Unfortunately, I know situation all too well from past cycles. Last time this exhaustive battle went on was a tad less than 5 years ago for 5-6 months straight. I would go day after day without sleep or at the very best collapse from exhaustion to a shallow straight of sleep. Not the best when the body desperately needs serotonine to aid in the battle. This is how I came into the land of clusterheads.

How I kept my sanity during this time is anyone's guess. Maybe I didn't. The amazing part is I survive. Why this happening again has me a little concerned. However, this time around I know what I am dealing with and am for more prepared to go at it alone if I need to unlike last time when I needed support and found none. But we are alone battling this monster aren't we? Each attack is directed at us and no one else. Not to say other do not feel the impact but they have the option of walking away in is too much. There is very little anyone from outside the arena can do. It would almost be worse to be a supporter ... almost. Maybe when I am not under siege I will reconsider this. However, right now my ice packs are calling me to get ready for the scheduled 4 o'clock bout. And in this corner...

Paul

He who joyfully marches to music in rank and file has already earned my contempt. He has been given a large brain by mistake, since for him the spinal cord would suffice.
-Albert Einstein

Medicare Drug Plans Cost More

2006-11-01T14:28:00.000-08:00

Ok, so this story is a couple weeks old but definitely affect those of you in the States who required prescriptions. Besides I am not really in the mood to write.

Bloomberg.com reports the cheapest Medicare plans cost 44% more. "The average monthly outlay for the least expensive plans will rise to $13.58 from $9.46, according to data compiled by Medicare. Humana Inc., the biggest provider of low-cost drug plans, raised prices as much as fivefold, while Medicare cut its monthly subsidy by 15 percent, to $80 a person..." Link

Paul

Happy All Hallow's Eve!

2006-10-31T18:39:00.000-08:00

One of the best holidays of the year! Chocolate and pranks what could be better :) With all the chocolate I am willing to risk a headache of two. Enjoy yourself tonight and be safe.

Paul

ER Visits from Adverse Interactions

2006-10-20T01:20:00.000-07:00

LiveScience has an interesting article about the severity of drug interactions.
"Harmful reactions to some of the most widely used medicines ─ from insulin to a common antibiotic ─ sent more than 700,000 Americans to emergency rooms each year... Not too sure what the number is here in Canada but I will have a look around and see what I can come up with. Link.

Being a 'need a pill for everything society' this is not overly surprising. It is just a shame how preventable some of these case can be. Adverse reactions have become a far too common(and dangerous) occurrence. Interactions between medications - prescribed, over-the counter or otherwise can lead to permanent damage and even death. Supplements can be dangerous as well. Since a great deal of our medications in general come from or at least based on nature the effects can cause one of the meds to amplify intensity. 1+1 can equal 3 with medicine interactions. Please let your doctor and pharmacist know EVERYTHING you take. It could just save your live.

I did have one experience with the herbal supplement Coenzyme Q-10 and the Beta-blocker, Propranolol(Inderal). Basically the Q10 amplified the Propranolol causing severe bouts of dizziness, excessive fatigue and low blood pressure. The worst part(s) about the whole ordeal was 1. My doctor recommended it and 2. Afterward mentioning the problems he told that Q10 CAN interact with the beta-blocker. If I had to go to the emergency would he have come in to say "oops, my mistake"? I guess it is the fact that the information is out there yet he could be bothered to tell the patient is what irks me the most. Oh well all is better. Be careful out there.

Now here is an article from the 'just how dumb the school systems have become' department about an elementary school south of Boston who actually took it upon themselves to ban the game 'tag'! Screw the important things like improving a child's learning abilities but having that game of tag banned is at the top of the list! Mix priorities anyone? That was one my favourite past times at lunch and recess. According to School Principal Gaylene Heppe "Recess is a time when accidents can happen". Now can anyone think of a time of the day when accidents can't happened? Hmm maybe it isn't fast food and video games making kids fat. Link At the bottom the article there is a related article called "Doctors urge more playtime for children". What a mess up world we live in.

Paul
Humor is reason gone mad.
-Groucho Marx

Gmail Accounts Anyone

2006-10-17T19:29:00.000-07:00

Hey Everyone,

I noticed I have 100 gmail accounts to give away. Anyone want one? Just
E-mail me no questions, promos etc . I just want to get rid of them.

Paul

The Fall is upon us

2006-10-01T16:30:00.000-07:00

Fall is without a doubt one of the worst time of year for triggering cluster cycle as well as migraines. Spring has a similar affect, some say worse because on the instability of the weather. Most switching from a high to low pressure system each day. When one cycle or attack end the next will begin with something a seemingly ordinary as rain.

Carol Sveilich wrote an interesting article from August 2005 about Coping with chronic illnesses such a chronic pain. It deals initially with chronic fatigue syndrome and fibromyalgia because individuals show no symptoms on the outside. The same goes for cluster headache sufferers and migraineur as well. Maybe if we develop a rash or bled from our ears and nose we might be taken seriously. Also the article goes into how someone who 'looks healthy' has to endure the critisism and belief of so many people. This can and usually does affect us mentally. Why should we have to spend so much energy defending ourselves about how a disorder has changed our lives just because we appear healthy and normal on the outside. In some cases a disorder have permantly altered the very fiber of who an individual once was to the point of being unrecognizable in personality and being.

For example, in the beginning of all this I was told more time than I care to remember that the pain was "all in my head", "its just stress" or my personal favourite "quite being lazy. You are just using it as excuse to get out of work!". Funny thing is the latter comment was made by someone has been suggesting a treatment that worked for her completely unrelated to clusters and insisted for the last 2 months that is would work for me. After politely saying them 'no thank you' I was told "You can't be that sore then!" in a very condescending tone. Some things never change.

Anyways that's enough for today I think. Here is the article by Carol Sveilich entitled The Mask of CFIDS and FMS: Coping With Chronic Illness and Pain. Enjoy.

Paul

Shrinkage!

2006-09-22T21:37:00.000-07:00

Here is an interesting article, even if it for 2004 about how chronic pain may affect a sufferer's brain. The chronic pain is related to back pain in this case.

"It is possible it's just the stress of having to live with the condition," Apkarian told LiveScience. "The neurons become overactive or tired of the activity."...

"People who have had pain for longer times have had more brain atrophy," Apkarian said.

Chronic Pain Shrinks People's Brains

Paul

Depressing

2006-09-09T04:32:00.000-07:00

Attack cycles are always the worst right after a sustained pain-free period. It does not matter really how long the break is. As soon as my mind #& body become euphoric or comfortable with a life of 8 continuous hours of sleep and no more "hot poker in the eye" sensation, the excruciating cycle hits me. Most likely the bout is no more intense than the rest of them but my body has seemingly forgot how to cope with this level of pain on a daily basis. Eventually I am able to adjust physically. Mentally, however, take a bit longer.

The possibility of being one of the fortunate few who's' cluster headaches end for no apparent reason was without question at the back of my mind. It slipped to the front every now and again but for the most part I am a realist but still it can't hurt to hope for the best.

I enjoyed myself for the 3 weeks of 'vacation'. During which time I became fully aware of just how miserable this disorder has caused me to become as well as its affect on others around me. It is hard to think of life in-depth when the mind is clouded from the effects of each attack. The short and shallow thoughts of the moment are all that consume me. For instance, Do I have enough ice-packs ready? Is there anything in the current environment that can intensify or trigger an attack? Etc etc.

Unfortunately when someone has a disabilitating disease or disorder that has no effect treatment as in my case, I am non-responsive(my body that is) to the usually course of treatments. My doctors conceded(after several years) that there is little that can be done for the ailment itself and now the focus should be on increasing my quality of life. This approach has helped me out quite. If it was not for this change of approach I would not be able to write this blog, talk to people or be able to go shopping just to name a few instances which clusters have affected my life. So there is hope. My life has been greatly altered by them but with the right goals one can still have a life.

Paul

"There are only two tragedies in life: one is not getting what one wants, and the other is getting it."
-Oscar Wilde

Back to Pain

2006-08-31T05:41:00.000-07:00

Well after 3 of the most comfortable weeks I have had in almost 5 years the clusters are back. And they seem to have upped the ante. The attacks seem so much worse than I remember. Each one wants to cause me to scream. The worst part is I know I will get used to them. For good or bad our body's are great at forgetting just how intense pain can be and how miserable we were. I hope long breaks in between cycle will become the 'norm' instead of what I am used to, no breaks. Just having one cycle trigger the next round of attacks, all the while each one sucking the life out of me a little more.

Paul

Television Helps with Pain?

2006-08-21T23:09:00.000-07:00

A pediatrician and neonatologist at the University of Siena in Italy will have an article published next week in the British journal Archives of Disease in Childhood regarding how children suffered less pain watching television when stuck with a hypodermic needle than those who were not. The cartoons they were watching "were even more comforting than Mom". Link

I guess it helps not to focus on ones' pain. If only there was a technique to help with this. Oh wait a minute there is.(sorry for the sarcasm but science loves to do studies on the obvious)

Paul
I can stand brute force, but brute reason is quite unbearable. There is something unfair about its use. It is hitting below the intellect.
-Oscar Wilde

A Headache of Different Sort

2006-08-11T11:14:00.000-07:00

Figures, I was finally on my way to completing my re-installation of my pc when I made the mistake of thinking that it would not be a bad idea to run a couple maintenance programs to start everything off without issues. On the right foot as it were. Get rid of any erroneous files, fix the crossed-linked ones as well and arrange the data to perform optimally. When an unrecoverable BSOD(Blue Screen of Death) ruined my day. No Last Good Configuration, no way to access restore points which I never do anyways, no Safe Mode or recovery console. Just a bright blue screen. Game over! All of this was thanks to combining the latest version of Zone Alarm with running scandisk(chkdsk /f). Thank gawd for 'live' Linux distributions or I would have never been able to retrieve the configuration setting that take hours to finely tweak(yes I'm a geek!).

Luckily I was able to access another computer to research on exactly what the heck happened. By the amount of complaints on various technical and non-technical forums this seems to be a very common bug with no sign of being fixed anytime soon. And people actually wonder why there is piracy! I realize there is far more issues surrounding the piracy software debate. The software industry is a joke. Imagine if every industry was like this. A car blows up after the tire pressure checked or a lamp causes a complete grid failure when it comes time to change the bulb. Ugh! Very frustration.

I realize this has nothing to do with cluster headaches but I needed to let of a touch of steam before I blew up!

Paul
Am I getting smart with you?
How would you know?
-Dilbert

A Bit of a Delay

2006-08-08T18:23:00.000-07:00

Sorry about the lack of posts. Mindy's computers' NTFS tables became corrupted causing the pc not to boot and left the files unrecoverable(supposedly). The beauty about hard drives is nothing is ever lost even after the use of 'wiping' programs. Later which the remainder of the week was spent recovering the files and re-installed everything. After that, there was finally a chance to setup the hard drives I recently acquired prior Mindy's computer going down.

Strangely the experience gave me a sense of usefulness I have had in quite some time. It was nice to be able to resolve some more complex issues even if just for a short time. A bit of like old times, pre-cluster days of course. With any luck this is will be a positive leap to regaining my prior level of knowledge and increase my ability to focus for long periods. Since the clusters started there have been small steps but nothing like this. Before now, these issues have been too challenging from the stand point of not having the ability to focus for any reasonable length time or to absorb what was to be done. Now with the level of pain at the current state, it feels like a good time to start to regain some of my former self when it comes to advanced understanding of hardware, software and security of the information age without slipping far down the opposite direction.

As for the headaches they have not been as bad. The usual ups and downs but nothing too bad. Still, I am not quite used to the low pain levels but that sure beats trying to adjust to unimaginably high agony. The euphoria from endorphins after each attack are much noticeable since the pain level which normally accompanies them is far lease noticeable. I have wanted to write so much. The only drawback with this is that the inspiration almost always comes when lay down for the night. Prior to recently the pain would be too high and leave me tossing and turning for hours so I would stayed up. Now when the choice comes I choose sleep every time. However, I am sleeping a bit more than normal but normal was so broken and disturbed that it would not what one would call restful. It should not be too long before I have caught up on sleep and able to have decent sleep cycle. Finally nice to have nice deep, peaceful slumber without being rudely awakened by a 'hot ice pick through the eye' sensation. Could this be the start of the end for my cluster headaches?

Paul

A pessimist sees only the dark side of the clouds, and mopes; a philosopher sees both sides, and shrugs; an optimist doesn't see the clouds at all - he's walking on them.
-Leonard Louis Levinson

Medication Errors

2006-07-21T22:44:00.000-07:00

A report concluded on Thursday, July 20th 2006, that roughly 1.5 million Americans are injured because of errors in their medications.

“The report estimates that such errors in hospitals alone cost the health system well over $3.5 billion per year. That does not include errors made at doctors' offices, pharmacies, long-term care facilities, and in patients' own homes.” Link

Now this is down right scary. 3.5 billion? Most a likely preventable excluding adverse reaction of course. I realize they are trying ot come up with a new way to cut costs and most importantly save lives. Hopefully the new system will be more affective. The number is staggering.

Personally, I have had the displeasure to be on the receiving end of numerous experiences where errors with prescriptions received over the years. Everything from wrong dosages, prescriptions misplaced by the pharmacy and later found days later, to the amount of times per day to be taken off by one or two, drug interactions and once even have had the wrong prescription inside a bottle labeled as something else. Thankfully I was able to catch the majority of them. Remaining vigilant in one's treatment may just save a life.

Some of the ways I have been able to avoid a catastrophic situation is by following from some past, hard learned experiences. One of the better ideas is to go over with the doctor what the prescription says and insist it be legible not just to him or her but to anyone who will read it. Photocopying afterwards does not hurt either just in case to protect ones's self against a “he said, she said” type situation. Also I try not to hesitate to thoroughly go over what the prescription says when it is dropped of at the pharmacy as well as when it is picked up. Doesn't hurt to open the bottle to check the medication is really what the label says, If there are any doubts the pharmacist will be able to help out. And if I am ever unfortunate enough to be place in hospital ask a family member or friend to ask what is being given and the amount. Plus I like to let them know of past experiences and allergies again even of the computer says the same things.

I don't mean to come across as expecting mistakes from some very intelligent individuals but as the more times a task is done the higher the probability a mistake will happen.

Has anyone else had problems, close calls, or issues with a prescription How wide spread do you think this is Does anyone know what the statistics are for Canada

Paul
In the sick room, ten cents' worth of human understanding equals ten dollars' worth of medical science.
-Martin H. Fischer

A New Day, A New Life

2006-07-19T04:18:00.000-07:00

With this latest success in my health, every minute without the torment of clusters is, well, incredible! Not being tormented 24/7 is new completely territory for me. Well not exactly new territory as I have not been plague since birth with the affliction but more forgotten what life is like without pain. Too be forthcoming, I never thought I would ever again experience another moment without aguish ever again.

Over the past 5 years I have had to deprioritized my entire life. dreams, friends, family and so on will finally have a chance to be done. There have been so many experiences missed, & time lost. Plans were postponed or cancelled because I simply was physically unable to participate. And some experiences I was simply left out of, Personally I wouldn't want me around either, The parts of life that I have had to put off over the past half decade thanks to the fierce pain I may(hopefully) get a chance to complete.

With 5 years to make up for I am little overwhelmed. Excited yes, but overwhelmed nonetheless. There is so much I want to do and see. Maybe even make amends for regrettable things said and ways acted during extensive bouts of irratability the cluster headaches caused. Still that is no excuse. No time like the present to start my new life!

I have no delusions to think I am cured or will ever be totally pain-free for life but having, with luck, more than the seven days cluster-free is something I have so desperately needed. There could be a chance the extra time will allow me to better recuperate so I won't be exhausted going into every attack.

Paul
Look, I don't want to wax philosophic, but I will say that if you're alive you've got to flap your arms and legs, you've got to jump around a lot, for life is the very opposite of death, and therefore you must at very least think noisy and colorfully, or you're not alive.
-Mel Brooks

6 Weeks Later...

2006-07-17T14:31:00.000-07:00

Firstly, I would like to say thank you for all the support I have received since my last post. It made a world of difference.

Second, if you do not know the meaning to a particular word simply double on it and a dictionary page will find the definition for you. I thought this would not be a bad idea just because of all the medical terms. I hope this will be beneficially for you. Your feedback is always appreciated either through comments after each posting, the guestbook at the bottom of the page and of course my Email. I will look forward to hearing from you.

Well after many months of agony, sleepless nights and trying to somehow prove to my dr. that my break-through pain is not no longer a seldom occurrence but a serious issue again, my doctor and I were able to adjust my medications to the point that the pain is NOT the number one issue anymore! How great is that? The other symptoms of a cluster attack are still present. For example, the facial sweating, rhinorrhea(nasal congestion), osmophobia(not extreme but enough for me to going to stores that have the perfume section by the front entrance, clouded thinking just before and right afterwards, and of course everyone's favourite mood swings. This is the lowest level of pain since before this nightmare began. With any luck I will be able to regain some of my former self and lifestyle back. For the first in a long, long time I am almost content with the way my health is for the most part.

The best approach my team of doctors took after realizing I was unresponsive to various degrees of the usual course of treatment for cluster headaches was to treat it as a long-term chronic pain issue. Which of course it is. Being one of the very unlucky few who does not respond well to the triptan family of medications, ergotamine and so on. Coupled with other health problems a different approach was desperately needed and so far it seems like the right one. Mind you, there are not many viable options left. The last resort would be to have surgery. The long term success rate is not that good and the chance of something going wrong is not currently worth the risk, for me at least.

The triggers are still as prevalent today as they have ever been and would of normally caused an attack to be brought on faster, if not instantaneously or amply the level of pain in the current cycle and increase the frequency of attack. Now I noticed the attack but the pain is almost gone. I have to admit it is a very strange experience. Thankfully, most triggers can be avoided but there is always that one person who has to fill the entire room with their perfume/cologne. Sheesh people it's not bug spray!

I do not know why I bother to try and differentiate between cycles but I will anyways. What else is there to do when you spend hours a day with an icepack on one's face. Over the course of a year I may have 7 to 10 day off in total. However, with that said I can tell cycles from one another. They may be ongoing but each seems to have a distant 'personality' if you will, depend on factors like food, weather, stress(that's a big one), health, how the body/mind is recovering from the last bout and so on. Knowing the environment around me helps me to be more comfortable during each attack and does minimize the trauma of the ordeal.

I can't be the only who has noticed this. It might be easier for chronic cluster headache sufferers to notice for the main reason of sheer volume of attacks. The other day I worked out some numbers for my sister not even realizing just how many attacks I have each year. This is of course a rough guesstimate. 365 days a year times 4 attacks per day equals roughly in the neighbourhood of 1460! That means I have endured well over 6000 attacks. This is of course have the week or so I have off a year included or the increases during various cycles throughout the year. I am taken aback by this figure. So much pain in such a short time. No one deserve that. How was I do it?

Paul
If we could sell our experiences for what they cost us, we'd all be millionaires.
Abigail Van Buren

EDIT: Fixed post date to the proper one and changed title from 'Latest Update' to '6 Weeks Later...'

Too Sore to Bother

2006-05-31T03:03:00.000-07:00

Sorry about the lack of post. The cluster headaches and pain level are at an all time high. Feels like the days when I was having to fight with everyone to prove that it wasn't all in my head. Metaphorically speaking of course. That was 5 years years ago, well 4and a half. I think my body is completely resisting my meds right now. Not sure what I will do if they aren't adjust. Daily ER visits is not something I want to or should have go through again. If a bit of energy comes my way I will post a bit more but for right now the pain is winning and the more rest I can get the better.

Paul

Quick Update

2006-05-12T02:40:00.000-07:00

Sorry about the lack of posts. This bout has only now eased up enough for me to focus something. The pain has lowered in intensity, thankfully, and will any luck I will be able to go through my 'end of cluster' ritual. It is mostly stretching to get the seize muscles(from the stress of waiting and going through the attacks) more relaxed, eating since that is usually the furthest thought from my mind during a cluster attack and try to catch up where my life left off last month. So if I haven't replied to a comment or email in the past few weeks I will be, with luck, replying this weekend. Hopefully I will be able to catch up on my blog as well.

Here's to pain-free days. May we all experience more than the share we are receiving.

Paul
Pain is no longer pain when it is past.
-Margaret J. Preston

Unrelenting

2006-04-26T08:56:00.000-07:00

Well, the cluster headaches are in full force. I was hoping with the beautiful weather things might ease up but no such luck. This current cycle is one of the scarier types I experience from time to time. The last time I had one was before I started the cocktail of medications about 4 years ago. Kind of sucks to be on any prescription but at least now I have some sort of life. Now since I haven't experienced a bout like this in such a long time I am a little bit spooked. I should explain.

When my personal hell began, there would be one attack followed by another and another and so on. Each cluster headache was easily 9 or 10 on the Kip Scale. The last cluster would trigger the next one. No breaks. No relief. And of course no help. Trying to have people around me, including my GP at that time(he is no longer my doctor), the level of pain I was in. But if there is no wound then I can't be in pain, right? What a stupid theory that was/is! There were times when I was tempting to take a hammer to my head. At least that way there would be something that could be seen, especially by me. That was hard. Being in agony and having nothing to show for it other than a bloodshot, droopy, watery eye, runny nose and a change in personality(from the pain).

This went on for months. I was allotted very little sleep. Any sleep I did have was shallow and dreamless. After 6(?) months of this my body and mind basically collapsed. Two weeks, approximately, was spent in hospital trying to help me have proper nights rest. Slowly a temporarily solution was found and finally after 6 long months I dreamt. And guess what? Afterwards my doctor realized a good night sleep was essential to dealing with chronic pain. Who would of thought?(put your hands down. He can't see you:)

However, once again I am having cluster headache after cluster headache accompanied higher than the usual amount of pain. The Kip Scale should be adjusted to go up to 11 or 12. It has been awhile since the level of pain was more than I could deal with. Normally I receive about 4 clusters a day of various intensity. Luckily there are spaced out enough so dealing with each attack is far easier than in the past. Now this one cycle is grudging up all the old memories and not good ones at that. Are there 'good cluster memories?

But the pain has lowered itself down to about a 4-5 so I am going to rest my eyes and with any luck sleep for a couple of hours before it rises back up to the 9 & 10 level. Wish me luck.

Paul

In Limbo

2006-04-21T09:40:00.000-07:00

My day started around 10pm last night. Not usually a sign of good things to come. One of the reasons for the weird time was because of a seizure in the latter part of the afternoon. No big deal. They happen all the time. I lay down, recover, then come to when my body is ready and my mind cleared. This can lead to some interesting sleep schedules. It isn't the best thing for a cluster sufferer but there is not much I can do to change it at this moment.

This time I awoke in some agony. With my head screaming I went for my ice packs at a speed only cluster sufferer can achieve and headed for the couch. There I would try to outlive my torment as well as not bother anyone else. No matter how many attacks I go through there is a part of me that believes I can actually sit still for the entire episode. Mind you that side of me thinks chocolate is worth the pain it causes. And who can blame it. Chocolate is life.

Now within a few minutes I knew I was in for a long, exceedingly painful bout. When these happen, all too frequently I might add, I head for very, very hot bath. Sometimes this works to lower the intensity other times it is the worst possible thing to do. All depends on when in the cycle it is used. Right before seems to work best, just as my hands and feet become blocks of ice. If I can time it right then I will only have my 2 night time attacks. Otherwise the daytime bouts will run over into my night and so on becoming one very long, sleepless cycle(guess that is why they are called 'cluster headaches'. Can you feel the sarcasm?;) Kind of like right now. However, tonight the bath made the intensity go up a notch. Can we say 'I'm Screwed!'.

As of now my eyelids are lowering & widening over and over, begging to stop the workout and stay closed for a few hours. But of course the pain is not cooperating. Being tired during a cluster attack makes them much harder to deal with. During times like these the 'why me' syndrome comes into play. Maybe even tears and literal head banging. The bright side is that I know they will stop for a time. The dark side knows they will be back.

Paul

I reached for sleep and drew it round me like a blanket muffling pain and thought together in the merciful dark.
-Mary Stewart

Hope? Well kind of.

2006-04-19T22:49:00.000-07:00

This has been the longest I can remember without updating. Over a month. Time flies when you're a chronic clusterhead so here it goes.

Since my last post I have had an amazing respond to a medication called Divalproex Sodium. Also goes by the brand name of Depakote. Within a week a noticed a definite decrease in pain for the first time in a very long time! As usually the medication presented some an upset stomach even when taken with or just after a meal. Now this can be side effect and is normal for until the body adapts. Unfortunately this can be a major issue for me is I have chronic GERD (Gastroesophageal Reflux Disease) as well as chronic clusters & epilepsy. After the second week I had quite a bad case of unrelenting heartburn. Then on the 3rd week the time came to up the dosage to from one 125mg twice a day to two 125mg tablets twice a day. What can be said except 'Game Over'. Nothing would stay down so they had to be discontinued...Stopped...And quit. I almost cried.

In the short span of 3 weeks my mind had lost the 'chronic cluster foggies' and became able to focus on tasks without the ever linger of a previous or upcoming attack. Mindy even noticed how much more I was smiling. It felt nice to genuinely smile again. Almost forgot how. One good thing came out of the experience, the fact that we now know something works. Depakote may or may not work without the other medications I am on but at the very least it gives another pinhole of light. I hope sometime soon I will be able to see my way around in this darkness.

Paul

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all.

-Emily Dickinson

Testing is finally over

2006-02-20T00:07:00.000-08:00

After 2, 6 hour sessions I have successfully completed the tests to see if or how badly my brain has been damage from the accident with ethanol glycol that started the last 4 years of pain. They were quite draining. But there was one bonus I hadn't counted on. This was the first time in over 4 years a doctor has seen me during an attack. Normally I would cancel an appointment if the pain is to high on that particular day. But with having such a long period with him they might be able to better understand what I have been explaining all this time.

I have been told some preliminary result based many on the doctor's observations while he conducted the tests. He is pretty sure I have some cognitive impairment. To what degree he is not sure and will have to wait till the results of testing come back. After which decisions will likely be made on how to proceed. He is going to push my GP & neurologist to sending to me to St. Paul's Hospital in Vancouver for further testing as well as to enroll in their pain clinic. I hope it is better than the last pain clinic I went to. By all accounts the reviews are pretty positive from people I have talked to. Also he will be suggesting that a MRI would be a good idea just to check and verify what is already known.

Now the big question. Will all this help me find a job that I will be able to do on some sort of consistent basis? With the summer coming up it will be easier than if I started all this headed into the fall and winter months. Not my favourite time of year because that is when cluster headaches are at their worst, at least for myself.

Another problem he thinks I am having is that because I have above average intelligence(his words not mine) I am having trouble 'letting go' of the life I used to have with regards to not being capable at various task. This of course is causing immense frustrating on my part. It is almost scary to know my mind may never get back to the level of functioning prior to the accident. If there was any day I could have over, that would certainly be near the top of my list. Things will work out in the end. They always do.

Paul
Believe that life is worth living and your belief will help create the fact.
-William James

New Development

2006-02-13T10:33:00.000-08:00

Possibly some good news. I may be referred to the St. Paul's Pain Clinic here in Vancouver. More will be known later this week. In the beginning I was referred another pain clinic with little success. The St. Paul's clinic has a little different approach. What exactly that means I will not know until I get there. Hopefully I will be accepted soon. Right anything to help is welcome.

Paul

Another cracked tooth!

2006-02-03T12:33:00.000-08:00

Un-smegging-believable! Technically it is not a tooth. Just the recent filling I had to have done thanks to my night time seizures. Time to crazy glue a mouth guard to my upper and lower teeth. Maybe knocking all of them out. Let's hope I never whined up in prison where I will be the most popular inmate for all the wrong reasons. Thankfully disability covers a good chunk of the dentist bill otherwise they would be getting removed. In the past 12 months I have cracked or broken apart 14 teeth. Do you think I get a free toaster with the 15th filling?

The weather around here hasn't been any better. Rain, rain and more rain is in the forecast for sometime yet. I sweart I am developing a phobia to the wet stuff. Not really the rain but more what the storms bring along as a dance partner - clusters! No matter how many times I try to explain how a change in weather causes me pain people stare at me like they are making a mental note to get the rubber on stand by. What people forget to take in to account is the way clusters work. It is not a one time event. They keep coming and coming and coming. You see its not the rain I dread but the weeks of torment the drop in the barometer tends to cause me. But why should I keep re-explaining it to the same individuals? Maybe I feel that it needs to be explained because there are no bandages to be seen. Remember, no cast means they have no pain.

Paul
There is no pain so great as the memory of joy in present grief
- Aurelius

All mixed up

2006-01-27T13:55:00.000-08:00

Yesterday I my attack finally peaked. After having shadows(the feeling an attack is imminent) for the past few days the clusters hit their highest intensity. High enough to keep me all mixed up today. When I finally awoke the disoriented was spectacular! It took more than a few moments to realize where I was. After 4 years of this, I've learned not to panic. Everything usually comes flooding back. IN some cases trickle but the way I figure it, if I am at someone elses I may as well enjoy myself. This morning for some strange reason I pour coffee beans into the coffee maker. Luckily pouring the water in is the last thing when making coffee or I might have has soggy beans;) Yummy... That's all that is new in my world. Riveting stuff huh?

Chronic Pain and Depression
Barriers to Effective Pain Management

Paul

Cluster Anthem

2006-01-23T14:33:00.000-08:00

...I push my fingers into my eyes...
It's the only thing that slowly stops the ache...
But it's made of all the things I have to take...
Jesus, it never ends, it works it's way inside...
If the pain goes on...
Aaaaaaaah!...

Duality by Slipknot

That is my cluster anthem. Every time I hear that verse it reminds me of the thoughts which run through my head during a cluster attack. The rest of the song not so much but still. Funny how songs can mean different things to individuals despite what the author intended.

Some links my neuroligist recommended:

Canadian Institute for the Relief of Pain and Disability
National Foundation for the Treatment of Pain
Canadian RSD Network
Chronic Pain Association of Pain
Canadian Pain Coalition
American Chronic Pain Association

Paul

More tests

2006-01-18T17:43:00.000-08:00

At least they were painless. These were for a job (re)training program, basically to see what I can and can't do, what I would like to do, what is physically improbable for me to do and how much the clusters interfere with everything. So far it looks like I will(hopefully) need retraining. Right studying seems more likely but we will see. I can't picture myself being able to work 9-5, 5 days a week just yet, if ever. Plus because of the length of time a cluster cycle lasts and the sudden onset reliability is something of an issue. Ideally, a job where I can telecommute and go at my own pace would be the best for me. Know of any? However that is incredible optimistic. Here's looking at hoping!

My clusters have been doing quite well since my last post. I even had 24 hours of being completely pain free! Last summer I had the same experience. Shouldn't it be the norm to remember times of pain instead of the other way around. Unfortuneately the aches are back:( The surprising part is that the weather has been absolutely miserable. It literal has been raining since mid-December with only ONE day without. Isn't it supposed to snow this time of year? Dam rainforest!(j/k)

Here are a few links that are actually on topic:)
Are Migraines All in Your Heart?
Think Away the Pain
Ten Steps To Overcoming Chronic Pain
What is Chronic Pain?

Paul

First Post of 2006

2006-01-12T01:07:00.000-08:00

I hope everyone had a good xmas and even better New Years. Mine was alright from what I remember. No, no drinking just sore and foggy from the Topamax. Now there is a medication I could do with out. Mind you, it did help with some aspects of my epilepsy but this was a case of the cure being was than the ailment.

Just before xmas, I met with the neurologist to see if the last course of treat was helping and to see if anything had changed. He would ask basic questions like 'what did you do last weekend' and not only did I not have a clue but I could not seem to focus on anything particular. Normally when I try to recall an event where specifics are few and for between I regress back to what happened on the days before and after. Usually this helps, not always with exact conversions but I at least I will recall talking with someone for the most part. While on Topamax everyday was like walking through fog. Thankfully, it has been discontinued as a course of treatment. My awareness has become clear, at least back to where it was prior to the days of the trial of Topamax. Strange how a medication works wonders for some and can make life more complication for others.

Now that I can think again I will be posting a lot more than I have in the past 6 weeks.

Paul

Merry Xmas

2005-12-23T17:01:00.000-08:00

Everything is too hectic for me to concentrate on my blog till likely after boxing day. I will finish a few of the posts after the holiday. Enjoy yourself and wish you all best this season.

Paul

More Bureaucracy pt 1

2005-12-21T23:36:00.000-08:00

Right now I am being screwed over once again disability. As of right now, I have no source income, no medical or prescription coverage. In addition, make matters worse, my so-called caseworker refuses to return calls or messages. The whole point of having to obtain the designation of disability status or 'Persons With Disability' PWD is to help individuals who could not otherwise hold down a steady job or support themselves. Basically, to make life somewhat 'normal' and to be treated with the respect one would give someone without a life altering disorder or ailment. Moreover, without this program in place the odds of me ending up starving and without a roof over my head are quite high... for a second time.

Last time I had major issue with the PWD program was when I first applied. As with most government sponsored programs the criteria is black and white. Either you qualify completely or you are own your own. To start things off I should mention that I had, and still do all the prerequisites for a PWD and was unable to be properly diagnosed because I cannot afford ANY medication that may aid me other than the semi-frequent ER visits. I am sad to say that I was on social assistance because repeated attempts at work failed for obvious reasons.

My doctor and I filled out the multiple page form together and sent it off the same day in October. 5 weeks the government decided to change the way people should apply for disability by having them and their doctors fill out an even lengthier, more detail set of forms. So the original form was sent back, voided, and we went ahead to fill out this new set out of forms. This not only happened to me but to EVERYONE who was on PWD in British Columbia at the same time. The people who were already established had a bit more flexibility when the time came to filling out the forms but not by much. As you can guess a landslide of letters, forms, reports, complaints, hit the workers receiving the reports and so on. For some reason the government was surprised this happened.

My doctor and I once again sat down to fill out the new form; to be on the safe side we included reports from quite a number of different type of doctors and specialists all saying this will be a long term medical issue that greatly impacts my everyday to the point of needing assistance. The forms were sent the same day in the last week in November. According to the PWD, I should have a response in 4-6 weeks. Fair enough. I mean, there is a lot of medial information to go over and people verify with. That was all fine by me.

January came and went without a peep of a response to say I was accepted or denied. Even if I was denied I could appeal through various channels and likely have more success but the thing is I need to and have the right to be told whether my application successful or not. Therefore, I called and was told something should be known by the end of the week. Then I phoned at the end of the week and was told early next week a decision should be made. Can you sense the runaround? I could. So began to call ever other day, sometimes twice a day just to be a pain. The same script was repeated back to me over and over, 'There is nothing on my computer that says a decision has been made but it was received at the beginning of December and you should know something by the end (or beginning, depending when I called) of the week.

To be continued...

I will finish up tomorrow I am just too tired right now. Sorry

Paul

Some fun geek links

2005-12-14T22:02:00.000-08:00

Lately I have been so far down in the dumps I am giving some serious thought to buying a garbage truck. But instead I thought that not talking about cluster headaches, epilepsy or chronic might due me some good and maybe get a better idea of who I am.

I love being a being a geek and when I came across a blog post about the top 10 things you need to know when dating an Apple Developer (they have nothing to do with the fruit) is like and I just had to share. For example, #2 Your body/sex appeal are nothing compared to the power of a processor. If you are nodding your head right now you are dating a geek. Take a chance and read the rest.

Shameless plug for my favourite browser on the planet, Firefox!Tired of crash after crash with Internet Explorer and security holes that could let anyone into your pc. Firefox allows you to regain enjoyment from the web. You can even have Internet explorer on your pc if you want. Try it out. What have you got to lose?

Ever wonder How to Appear on Wheel of Fortune or How to Get off a Phone Call Politely? Then have I found the site for you. It's call eHow.Clear Instructions on How To Do (just about) Everything

I wanted to write more about myself however lately with my stress at levels it has not been at in years I find I need more sleep than usual. So off to bed I go. Tomorrow will be a new day...

Paul
There is more to life than increasing its speed.
-Mohandas K. Gandhi

Ever Dependent

2005-12-12T17:33:00.000-08:00

Dependent

For little over a week now, since the start of the last major cycle, I have had time to reflect on my life. That is the worst part of clusters, I think, is being trapped inside one's body and the only things to do is focus on the pain or try to think of something else. This is what gets me into trouble. Over the past 10 days or so, I have come to the realization without the aid of other I would be in big trouble and I HATE IT! For me there is nothing worse than having to rely on someone. Relying on others is the exact opposite of who I am. Before my hell began, my independence was and still is something I greatly value. I used to refuse help, quite stubbornly as I recall, when someone wanted to help me tidy my place or run my errands. I hated to go anywhere unless I was driving. What can I say I just did not trust anyone else is driving plus they drove too slowly and I make a horrible back seat driver.

Now quite the opposite is happening. I need to be driven everywhere and help is always needed, either financially or physically. A job is out of the question for now but I am doing the best I am to change that even if only for a few hours a week. The most frustrating part of all this is there is not way to completely predict or control chronic cluster headaches. Who would be willing to hire someone who will be in pain 360 out of 365 days a year, not be able to guarantee that they will be able to show up for work when scheduled or have to leave when the pain become intolerable? That would be an employer I would like to know the name of.

All I want out of my life is to achieve my personal goals on my terms without the feeling of knowing I owe someone for what I have done but rather to be able to say I did it.

Paul

You cannot dream yourself into a character;
you must hammer and forge yourself one
-James A. Froude

Feeling Guilty Again

2005-12-05T22:38:00.000-08:00

Ever since the Christmas party on Saturday I have an overwhelming sense of guilt because I let my cluster headaches get in the way once again. If they only affected my night then I would not give them another thought. After all, feelings of guilt as well as causing us to be ashamed of how the pain has changed the sufferer is just another one of the lovely symptoms one can develop when in chronic pain. Feeling guilty for something I have no way to control is a horrible sense of loss of control.

Mindy has told me that it did not bother her. Maybe it does not but we have had conversations in the past where after much digging she finally gave in and told just how much the whole situation does bother her. I cannot blame her. This is certainly not the idea situation for either of us. However, we love each other and hopefully that will be enough to get us through.

Moreover, this cycle has caused me to miss more meetings. This one was for deciding what sort of retraining I would need to be able to get back into the work force, more computers I hope. The thought of going back to school excites me terribly. I hope there are programs I will be able to do at home with no timetable. Ideally, that would work out the best for my need and have the best chance of success. If the material could be handed out at the start of the semester then allow me to hand the assignments in at the end without the worry of missing class because of an attack or seizure then I would do quite well. My biggest concern is the going ahead with a program only to have to stop because the pain is too intense. That would be the scariest realization to know my life will be no more self-fulfilled on an intellectual and independent level than it already is. I will be stuck in neutral while I slowly slide back. Being able to regain my independence is a huge goal and I cannot let anything get in the way of it.

Paul

True love doesn't consist of holding hands,
it consists of holding hearts.
-Battista

Mindy's Xmas Party

2005-12-05T15:38:00.000-08:00

On Saturday, Mindy and myself went to her company's annual Christmas party. She was excited quite excited about going ; most of our the day was spent preparing for that evening. We even braved the mall with all its holiday shoppers for an outfit. The plan was to meet up at a friend’s house so a group of us could car pool. The carpool was a hell waiting to happen, just for me mind you. The reason I wasn’t overly enthusiastic about was because if I start to feel the start of cluster headache I could leave and Mindy would be able to enjoy the rest of the event without having to deal with 'the Mr. Hyde' personality that tends to be brought along.

The dinner party was held at a heritage estate. The floors were laden hardwood and a roaring fireplace in a large open living room mixed with the elegant nuance that only comes with years of care gave it a very friendly atmosphere. Employees and their spouses were for the most part pleasant and enjoyable. There are always one or two who I hope not to be unlucky enough to be cornered by because they have had a couple too many. The type where the level of volume is more important than understanding what is being said. Nevertheless, for the most part everyone seemed to enjoy themselves, including me until dinner.

Don't get me wrong I loved the dinner. The whole dinner was not the problem, just one lousy ingredient. I knew right away I would be in trouble and my concerns about the carpool would be validated. The mushroom and I suspect the steak as well had wine added to them, a red (for the meat sauce) and quite possible white wine in the mushroom soup. Alcohol is one of the worst offenders for sufferers in cycle. By the end of the meal, I was on edge, wanting to disassociate, and of course in extreme pain. I did my best not to let the attack ruin Mindy's evening. Eventually I wondered off by myself to find a nice spot by the fireplace. I figured that being out of the way would be a better than have coworkers tell Mindy what a grump I am. I did not want that to be reflected onto her.

At the mercy of the carpooler, we finally headed home a few hours later. Too soon for Mindy and too late for me. I was silent, I think for most of the ride home. The pain had most of my attention. My memory is quite foggy will in a cycle. It always gets like that with an intense attack. The cycle is still going strong. I have hope that it will be gone by xmas. Mindy bought me the dvd 'A Muppet's Christmas Carol' to cheer me up. It certainly helped. I have wanted that movie since it first came to VHS. She is too good to me I think.

If anyone is interest in chatting on Google Talk about clusters, migraines or anything else, Please do not hesitate to contact me. I can be found at the same email as at the bottom of the page.

Paul
You must be the change you wish to see in the world.
-Mohandas Gandhi

A Few links for now

2005-11-30T11:56:00.000-08:00

Here are a few links because I am not finished part 2 of my last post just yet and I did not want to start anything new. So without further delay...

Tonight's Links:

Brilliant cluster headache information. I will be adding this one as a permanent link. Check it out!PreventDisease.com. .

Tons of Medical Links. Check here for even more Categorized Medical Links at the same site.

Pain.com. I cannot believe I just found this! Another permanent link.

To help all you extroverts to understand the Introverted youth have deep roots for behaviour rest of us.

Not cluster related but information everyone should have. Map Sex Offenders with the power of Google Maps. It is free but only for finding scum in the USA only. If anyone has knows of something like this for Canada, do not hesitate to post the link or send an email to my email.

Paul
Time has been transformed, and we have changed; it has advanced and set us in motion; it has unveiled its face, inspiring us with bewilderment and exhilaration.
-Kahlil Gibran

Medication Gauntlet Part 1 of ?

2005-11-25T23:59:00.000-08:00

I thought writing about how my medical hell that started 4 years up till this point might be a good way for others to get to know what living with cluster headaches are like. I will be going by my old journals, dr. reports, some audio tapes, notes and memory. Hopefully this will turn out well. Lately I have lost the motivation to typical daily blog postings and am looking to do something a little more in depth. I'll start off how my life was prior to diagnoses. Treatments tried/failed. Complications with friends, family, relationship and so on. Basically how cluster headaches have affected my life.

In past 4 year I have had gone through what can only be described as the 'medical gauntlet'. With the hope a single or combination of medications or treatments will allow me to live a relatively pain-free lifestyle. Initial I had hoped, like so many before me, the cluster headaches and epilepsy would go away as quickly as they arrived. Remember, at this time neither one was diagnosed. I was hoped a reduced stress lifestyle would stop whatever was happening to me.

This unique combination of chronic cluster headaches intertwined with epilepsy made diagnoses extremely challenging. But the only way my doctor(s) wanted to find a diagnosis involved a prescription pad intially. Fair enough. Besides, the pain had sent my body into a state of exhaustion. Not being allowed to sleep and too sore to eat. At this point I was quite willing to give up all together.

The thought at the time was the attacks 'atypical migraines with aura'. This would explain the bluish-green spots, the sensitivity to light & sounds. However, the highly localized pain burning sensation in my left eye did not fit the conclusion. Hence the reason 'atypical' was thrown in there, just to be on the safe side I guess. For some reason, the fact that was never taken into account until much, much later. Being awoken during a deep sleep is an indicator to distinguish between migraines and clusters headaches. Migrainers can usually stay in a deep sleep. There are exceptions to every rule of course.

However for myself literally on a nightly basis, a horrific torment caused me to be suddenly awakened out of a deep slumber, screaming, crying, and pounding my fist into the pillow or onto my head. Anything which was rounded and could be push onto my eye socket was used. Glasses, mugs, telephone receivers, cans, fists, ice packs and anything else within my grasp. Sometimes I would go to extremes to get the slightest bit of relief or refocusing my attention. Even bashing my head into the wall. Hence one of the nicknames for cluster sufferers... Headbangers. Sounds nuts I know.

The pain is like nothing imaginable and cannot even be wished upon one's worst enemy. When that avenue for relief did not seem to help me enough, I went to down a different path. I made the pain more intense. To the point when I would not be able to remember what I had gone through the day before. Habits like smoking and drinking are sure fire ways to induce an attack and more it even worse. Every once in awhile I am asked why I would do a crazy thing like make the situation worse. My answer is simple I didn't have any choice. No one would believe me. I was not able to a restful sleep for months and unable to work. My personality changed. Not for the better. And I hope I never, ever hear someone say 'well, everyone gets headaches. Deal with it'(paraphrasing) again!

To be continued....

Paul
Courage doesn't always roar. Sometimes courage is that little voice at the end of the day that says: "I'll try again tomorrow."
-Anne Hunninghake

Too much data for a Blog

2005-11-16T20:59:00.000-08:00

In my last post I was hoping to an in depth article about the pros and cons of use of opioids in the treatment of cluster headaches and chronic pain. However, the article would be a more monumental task than originally thought, at least to put in a blog. What I will probably do is make a number of short articles over a number of days/weeks instead of one excessively long post. What I will to do is present as many facts as needed to help others to understand this class of medication with links to appropriate sites, book bios etc to back up what I write. I will not take a pro or con approach. The more facts chronic pain sufferers have at our disposal the better we can make informed choices with regards to our treatment.

Internet Handbook of Neurology pain resource page. Hugely abundant resource on everything from the management and treat of chronic/acute pain to causes of general and specific varieties of pain. All I can say is Amazing!

If Dr. Seuss wrote for Star Trek: The Next Generation. Like I'm the only Star Trek geek out there;)

Can you trust the cd's you bought made by Sony? Time for a boycott! Since money is all they care about. Sure a hell isn't 'protecting' musicians from individuals pirating their music. Boycott... boycott... boycott...

Just for Fun

2005-11-09T13:48:00.000-08:00

The whole of my time since the last post has been spent under cluster cycle. So I thought it might be a good time to share some time wasting links with everyone. Plus I am working on post about a pet peeve of mine, the ignorance and fear of opiates for use in chronic pain. I will try to help other understand what "dependence vs addiction" means.

Here are some amusing links I came across during my cycle.

Ever wonder if your intake of caffeine is too much? Check out Death by Caffeine. Plus a study about how caffeine varies wildly (more FYI than anything else).

Ever seen rose frozen by Liquid Nitrogen then shot and captured with a high-speed camera? Absolutely Amazing!

I will be adding a few more as the day goes on after I finish some works around the apartment.

Paul

The most wasted of all our days are those in which we have not laughed
-Sebastien Chamfort