Want to Watch?

Tuesday, October 25, 2005


Ever watched a cluster sufferer during an attack? No? Well have I got a treat for you. Clusterbusters.com has been nice enough to post just that. Click on the clusterbuster.com link, and scroll down till you come to a heading titled "Warning" in red letters. The clip is quite graphic in the sense of seeing someone in extreme pain. There is no gore but high intensity pain can be a test of one's stomach. After you have a watch, try to imagine multiple attacks a day for days, weeks, and in some cases years without relief. I hope by sharing this video will help people to understand what sufferers and those around them go through on a regular basis. Comments are always welcome and do not forget to pass the clips around.

The video is available in 2 formats, QuickTime(mov) and windows media player(wmv) and are 6mb and 7.6mb respectively. To save the clips (Recommended) instead of watching directly off the site, with

1. Internet Explorer, "right click and select Save Target As".
2. Firefox, "right click and select Save Link As". This will help make playback as smooth as possible.

Paul
The world is quickly bored by the recital of misfortune and willingly avoids the sight of distress.
-W. Somerset Maugham

0 comments

Worthy of a Nickname

Sunday, October 23, 2005


Almost a month has gone by since my initial dose of 25mg of Topamax. The journey so far is mixed. The pain is not gone. However, I no longer have to battle multiple pain several times a days to have a 'good day' as it were. Strangely, the pain even buggered off for days at a time. Long enough to forget what a cycle felt like. Scary thought that is. Forgetting the pain level of a cluster headache. The next bout caught me completely off guard. Still forgetting about them all together would not be such a bad thing.

The major problem I am having is with the side effects. There are too many and they continue to linger. Bad enough I most likely will have to give up Topamax. Or as some cluster suffers have started calling it, 'Dopamax'. If not for the excitement from the lack of pain I would be asleep most of the time. I can not believe this is happening. I finally find a drug combination which works after 4 years of trial and error and I will have to give it up. Tell you the truth I am not totally surprised. Topamax was one of the first medications tried but that did not last long. The side effects were as bad then as they are now. My doctors visit after my last post was interesting. He was quite eager to stop the treatment. Only my pleading allowed me a few more weeks with it. Side effects can take bit for the body to adjust. Especially when they work on the brain.

At least I had some time away from the pain. Gave me the first real chance I have had in 4 years to wander through my thoughts. They were clear, not dark and murky as when the pain is burying me. Even thought what the rest of my life would be like without clusters. Now that seems it will to be more of a fantasy than a true story.

Paul

The human tendency prefers familiar horrors to unknown delights
-Fred Woodworth

2 comments

Not bad at all

Friday, October 14, 2005


Well the past couple of days have been the worst since the addition of Topamax to my daily diet. The pain, like all clusters was unbearable. Somehow after a rare break from hell, cluster headaches always seem to come back even stronger than before. Making it seem like my very first attack. An experience I will never forget.Completely unprepared for that level of pain and not sure what to do. Sometimes a steady stream of pain can be easier on the mind. I named the sudden cycle after a pain-free or manageable period my 'wake up call'. For the simple reason, the mind forgets, thankfully, and then tricks me to thinking I may be rid of this dreadful ailment for good. Of course anytime I spend with out pain is exciting even if I am only using the 'free time' to catch up on some house work. Much rather be doing...well, almost anything except going through a long, drawn out cluster cycle. Still 3 days instead of every day is a welcomed change. As for them not disappearing, a little hope, patience, a drop of luck and a whole bunch of support will get me through it.

I have a appointment with the doctor next week. Most likely he will up Topamax and maybe lower some of these other meds. Getting a little tired of all the pills. The less medications altering my brain chemistry the better. Somebody tell me why every medication, excluding a couple of classes, cause drowsiness? Time for a medication without side effects. Doubt that will happen in the near future. One day perhaps. I know. I am living in a dream would. I could go on a huge rant about medications, drugs company's, testing and so on but not tonight. Need to make sure all my information is 100% accurate. Here is a question I would love to know the exact answer to. What percentage of medications actually stop an illness and do not just treat the symptoms? From what I have heard the number is around 15%. That appears reasonable to me though I can not find numbers or a web page stating this. I have heard numbers as low as 10% and as high as 35%. If you insight on this please Email Me or leave a note in my Guest Book at the bottom of the page. Don't be afraid to leave a comment or a question in there till I get the comments working. With any luck that will be in the next day or two.

Paul
Without accepting the fact that everything changes, we cannot find perfect composure. But unfortunately, although it is true, it is difficult for us to accept it. Because we cannot accept the truth of transience, we suffer.
-Shunryu Suzuki

Upate: the comments should be working now. Give it a go and let me know what you think.

1 comments

Finally Some Relief!

Wednesday, October 05, 2005


Almost 4 years since the start of my very own personal hell, relief has finally arrived. With the medication Topamax having been added to the cocktail of drugs, it seems to be the final piece to the puzzle. I would like to say I have been pain free or without side effects but I have only been on Topamax for 10 days or so. Perhaps a little longer. To what extent this will work out I do not know but a week of relief is more than worth it to me.

The other day I was instructed by my dr. to raise the dosage from 25mg to 50mg. Right now sleepiness has been a big problem since the introduction of Topamax. How it will adjust to this new dosage only time will tell. My body could be recovering from all the sleepless nights devoted solely to the pain of cluster headaches. The only other side effect, if it can be called that is I talk in my sleep now. And this morning I even spat in my sleep. Gross, huh? That is a new one for me. Guess that is what happens when we play with the brains chemistry. Still, the lack of pain helps ease the process.

Paul
Two roads diverged in a wood, and I took
the one less traveled by, And that
has made all the difference.

-Robert Frost

0 comments

The same, yet changed

Wednesday, September 28, 2005


Well despite all hours of packing, planning, restless nights worrying about whether or not we could find a place we could both good agree on within our price range. We decided not to move. Not so much compromised as I caved in to staying because Mindy likes the area. Even though the apartment, excessive noise, drugs and so forth cause me real pain and for the most I am not proud our place. For me that is important. The place I call home doesn't need to be luxurious but more of an extension of my personality. Where my stress will not be raise higher when I enter but rather allow me to know that there is a place I can unwind, study, tidy or whatever the case maybe. Lowering stress will aid in the battle with my chronic cluster headaches. Never thought we would be here for over 2 years. There have been some many times that we have been 'going to move' yet I backed off for various reasons. I admit the prospect of moving is not in my 'Top 10' list but the ends justifies the means.

I have no idea where I was going with that. Not even cluster related. Unless you count all this stress triggering my clusters. My neurologist started me on Topamax, for the second time, a couple of days ago and my thoughts have become a tad disjointed. Last time the side-effect were too much for me. Topamax was one of the first medications I was prescribed before I there was any diagnoses. Maybe this time with my current drug cocktail the clusters and seizures will decrease even further. At least decrease them enough to regain a little bit of independence back and hopefully some dignity will come back as well. That is the hope anyways. Worst case scenario is I will break out in blemishes and become excessively tired again. Sounds like fun, doesn't it

Paul

Women and cats will do as they please,
and men and dogs should relax
and get used to the idea.

- Robert A. Heinlein

1 comments
Medical terminology can cause confusion at the best of times. If there is a word you do not understand all you have to do is double-click on it and the definition will appear! Don't forget to drop me a line by email at versilleus@gmail.com with your comments, questions‚ recommended resources‚ concerns‚ & especially your experiences with clusters. Or come find me on my Facebook Profile to add me as a Friend. Whether you are a supporter‚ care-giver or sufferer. I would love to hear from you!

*Please do not use this information for self diagnoses. Writing about my experiences with chronic cluster headaches & epilepsy is a good outlet for me. Consult your Dr. with any kind of headache or chronic pain you may have. The 3rd party links on my site I have found to be a good resource to me over the past few years & dearly hope they will benefit you as well.*


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