A New Video
Saturday, April 02, 2011
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
0 comments
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
0 comments
Children with Migraines
Friday, April 01, 2011
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
0 comments
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
0 comments
It Sure Has Been Awhile
Monday, February 07, 2011
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
1 comments
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
1 comments
Easy ways to help make life better...
Monday, April 12, 2010
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
2 comments
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
Labels: Ways to help a sufferer
2 comments
Neurontin / Gabapentin lawsuit Back in Court
Wednesday, February 24, 2010
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
4 comments
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
Labels: Lawsuit, Neurontin / Gabapentin, Pfizer
4 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.*
