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Topic: My "cluster" headache experience - anyon (Read 331 times) |
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edgarecayce
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My "cluster" headache experience - anyon
« on: Sep 6th, 2005, 8:23pm » |
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Hi I am new here.
I have had a problem with "cluster" headaches since mid 2002. I put cluster in quotation marks because, while my neurologist says it is a cluster headache, it does not seem to match the sympoms I see listed on many website and in the "cluster quiz" on this site.
I am hoping to find out if anyone has had a similar experience to me.
In July of 2002 I started to notice a very mild headache, near the back of my head, not specific to either side. It did not come and go - it was steady; there when I woke up and there when I went to bed. At first it was so mild that I did not think much of it. But it got gradually worse every day. By mid-August, it was starting to be debilitating and causing me to miss work.
Having no health insurance, and being rather broke, I did not feel like I had many options - I just hoped it would get better. Aspirin, Tylenol, Advil, nothing I tried seemed to affect this headache at all.
It got so bad that I worried I must have some sort of tumor, and I finally took myself to the emergency room - where they gave me some morphine to ease the pain - that made me puke! And they did a MRI to see if anything was wrong. They saw nothing, gave me a scrip for Vicadin and sent me home. They advised I see a neurologist. This little trip resulted in a $6,000 medical bill for the MRI and ER visit. And no help. Lovely.
The Vicadin helped a little bit but gave me rebound headaches.
A friend recommended I try acupuncture. That did nothing. Another friend said see a chiropractor. No help there.
A week later it hurt so bad I was in the emergency room again. They gave me more morphine but could not do much else. They gave me a prescription for Imitrex. How suprised was I when I found out it's $35 a pill! So I filled the scrip for just 2 pills. They did ABSOLUTELY NOTHING. More money down the drain, unpayable hospital bills and me, an independant contractor, unable to work.
All this time this headache has been getting worse and worse. At this point, it is like a jackhammer at the base of my skull and all I can do is lay in bed with an ice pack under my head. Could not sleep, drive, work, read, do anything but lay in bed and moan.
Again, this is just one, big, long headache. It did not come and go. There were no "attacks" or moments of reprieve. It was not worse or better at different times of the day.
A friend found a reference to a Dr. William Chow at Cedar Sinai Hospital, and said he was one of the best. His appt list was booked for months but I was able to swing a walk-in. More like a crawl-in; I was in so much pain I threw up in the parking lot.
Dr. Chow said it was a "cluster headache" and put me on Depakote - 4 big horse pills per day, (800 mg I think) with regular blood tests. Luckily, Dr. Chow had some sample pills that he gave me, because they cost $2 a piece, and I had to take 4 a day. With the Depakote, the headache started to subside. It took almost 2 months before the pain was gone.
He then switched me over to Elavil (amitriptyline), 50mg. I have been taking that ever since. As long as I take it in the evening, the headache does not come back. If I miss a few days, I can feel it creeping back. I skip some days, because the Elavil makes me really groggy - even if I take it pretty early in the evening, I am all groggy and sleepy the next morning.
It has been 3 years now - and Dr. Chow says that, by the time I am 40 it will probably go away on its own (I just turned 35).
It troubles me that this just came up of its own, with no warning or any explanation of what caused it. Also I worry that if I ever get in a situation where I dont get my meds, I will be in big trouble - but the Elavil is cheap, and works, so I guess its not that bad.
My doctor says it is a cluster headache - but, when I read about cluster headaches, they talk about attacks and episodes, and pain clustered around the eyes, etc. I cannot find anywhere, symptoms like I experienced, where it is just one big long neverending headache.
Has anyone had an experience like this?
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edgarecayce
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Re: My "cluster" headache experience - a
« Reply #1 on: Sep 6th, 2005, 8:30pm » |
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OOh - forgot to mention - the Depakote made me FAT! I have always been a skinny, bony guy (5'8" 125 lbs) and after a few months of the Depakote I was 155 pounds! I had to buy all new pants.
After stopping the Depakote I dropped down to 145... no big deal... but I have a pot-belly now and never had that before.
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don
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Re: My "cluster" headache experience - a
« Reply #2 on: Sep 6th, 2005, 8:48pm » |
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Personally
I would say ciao to Chow
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unsolved1
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Re: My "cluster" headache experience - a
« Reply #3 on: Sep 6th, 2005, 8:58pm » |
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Does not sound like cluster headaches to me 
UNsolved
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E-Double
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Re: My "cluster" headache experience - a
« Reply #4 on: Sep 6th, 2005, 8:59pm » |
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Definitely not cluster headache!
If you want to read up on the diagnostic criterai for "all" known headache types read through this and see if ya fit any of them. It is the International Headache Society's guidelines
http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pd f
Good luck and sorry you are in pain!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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paul_pero
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Re: My "cluster" headache experience - a
« Reply #5 on: Sep 7th, 2005, 7:46am » |
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Sorry to hear your story
To me it seems you need to find another doctor who will try and find what is exactly happening to you. I don't think its CH.
I couldn't believe how much your trip to ER cost. In Australia it would have been free or pretty cheap. I saw a neuro this year $200 for half an hour, but got $110 back from government.
At least you have found meds to ease the pain.
Good luck
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wip5150
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Re: My "cluster" headache experience - a
« Reply #6 on: Sep 7th, 2005, 9:14am » |
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I agree with everyone above - I don't think you have cluster headaches.
And, if I weighed 145 pounds I think I would blow away 
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Ever dance with the devil in the pale moonlight? I have, and man it hurts
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Salvelinus
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Re: My "cluster" headache experience - a
« Reply #7 on: Sep 7th, 2005, 8:06pm » |
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I don't think you have clusters. Sounds more like migraine to me. Especially because of the vomiting, the long duration, and the fact that amitryptilene (Elavil) works for you. That drug is very effective for migraine, but does nothing for clusters. I was on it for a while, but it didn't help me at all, except that I slept much better, and had dreams for the first time in years. I had a lot of problems with side effects, too. Increased appetite was the minor one. The more serious ones were severe tremor, constipation, urinary retention, terrible cottonmouth and difficulty thinking.
I'm really glad you have found relief. As long as you have found something that works, I'd say continue it. 
Namaste,
--Scott
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Namaste,
--Scott ><>
"When no one else knows how I feel,
You run to me, with outstretched hands,
and you hold me in your arms.
Again."
--Building 429
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edgarecayce
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Re: My "cluster" headache experience - a
« Reply #8 on: Sep 7th, 2005, 10:34pm » |
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Hey thanks for all the responses. You folks are great.
I will check more into migraine websites.
Ed
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