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Topic: Old sufferer...New to the boards (Read 272 times) |
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Doc_Hoof
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I love YaBB 1G - SP1!
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Old sufferer...New to the boards
« on: Jul 9th, 2007, 2:44am » |
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Lets see, I have had cluster headaches for the better part of 17 years. At the first onset of the headaches at 20 years ago, a doctor misdiagnosed the symptoms and classified them as "recurring photo sensitivity due to bacterial meningitis" I had at age 12. Theory seemed to work for a number of years...As long as I wore dark sunglasses, I was in remission or so it seemed. They would come for a day or two and be gone for weeks or months. I simply filed this as I forgot or didn't get my sunglasses on in time. About 5 years ago, I went to the Veterans Admin. hospital in Salt Lake City after having suffered through at that time the longest bout ever at three weeks. Doctor said they were cluster headaches...I was starting to get one right then luckily...At least that's what the doctor told me. Radiographs and catscans were taken while the pain was evident and darn near killing me. After several doctors poked and prodded, they came to the conclusion they were definitely cluster headaches. During the last visit, I was given oxygen to try while at the hospital...WOOHOOO! Worst headache ever spilt my head right down the middle within a matter of seconds from turning on the oxygen. Doctors being perplexed and not fully describing what cluster headaches were made me doubt the diagnosis and call them quacks as I covered my right eye and left the hospital. I went on just dealing with the pain...Heck, I rode bulls professionally for a living and pain was just a side effect of my lifestyle. Over the past 4 years, there have been numerous episodes, but they generally last 3 days to a week and off they go for a while. Over the past 4 months, they have become almost unbearable ranging from one a day to sometimes 5 a day, but the constant is I will get a t least one a day...Guaranteed. I've tried Tylenol, Advil, Aleve, and just about every pain med a person can legally buy without a prescription...And even some others I won't admit to here. But yet, nothing seems to work every time. One day Tylenol works, next day it doesn't. I'm not a druggy looking for drugs, but can honestly say the ONLY thing that has worked EVERY time has been Lortabs. Being fellow sufferers, you can imagine the quizzical looks I get when I go to a doctor and say, "I need a strong narcotic drug for headaches." I just pray that one day I will find relief again and get a full nights sleep without wanting to go outside and bang my head against the brick wall because it hurts like hell too, but at least the bleeding makes me concentrate on something other than the headaches.
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seasonalboomer
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If I think hard enough maybe it'll go away.....
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Re: Old sufferer...New to the boards
« Reply #1 on: Jul 9th, 2007, 6:14am » |
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Go to your doctor or neuro and get Oxygen with a regulator that will deliver 12-15 lpm and non-rebreather mask. Also have him prescribe Imitrex injections. Your life wil be changed.
Scot
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seasonal boomer
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Shedz
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Re: Old sufferer...New to the boards
« Reply #2 on: Jul 9th, 2007, 7:46am » |
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Oxygen oxygen oxygen....... 
Welcome aboard chap....... oxygen.
Wishing you PFDAN's chap
Paul.
now go get some 02 
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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 just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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Bob_Johnson
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Re: Old sufferer...New to the boards
« Reply #3 on: Jul 9th, 2007, 8:41am » |
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Since we know nothing about your docs' knowledge/skill with CH and they did not prescribe any of the usual meds to prevent and abort attacks--let's assume everyone needs some guidance.
The advantage of both you and you docs talking about this document is that it gives you some common/meeting ground to discuss/find a more effective treatment plan.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Bob Johnson
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Guiseppi
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Re: Old sufferer...New to the boards
« Reply #4 on: Jul 9th, 2007, 10:16am » |
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Bob's link is definitely your starting off point for educating you and your doctor....then get oxygen! Still my number one abort going on 30 years.
I went thru the whole narcotic regimen too, very close to worthless for me. Caused me far more problems then they ever solved. Welcome to the board, hope we can provide some useful info for you.
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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southwalessunshine
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Re: Old sufferer...New to the boards
« Reply #5 on: Jul 9th, 2007, 3:29pm » |
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I'm new here too, after about 14 yrs of suffering I found this awesome site today. I hope we both get some answers here and more importantly, support.
I have read over and over that oxygen is amazing. But Shedz, how do I get it in the Uk? Must i go it alone or can i get it throught he doc? i've never had it suggested before but am willing to try anything.
Shaynie x
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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