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Topic: Epileptic drugs (Read 365 times) |
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Nige
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Epileptic drugs
« on: Jan 15th, 2004, 6:50am » |
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It has been 12 months since my last attack yipee. However I still search for the cure for next time. Although I remain posotive that there wont be a next time, yeah ,yeah.
Anyway has anyone any experience of the use of Epilectic drugs such Epilim (sodium valprate). It all has something to do with interupting the electical signals.
Other drugs of the same ilk are Tegretol and Gabapentin.
Anyone????????????
p.s. Any get2gethers in the UK
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ave
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Re: Epileptic drugs
« Reply #1 on: Jan 15th, 2004, 7:05am » |
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I was given tegretol for my clusters. Did nothing for me but turn me into a zombie for 9 months. I thought it work for it just happened my cluster period had finished. When it started up again, Tegretol did zilch fighting the pain. Never will either.
Check out the medication info on the left, under the buttons. Check out oxygen, the mainstay for many of us.
And check out this,
http://www.clusterheadaches.org.uk/
to find OUCH Uk, where they have annual meetings and get togethers, a message board and lots of info about dealing with the NHS.
Good luck.
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There is a break in reality. Do not adjust your mind.
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Nige
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Re: Epileptic drugs
« Reply #2 on: Jan 15th, 2004, 7:17am » |
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Thanks for that on Tegretol. I know all about the O2.
Iam a veteran of 30 years CH. Still searching for my Holy Grail.
Is PREDNISONE the USA version of Prednisolone. If so had that stuff a couple of years ago. Thought it was the cure....then it came back the Doc just kept uping the dose. It just made me fat with mood swings NEVER again for me it was an awfull drug.
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pubgirl
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Hi Nige
Yes, Prednisone is Prednisolone.
There is a meeting of clusterheads in March in Liverpool (last one was Hastings and the annual conference was in Birmingham)
As Ave says, you need to come and join us at OUCH UK as well!
Hope to see you over there
Wendy
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Bob_Johnson
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Re: Epileptic drugs
« Reply #4 on: Jan 15th, 2004, 8:32am » |
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The history of meds used for prevention is very uneven in terms of the rate of success and the percent of users who find them effective. This reflects just how much is not yet understood about Clusters--but it also leads us back to developing patience to try different drugs, at varying doses, until something clicks.
Since drug names differ as we cross the Atlantic, suggest you look for one of the drug sites (buttons on left) to find the U.S. name.
Also suggest you look at: www.headachedrugs.com for detailed information on meds. This site run by a headache specialist; good material.
As an abortive, I've had excellent success with olanzapine, 5mg. I has been reported in a couple of small trials as working quickly and consistently.
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Bob Johnson
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Nige
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I love YaBB 1G - SP1!
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Re: Epileptic drugs
« Reply #5 on: Jan 15th, 2004, 11:00am » |
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Hi Wendy
Liverpool is not a million miles away from me. Do you know dates and location.
Cheers
Nige
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pubgirl
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Nigel
There is quite a lot of info (there is a party the night before the meeting as well), but since you need to tell the organisers you are going if you are , and might enjoy it more if you met some of the people online beforehand, why don't you go over to OUCh UK and see the details there?
If for some reason you prefer not to, message me and I will copy the thread on the message board for you and send it.
Wendy
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