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Cluster Headache Help and Support >> Getting to Know Ya >> New to CH.com http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1232457163 Message started by vince on Jan 20th, 2009 at 8:12am |
Title: New to CH.com Post by vince on Jan 20th, 2009 at 8:12am
Hi, been lurking for a while, reading posts.
I'm from the UK and have had ECH for about 8 yrs and Migraine for 25. Have tried a variety of stuff, and currently taking: Verapamil O2 and Imigran. I am currently 'enjoying' nightly visits from the Beast. After 8 yrs saw a specialist nurse last week (referred by my neuro) who did and Occipital Nerve block injection (first time it's been offered). Doesn't seem to have done anything yet, anyone had any successes? Fingers crossed. take care Vince |
Title: Re: New to CH.com Post by Iddy on Jan 20th, 2009 at 8:51am
Hi Vince welcome to your new home.
There are many great people here with greater knowledge than I who you will hear from. It sounds like you have the proper ammo to fight the beast. Cheers hope for PFD :) |
Title: Re: New to CH.com Post by Guiseppi on Jan 20th, 2009 at 9:40am
Welcome to the board, I haven't tried the nerve block route, several on the board have, hopefully they'll chime in shortly. Is the oxygen effective at aborting your attacks? The key is to get pure 02 into your lungs as soon as the attack starts. Best accomplished using a Non Re Breather Mask and a high flow regulator, at least 15 LPM or higher.
Bob's given you some awesome reading, the latest and greatest in what's working. Welcome to the nut house! ;) Joe |
Title: Re: New to CH.com Post by vince on Jan 20th, 2009 at 12:29pm
Thanks for the welcome. Will read the details.
Have had Oxygen for my last three episodes and it is better than not having, it doesn't always work (probably delay in starting). Wish I could take it everywhere with me! Reading the list of drugs I have been on: Topiramate (prescribed for migraine,very bad reactions memory loss, dizziness etc) Prednisone (at onset of episode, tapering dose) Methysergide (prescribed for migraine, no great effect) and loads of stuff for migraine (pizotofen, amytriptline, propanalol, epilim, etc.) Nasal sprays Zomig. Read loads of similar experiences. My wife read some posts and said 'That sounds like you', she and the kids are really supportive but I think there must have always been some doubt. The kids are great, my daughter gives me three kisses on the head every night to 'make my head safe', she's 4. Ta Vince |
Title: Re: New to CH.com Post by Linda_Howell on Jan 20th, 2009 at 12:38pm Quote:
THAT is absolutely adorable !!! |
Title: Re: New to CH.com Post by UnderTheRadar on Jan 20th, 2009 at 5:45pm
Welcome home, man...it's your new second family here! ;)
What have you found to be effective (if anything) for the migraines? (I'm in the same boat.) And does your migraine change while in cycle? -Paige |
Title: Re: New to CH.com Post by vince on Jan 21st, 2009 at 12:33pm
Hi Paige,
Have tried loads of stuff for Migraines: Sanomigran (Pizotofen) - worked for a while but weight gain was bad Amytriptyline - Did nothing Propanolol - made me feel weak and tired, didn't work. Sodium Valproate (Epilim) - didn't feel good while taking. Topirimate - really bad reaction, memory loss, dizziness. Methysergide - reduced migraines a bit, but felt less able to cope because of the on/off scenario to avoid sideffects. Also done elimination diets, was great whilst eating basically nothing, introduced new inidividuals food items and found no triggers, gave up before I could get to combinations (6mnths of crap food was enough). Done acupuncture which worked more for the neuralgia than the migraine but after a year it got on my nerves, couldn't cope laying there once a week for an hour (more invasive than I wanted with an hour drive each way) Currently taking nothing for Migraine and usualy have 1-2 a week. Weirdly I don't have migraine during cluster cycles, which is fine by me. What do you do for migraine? Does it work? Vince |
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