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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Steroids/Topamax?
        
(Message started by: downstairs on Jan 24th, 2007, 1:35pm)
Title: Steroids/Topamax?
Post by downstairs on Jan 24th, 2007, 1:35pm
I finally got to see a neuro.  He perscribed me Topamax, apparently a steroid.  In pills.  Its tapered to start... one per day for a week, then two per day, then three, etc.

Anyone have experience with this drug, or steroids in general for CH?  I am in a cycle right now... about 2 1/2 weeks in.  It's my first cycle, so I have no idea how long I'd expect it to go anyway.

Curious on experiences, thoughts...
Title: Re: Steroids/Topamax?
Post by vietvet2tours on Jan 24th, 2007, 2:18pm
It's not a steroid but an ant-convulsant
Title: Re: Steroids/Topamax?
Post by downstairs on Jan 24th, 2007, 2:24pm

on 01/24/07 at 14:18:34, vietvet2tours wrote:
It's not a steroid but an ant-convulsant


Ok, he called it a steroid... but who knows :)

Anyway... any thoughts/experiences with this or other anti-convulsants
Title: Re: Steroids/Topamax?
Post by vietvet2tours on Jan 24th, 2007, 3:01pm
How bout a big blast of oxygen?
Title: Re: Steroids/Topamax?
Post by jeffr on Jan 24th, 2007, 5:37pm
hey everyone jeffr here. I just returned home from my first neurology appt. the doc. is changing my medication I was on 360 mg verapmil he now is perscribing topamax, prednisone 20mg and lorcet plus. he is also insisting i use my imitrex and not goody powder any words of wisdom .  [smiley=huh.gif]
Title: Re: Steroids/Topamax?
Post by vietvet2tours on Jan 24th, 2007, 5:54pm

on 01/24/07 at 17:37:20, jeffr wrote:
hey everyone jeffr here. I just returned home from my first neurology appt. the doc. is changing my medication I was on 360 mg verapmil he now is perscribing topamax, prednisone 20mg and lorcet plus. he is also insisting i use my imitrex and not goody powder any words of wisdom .  [smiley=huh.gif]
Ummmmmmmmmm see above
Title: Re: Steroids/Topamax?
Post by 5yearsteve on Jan 24th, 2007, 8:30pm
Topomax seems to do good for some people. For me It was bad. I had a constant ache behind my left eye and my neuro at the time had me quite taking it. It might work good for you. I would give it a try and see. Sometimes it takes quite a few hit and misses before the right combo of meds if found for a particular person.  
Title: Re: Steroids/Topamax?
Post by midwestbeth on Jan 24th, 2007, 8:44pm
Do some reading on this site about the different meds your Dr Rx.  You can also go to webmd to educate yourself about the meds you are taking.  Get all the info you can about side effects and different interactions that can happen when mixing meds with taurine, herbs, foods and other meds, etc.  
Title: Re: Steroids/Topamax?
Post by jeffr on Jan 25th, 2007, 7:06pm
thanks steve & beth for your response done some looking will keep going.
Title: Re: Steroids/Topamax?
Post by robinr on Jan 25th, 2007, 7:07pm

on 01/24/07 at 17:54:28, vietvet2tours wrote:
Ummmmmmmmmm see above



I do thank those of you who have tried to answer Jeff's (and our) SPECIFIC questions.

I fail to appreciate people who skirt around legitimate questions of new people here who are only trying to find help to promote what works for you. >:(

Jeff didn't ask about O2, he asked about Topamax and Prednisone, as that's what the new MD perscribed. Do we want and need help? YES!

Does that involve helping us with specific questions? YES!!!!!!!!!

So anyway, thanks to those who have tried to help. We are so new here, and like maybe some of you were so new at this site at sometime in the past, we hope to find real help and get good answers here. While we are aware of O2 (and while I would like for Jeff to try this approach rather than load up on all these nasty drugs), we're weaving our way through this and trying to get Jeff some relief. And for now, Jeff has questions about the combination of drugs the new MD has perscribed.

So, again, thanks to those of you who have tried to address his specific questions. We really do need your help.

robinr--jeffr's wife.
Title: Re: Steroids/Topamax?
Post by 5yearsteve on Jan 25th, 2007, 9:41pm
Welcome to the board jeff and robin r. I am new here also but not to CH. I just noticed that "downstairs" started this thread. Why dont ya go ahead and start another thread and maybe we could give you more specific info tailored to answer your questions. Sometimes it gets a little confusing when 2 posters are hunting for the same info on 1 thread.
Title: Re: Steroids/Topamax?
Post by vietvet2tours on Jan 26th, 2007, 12:02am

on 01/25/07 at 19:07:09, robinr wrote:
I do thank those of you who have tried to answer Jeff's (and our) SPECIFIC questions.

I fail to appreciate people who skirt around legitimate questions of new people here who are only trying to find help to promote what works for you. >:(

Jeff didn't ask about O2, he asked about Topamax and Prednisone, as that's what the new MD perscribed. Do we want and need help? YES!

Does that involve helping us with specific questions? YES!!!!!!!!!

So anyway, thanks to those who have tried to help. We are so new here, and like maybe some of you were so new at this site at sometime in the past, we hope to find real help and get good answers here. While we are aware of O2 (and while I would like for Jeff to try this approach rather than load up on all these nasty drugs), we're weaving our way through this and trying to get Jeff some relief. And for now, Jeff has questions about the combination of drugs the new MD has perscribed.

So, again, thanks to those of you who have tried to address his specific questions. We really do need your help.

robinr--jeffr's wife.
Sorry bout yer luck.
Title: Re: Steroids/Topamax?
Post by Richr8 on Jan 26th, 2007, 6:57am

on 01/24/07 at 17:37:20, jeffr wrote:
hey everyone jeffr here. I just returned home from my first neurology appt. the doc. is changing my medication I was on 360 mg verapmil he now is perscribing topamax, prednisone 20mg and lorcet plus. he is also insisting i use my imitrex and not goody powder any words of wisdom .  [smiley=huh.gif]


Done them all, and the only thing that seems to make a difference is a pred taper.  It will break my cycle after a week to ten day taper. Unfortuantely, prednisone and I do not mix well and the negative side effects are totally unacceptable to me.  

Well this year for the first time in 15 years of suffering I went totally med free and tried RC seeds. There has been no, or little, difference in frequency or with sleep deprivation issues, but so far nothing over a Kip 6.  Oxygen aborts 90% of them in 5 minutes or less, however, sleep dep remains a problem.  Between hits, and when I have a decent night sleep (very rare right now), I feel normal again almost immediately.  No long recovery period and I am not comatose from the side effects of all the meds.  A very definite improvement over prior years.  I only wish I knew when it would end.
Title: Re: Steroids/Topamax?
Post by Karla on Jan 26th, 2007, 8:40am
Your dose of verapamil was a bit low to give up on it unless it was due to side effects.  I tried up to 960mg/day for a while before I hit side effects.  A lot of people here have really high doses like that and find relief.  I also tried up to 600mg of topamax.  Most people try 400mg and quit but I saw a ha specialist in a ha clinic and we were desperate to find something to work.  It is important that you slowly incriment the topamax by 25 mg every week or two.  If you go up to fast you may get kidney stones.  No fun!!  This medicine is dubed "Dopamax" because it makes you forget everything and your lucky if you can remember your name.  Good luck.  It is an anticonvulsant and mood stabalizer, and also used for migraine and ch patients.
Both of these meds can have some nasty side effects that is why we recomend you try oxygen over these meds or in addition to them.


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