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Topic: Topamax (Read 404 times) |
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Lisa116
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Hello all,
Well the reason why I am writing is my neurologist put me on Topamax and all I've read here are horror stories about this drug. Has Topamax actually worked for anyone and if so, do you remember how high the dosage was when it finally started to work?
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Ohmsx
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710, I've not tried it (or any preventative, they scare me) but I copied this from the meds link on the left and eliminated the haven't trieds- hope it helps.
Topamax (preventative)
Aborts every cycle 03.3%
Definately works every cycle 02.9%
Seems to work every cycle 12.8%
Works some cycles, not others 19.0%
Did NOT work 61.9%
Get relief from Topamax
Within 1-2 days 04.9%
Within 3-4 days 03.1%
Within the first week 13.8%
Took more than a week 17.0%
Tried, but didn't work 61.2%
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| « Last Edit: Jul 10th, 2002, 12:25am by Ohmsx » |
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paul m
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Im 48 yr old male have beem chronic for about 6 years, have tried many drugs. most dont do anything some fool the beast for for some time but he finds a way around it. this seems the case with the the Topamax. started at 25mgs increacing 25mgs at 7 day int. at 75mg chs decreased to every outher day, week four 100 mg went 7 days no ch. longest pain free ever thought I had the beast beaten. then POW . week 5 chs back to every other day. last 5 days almost every night, Idont think Topamax is goimg to work.
Im going to see neur on23rd going to see if he has any other sugestions. good luck
paul m
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NotH20
New Board Hall of Famer
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Posts: 778
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Re: Topamax
« Reply #3 on: Jul 11th, 2002, 2:38pm » |
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Hey 710 - I'm sorry to hear that you are in such pain right now. I was Topomax at the beginning of the year - was on it along with Keppra, Verap and some abortives (injections, Maxalt, Zomig and O2)....Yes I felt really drugged between the 2 anti-seizure meds. It did work for me, but I believe that it was in conjunction with the DHE treatment I had. I think the DHE stopped the cycle and the Topomax kept them away...
Good luck to you,
NotH20
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darwin101
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I take topomax during cycles-- 200 mg each night before bed. It works great for the clusters, though depending on how long your cycle is, the side effects can be a little weird-- I drop about 25 pounds during the first month, and by the end of the second, I loose track of words and my coordination is a bit off-- but, hell, it's worth it to not have the headaches....
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Karla
CH.com Alumnus
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One of Many and Never Alone - Join OUCH
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Posts: 3090
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Re: Topamax
« Reply #5 on: Jul 16th, 2002, 2:48pm » |
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I tried topamax at 200mg and it did nothing for me. However when I saw a neuro at a ha clinic he said you can go as high as 400 or 600 mg so that is what I am trying right now with the topamax.
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Karla
suffer chronic ch
ch.com groupie since 1999
Proud Mom of Chris USMC Semper Fi
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roro
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I've been looking for this topic. I've just started on this med and have no prior experience or knowledge of it. I will keep all posted.
I am starting at 30mg/ day for a week. I am to increase steadily over six weeks to arrive at a daily dosage of 400mg. I have not got htrough the first week yet and am in a cycle. I'm also taking other meds right now so I can't say how its doing. In the past after the cycle has past I have quit taking all meds. This time the doc wants me to continue with Topamax as a maintenance drug. So, god willing, the cycle will pass and I'll continue with the drug and we'll see how this goes.
This site has really changed since I was last here. One thing that hasn't is that CH really really sucks!
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natas
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Wow its been a long time since I have come to the board....I have been real busy so sorry guys. (I haven't been here since the forum changed).
Anyway my experience with Topomax was really good at first, then got to the point where it does nothing for me. So read below about my experience.
I started Topomax around the month of Decemeber of 2001. Started out with 2 25/mg pills a day then later moved up to 2 25's in the morning and 3 at night. FYI I have been chronic for 4 years.
The stuff worked so well the first 2 months. The first week it made no difference then all of the sudden after 3 weeks it kicks in and works great. In fact I went 3 weeks without a cluster. Then after those 3 weeks I would get maybe 2 a week (6-7's) at random times at night. Then a few weeks after that everything went downhill. I got what my doctor called a rebound effect on the drugs. I was getting 3-4 clusters at night (waking up with them like I did before I started the meds) and 2-3 between 11:30 and 3:00am.
So what am I doing now? Nothing. I got off the meds because they were having no effect on me. I got tired of being thirsty all the time and being sleepy and forgetting stuff. Since the meds made no difference I just stopped taking them. Doc says the only thing I can do now is get on Lithium and I refuse to get on that drug. Some may think its worth it...but I have personal reasons why I don't want to take it.
So now I am back to square one (well I still take imitrex)
The only advantage I got out of using the Topomax was the fact that I lost 25 pounds. Hah thats a alot of weight
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