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New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Topamax
(Message started by: seventensplit710 on Jul 9th, 2002, 9:19pm)

Title: Topamax
Post by seventensplit710 on Jul 9th, 2002, 9:19pm
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?  

Title: Re: Topamax
Post by Ohmsx on Jul 10th, 2002, 12:16am
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%

Title: Re: Topamax
Post by paul m on Jul 11th, 2002, 10:53am
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

Title: Re: Topamax
Post by NotH20 on Jul 11th, 2002, 2:38pm
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

Title: Re: Topamax
Post by darwin101 on Jul 12th, 2002, 12:07pm
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....

Title: Re: Topamax
Post by Karla on Jul 16th, 2002, 2:48pm
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.

Title: Re: Topamax
Post by roro on Jul 29th, 2002, 4:15pm
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!

Title: Re: Topamax
Post by natas on Aug 1st, 2002, 4:05pm
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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