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Topic: topamax (Read 486 times) |
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bart
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was wondering what everyone could tell me about topamax. currently on verapamil-depakote-topamax mixture. having some success, but of course no cure.
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Barney
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Re: topamax
« Reply #1 on: Oct 27th, 2002, 3:04pm » |
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Have recently been prescribed Topamax - got no attacks for 8 days but then came off the medication due to severe reactions. I had pins and needles from head to foot and walked around in a total daze. Also, my blood pressure increased. In the end I felt worse on this drug than having the demon so aborted it's use. Don't let me put you off - what does not work for one person may be totally effective for another.
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Karla
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Re: topamax
« Reply #2 on: Oct 27th, 2002, 3:20pm » |
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I tried up to 600mg of this stuff and got no where with it. It did make me feel confused and effected my memory big time. Hope you have success with it, some have.
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Karla
suffer chronic ch
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Ueli
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Quote:
(I) was wondering what everyone could tell me about topamax.
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You must have nerves made of steel, Bart. You tell us not the slightest thing about yourself, not even if your male or female, but expect everyone to tell you something. 
The search button of this message board returns 74 post on Topomax. Could be, if you offer a reward high enough, somebody will read them on tape and then send it to you. 
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bart
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Re: topamax
« Reply #4 on: Oct 27th, 2002, 4:49pm » |
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ueli-i never once asked anyone for their life life story. i simply asked my info and/or opinions on a med. sorry that i offended you. this is exactly the reason i have a hard time getting into things like these because people jump down your throat. by the way....male-28-suffered for 15 years-what else do you want to know?
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Mark C
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Re: topamax
« Reply #5 on: Oct 27th, 2002, 7:03pm » |
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Welcome to the board Bart,
Don't let Ueli bother you , he really is harmless and can be quite helpfull, he just tends to be........... direct I guess is a good word ;D
I just stopped taking Topamax after about two weeks because of bad side effects and my head still hurt, but please remember we are all different and what may work for you may not work for me. I also had gastric problems with the Depacate, and Verapimil is on the short list of untried preventive meds for me. For now I rely mostly on abortives when the going gets rough.
The links on the left and the OUCH site are full of info relating to CH and have helped me in my treatment quite a bit.
Come on in and look around!
Mark
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bart
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Re: topamax
« Reply #6 on: Oct 27th, 2002, 7:43pm » |
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thanks for the advice. when i first started the verapamil-depakote dosage i had stomach trouble. my doc told me to take metamucil (sp) but i couldn't stand drinking that. at the time my wife was pregnant and the doc told her to take a vitamin called B6 for stomach trouble. i asked if it was safe for anyone and she said it was. i haven't had trouble since. maybe this might work for you. i've noticed today that i'm lighted headed quite a bit, is that something you experienced with this?
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Mark C
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Re: topamax
« Reply #7 on: Oct 27th, 2002, 8:24pm » |
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Look here Bart........................
http://www.ortho-mcneil.com/products/pi/pdfs/tpamax.pdf
Adverse reactions are on the second page, way too many to list here. Strangley enough they include migraines!
Good luck
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Marc
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Re: topamax
« Reply #8 on: Oct 27th, 2002, 8:31pm » |
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Mark C,
Sorry to barge into Bart's Topamax thread, but any reason you have not given Verapamil a try? While it doesn't work for everyone, I'd consider it a "first line of defense". I'm sure you've already read about the high dosages often required, and the very low incidence of side effects. Just curious......
Bart, welcome aboard!
Marc
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justin
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Re: topamax
« Reply #9 on: Oct 28th, 2002, 10:34am » |
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i too was on a crazy concoction of depakote and topamax. although combined with diltiazem which is similar to verapamil. i had been on verapamil in the past and decided it was better than what i was doing so i wanted to go back. the neuro agreed and said i should be taking both depakote and topmax especially since there were no results showing. he prefers depakote because the side effects or less severe. topamax can cause memory loss apparently. so i'm am on 480mg verapamil daily 240am 240 pm and 1000 depakote nightly. extended release so i only have to take once a day. IT HAS STOPPED MY CHRONIC CH COMPLETELY. i forgot a dose of verapamil one day and got an attack 17 hours later. doc said it meant the meds were working. so just sharing. if you have questions, bart, email me. or anyone for that matter.
jd
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if any clusterheads in NYC want to get together shoot me an email justinott@mac.com
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Mark C
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Re: topamax
« Reply #10 on: Oct 29th, 2002, 5:05am » |
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Marc,
I am going back to the Neuro this month and it is on the short list along with o2, both of which I have never tried.
There is only a couple of meds left on the list I can find I have not tried. I am at a loss as to why the Docs have not offered it yet. God knows they have given me damn near everything else. I only learned about it here this month. No preventive med has worked for me yet so I am skeptical after 20+ years of failures, but I am still trying!
Mark
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Sweet_Landings
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Re: topamax
« Reply #11 on: Oct 29th, 2002, 8:14am » |
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Bart,
I too have recently started taking Topomax, but only Topomax. After three weeks, I have no more pain, but I have pins and needles in my hands and feet, a lot of nausea, memory problems, and a lot of nausea. I am also losing weight quite rapidly, but this is a bonus as far as I am concerend at this point  . Although the side effects are extreme, the break from pain is well worth it. If I don't adjust within a few months and see a decrease in the severity of the side effects, I may have to seek another alternative. But for now, I am willing to deal with the nasty side effects.
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Sweet_Landings
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NotH20
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Re: topamax
« Reply #12 on: Oct 30th, 2002, 12:54pm » |
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Welcome Bart.......
I was on Topomax for several months. It was extremely scary - had all the symptoms that everyone else has been listing. But I stayed with it and I believe it helped end my last cycle (back in January). Bart if you're interested in more detail, send me an email and I can give you a list of the meds I was on a the time of my temporary success.
My doc had to get me off of it though since I was becoming "toxic" - I guess I had reached my limit - even my nose was totally numb! ???
Hey Sweet - as for the wieight loss - I too enjoyed that! But let me warn you now that when you do come off the meds, the weight will rapidly come back AND THEN SOME TOO!!!!! 
Good luck to all.....
NotH20
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hdbngr
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Re: topamax
« Reply #13 on: Oct 30th, 2002, 2:22pm » |
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Hi Bart:
I'm taking the topomax. 200 mg twice a day. I found out about it on this site and asked my doc for it last year. Further research on the Net said if you can stick out the side effects, it will start to help within a month or so, but like all the preventative meds, some people not tolerate it well. Neurontin was one that made me feel awful.
I have noticed some memory loss, but I do think it has decreased the severity of the daily episodes, although nothing helps a really bad cycle except time and movement.
Have lost a good bit of weight, not sure if that is the topomax, or the fact that it makes carbonated drinks taste like alka seltzer and I no longer want to drink them! Maybe both? NOt as hungry, pins and needles in my feet and hands. I'm going to stay on it, no point in removing something that might be helping. After all the prednisone bursts, a little weight loss was welcome anyway. Good luck, and welcome!
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Mark C
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Re: topamax
« Reply #14 on: Nov 1st, 2002, 12:10am » |
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Stopped taking the Topamax about 10 days ago. Most of the side effects are gone except one, my sense of taste is still shot.
Anyone have experience with this? How long before I can drink something with fizz and it not taste like s*it?
Thanks,
Mark
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Sweet_Landings
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Re: topamax
« Reply #15 on: Nov 1st, 2002, 10:46am » |
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Mark C,
I started taking the Topomax 10-10-02. The carbonated drink thing is not a side effect that I have. I have stopped drinking sodas, mainly because anything with sugar makes me ill within just a few minutes and I am praying to the procelain god. The nausea is the real kicker for me. Meat, sweets, fatty foods all make me very ill very quickly.
I didn't see that side effect metioned in any of the archives or in any of the other stuff I have read about Topomax. It could be a result of a combination of medications you are taking rather than just the Topomax too. From what I read in all the archives and all the literature I could find on Topomax, all the side effects should taper off over time other than loss of appetite.
Hope that helps some.
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Sweet_Landings
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