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Topic: Topamax (Read 546 times) |
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tpitts77
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Has anyone ever had any relief or prevention from Topamax?
I started it yesterday. I've been on 720mg Verapamil and 150mg Indocin for 3 years now and about 6 months ago the combination started not to be as effective. I'm still taking the Verapamil, hopefully the Topamax will help.
Thanks
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NotH20
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Re: Topamax
« Reply #1 on: Sep 2nd, 2005, 10:56am » |
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It's been several years since I've used this medicine. I used it along with DHE injections as abortives and it worked. Be careful, it's easy to become toxic. Stay in close contact with your doc as the dosage is increased. Good luck to you.....
Mia
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E-Double
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Re: Topamax
« Reply #2 on: Sep 2nd, 2005, 11:50am » |
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Unfortunatly, Topamax was a nightmare for me.
I literally felt like I lost my mind.
I could not see any of my clients.
When I did I could not conduct any of the procedures that I devloped and knew like the back of my hand.
I went from being absent minded to literally not knowing wehre I was.
Then it took a relatively long time to taper off.
Sorry to be a bummer but there is a reason why people call it Dopeymax!
Good luck!
BTW were you on indocin for 3 yrs straight?
I hope you had your kidneys and liver checked!
Best,
Eric
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| « Last Edit: Sep 2nd, 2005, 11:50am by E-Double » |
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sandie99
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Re: Topamax
« Reply #3 on: Sep 2nd, 2005, 12:17pm » |
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I agree with Eric. Topeymax was dopeymax to me... it was total nightmare! Didn't work with me at all! I got MORE attacks and they were more painful. And when I started the treatment, I got a mild ch pain 24/7 for 5 days.
I hope you have better luck with it.
Best wishes & PFdays,
Sanna 
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marlinsfan
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Re: Topamax
« Reply #4 on: Sep 2nd, 2005, 1:28pm » |
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Didn't make me dopey, but like Sanna, my headaches got worse. I didn't taper off it, though, I just stopped one day.
Better luck to you!
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unsolved1
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2 Words:
KIDNEY STONES
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Sean_C
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Did you mean Dopomax 
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LeLimey
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Re: Topamax
« Reply #7 on: Sep 4th, 2005, 4:24am » |
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I'm on it at the moment. Whilst I can't say I reall feel its affecting me continuously there are most certainly times where I feel I'm not in the same time zone as others around me and I don't like it. I'm having some very bizarre dreams which are downright painful.. whether this is me getting hit and not waking up I don't know, I'm so confused by all of it I just really don't know which way is up at the moment. Right now whilst I'm typing this the urge to just stop and burst into huge wracking sobs is damn near overwhelming me.. and I'm not like that. I don't know if that is another side effect of the med or if its merely the fact that its all starting to get to me.
As I tapered off the verapamil I was getting hit 1-0-12 times a day and now, on 200mg of topiramate (the name we use here) I'm geting hit anywhere between 2 and 8 times a day. There is no pattern to it and no second guessing. I'm having alot more shadows than I've ever had and I'm really struggling.
I'm ready to admit defeat and switch to something else.
Having said all of this, as you well know we are all different and one ch'ers wonder drug is another's poison! You're able to take it in conjunction with the verap which I was not so hopefully the combo will work well for you. I'd recommend keeping a diary.
Good luck! Let us know how you get on okay?
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Gator
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Re: Topamax
« Reply #8 on: Sep 5th, 2005, 2:19pm » |
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I had bad experiences with Topomax. I had terrible nightmares, the headaches were worse and I was dumber than a bag of hammers while on it. I was unsafe to drive - the wife confiscated my car keys. All in all, it was like a temporary chemical labotomy.
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Salvelinus
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Re: Topamax
« Reply #9 on: Sep 5th, 2005, 8:10pm » |
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I started it a couple years ago, but learned about the kidney stone side effect. I've passed multiple stones, so I stopped taking the topamax.
Not sure why, though, because the stones didn't hurt nearly as much as my headaches. Freaked the ER nurse out with that bit of info . . . she asked me to rate my pain and then said "it's probably a 10, right?" I said "no, it's an 8." 
Anyway, from the responses above, it sounds like I didn't miss out on much. Good luck, tpitts. I hope you fare better . . . I'll pray for you.
Namaste,
--Scott
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Namaste,
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lindysmom
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Re: Topamax
« Reply #10 on: Sep 14th, 2005, 4:39pm » |
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Just came home from the doc myself...after an ER visit 2 nights ago and was given some dopeymax..ahem...topamax to try to break cycle...episodic. Ever heard of it used that way. Needless to say I took #1 just a few minutes ago and am starting to get freaked. I know that alll meds act differently for everyone but there sure seems to be a coomon thread on this one. Maybe, just maybe, doc is right this time and it'll break cycle (but that's been on and off since Jan) and I'll only need it a month or two. 
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Cynde
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Re: Topamax
« Reply #11 on: Sep 24th, 2005, 11:14am » |
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I've been on Topamax now for almost three months, and it has been amazing. Yes, the dumbness in the beginning, especially when I was on the higher dose (100 mg/day), as well as the severe lead-like feeling in my arms and legs (it's not tingling -- it's much worse), were hard to take. I stuck with the higher levels for about six weeks before I couldn't stand them, then started tapering down. I'm down to 25 mg/day, taken only at night, and although I've had some shadows and some vague threats of a CH, I haven't had a full-blown CH since I started taking it. I don't know when I'll feel confident enough to stop taking it altogether, but it has been a lifesaver. So although some people have had poor responses or no response, it's been great for me. You've gotta try every weapon in the arsenal until you find what works for you, I think!
Good luck!
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LeLimey
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Re: Topamax
« Reply #12 on: Sep 24th, 2005, 1:01pm » |
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Cynde good for you!
I'm really really pleased you have found something that works for you and I couldn't agree more about the fact that what works for one doesn't necessarily work for another. To my mind thats the most insidious part of this condition.
I'm truly happy for you and I hope it lasts! As to when to stop, Id wait a couple of weeks after ALL activity in your noggin has stopped before considering that. you might want to try cutting the pills in half then to see how it goes.
Good luck and keep us up to date with how you are doing okay?!
Regards
Helen X
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Cinder
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Re: Topamax
« Reply #13 on: Sep 26th, 2005, 1:06pm » |
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I was on Topamax for two years. Than my Dr. took me off cause it didn't seem to help with the CH. While on the Topamax, I surly thought that I was loosin it.
Couldn't remember anything.
And when he slowly took me off I thought I was gonna die, the withdrawls were awful. Lasted 3 days.
But now that I am off It is nice to remember were I am.
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bnfreeman
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Re: Topamax
« Reply #14 on: Sep 26th, 2005, 7:05pm » |
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I was on it for about 6 months. It helped for a while and then one day they came back. And like many of the others, I forgot who I was while on it.
B
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kayarr
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Re: Topamax
« Reply #15 on: Oct 2nd, 2005, 12:48am » |
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We went to a new Nuero on Friday and since Verapamil is no longer an option she decided to put him on Topamax. When we asked about the side effects she mentioned the liver and the blood levels and the kidney stones but did not mention the spaciness. (or the addictive side..) Is there anything else we should know about this stuff before we try.
Ps ( Dr. answered her cell phone while she was talking to us and it was her Mom looking for the screw driver>>>*sigh*)
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diamondj
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Re: Topamax
« Reply #16 on: Oct 6th, 2005, 8:22pm » |
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Topamax made me really stupid, but I lost about 15 pounds in six months or so. It cut down the number of CHs a little, but was too expensive to justify. Melatonin has worked just as well for me.
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