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CJohnson
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Topamax - stopping cold turkey
« on: Jan 20th, 2004, 9:41am » |
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Anybody just stop taking topamax without tapering? They say you should taper down, but, whatever. I take 75 mg before bed, but haven't taken any for the last 2 nights.
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-Curtis
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| « Last Edit: Jan 20th, 2004, 9:42am by CJohnson » |
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Prense
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Re: Topamax - stopping cold turkey
« Reply #1 on: Jan 20th, 2004, 10:24am » |
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I came off topamax very quickly... I tapered from 300 to 100 then from there, stopped. I had no ill effects from stopping at 100...
Horrible experience though on that stuff all together though.
Since you mentioned it...
Anyone know why there is such a large disparity in the tapering up dosage for this med? It is commonly known that not tapering up slowly will make the PT more apt to get the nasty side effects. I was prescribed it by a neuro and my dosage schedule looked like this...
50mg/day x 5 days, 100 mg/day x 3 days, 300 mg/day...that's when the shit hit the fan and I had to come down. Of course, at the time, I knew jack about this med and the appropriate way to take it. I assumed the neuro knew what the hell he was doing.
Now, here is a med that might actually work for me, but I will never know because I damn sure am not going to go down that road again.
I do not visit that neuro anymore. Not trying to hijack your thread Curtis...
Chris
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CJohnson
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Re: Topamax - stopping cold turkey
« Reply #2 on: Jan 20th, 2004, 10:46am » |
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Not at all, Chris. Those are some heavy doses compared to what my neurologist prescribed. My regimen was like this:
1st 2 weeks: 1 pill before bed - 25mg (I think - I never bothered to check)
2nd 2 weeks: 2 before bed - 50mg
3rd 2 weeks: 3 before bed 75mg - this is where I'm at now.
I started with prednisone for the first 5 days, verapamil in the am and topamax and amerge in the pm. Stopped the verapamil and amerge after about 2 weeks, and have been taking only the bedtime topamax. Easiest cycle ever, by far. Literally went from 4 headaches per night to none the first day. The very few headaches that broke through were easily dispatched with exercise.
Stopped taking topamax a couple nights ago and have felt no ill effects.
Here is a site in which a headache specialist who is working on trials with topamax which gives a suggested tapering schedule of topamax for clusters:
Week 1: 15 mg - -25 mg at bedtime
Week 2: 25 mg, twice a day
Week 3: 25 mg day dose, 50 mg bedtime dose
Week 4: 50 mg, twice a day
Weeks 5 - 7: maintain 50 mg, twice a day. If that isn't working progress through weeks 8 - 11 if necessary
Week 8: 50 mg day dose, 75 mg bedtime dose
Week 9: 75 mg, twice a day
Week 10: 75 mg day dose, 100 mg bedtime dose
Week 11: 100 mg twice a day
Weeks 12 - 18. Maintain 100 mg twice a day.
If 100 mg twice a day doesn't give the desired results, he recommends tapering down and off Topamax rather than going to a higher dosage because the clinical trials are showing that there is no benefit to going higher.
http://headaches.about.com/cs/prevention/a/topamax_dos.htm
PFDANs
-Curtis
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Prense
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Re: Topamax - stopping cold turkey
« Reply #3 on: Jan 20th, 2004, 11:43am » |
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That's pretty much what I have heard for a correct progression. Thanks for the link! I am glad to hear that you came off due to not needing it instead of not being able to take it...
Chris
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henzey
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Re: Topamax - stopping cold turkey
« Reply #4 on: Jan 20th, 2004, 9:34pm » |
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I think that you are supposed to taper off or it might trigger some type of seizure in some people, but clearly not all. I also had some really bad experiences with Topamax, even in low doses, and likely will not use it again.
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toader
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Re: Topamax - stopping cold turkey
« Reply #5 on: Jan 20th, 2004, 11:36pm » |
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just stay away from strobe lights and "laser" shows, man 
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CJohnson
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Re: Topamax - stopping cold turkey
« Reply #6 on: Jan 21st, 2004, 8:20am » |
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on Jan 20th, 2004, 11:36pm, toader wrote:| just stay away from strobe lights and "laser" shows, man |
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Damn, there goes my trip to the planetarium. LOL
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-Curtis
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Lizzie2
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Re: Topamax - stopping cold turkey
« Reply #7 on: Jan 21st, 2004, 2:00pm » |
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I'm going to stop my topamax cold at 100mg at bedtime. I'll have to let you know if I get any ill effects. I know you're supposed to taper down and yada yada yada, but I went to the neuro today and had another EXTREMELY frustrating appointment (going to be going new neuro shopping), and I'm saying screw the topamax. Been on it 2 years...it has seriously messed up my brain, and I can't take it anymore. So I'm dumping it on my own. I have no step down 25 mg pills so here we go! This could be a fun adventure!
~Lizzie 
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Prense
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Re: Topamax - stopping cold turkey
« Reply #8 on: Jan 21st, 2004, 5:58pm » |
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Lizzie,
You can try to break the 100s in half for 5 days, then stop after 5 days @ 50mg (roughly)...if you are concerned about potential siezures...
Chris
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Lizzie2
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Re: Topamax - stopping cold turkey
« Reply #9 on: Jan 21st, 2004, 9:38pm » |
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Hi Chris,
I'm just curious, but is the concern over getting seizures when stopping topamax an indication for those who are actually taking it for epilepsy or seizure control? Or is there actually a risk of developing seizures when stopping it if you are taking it for other uses such as CH or other headache types? I know a lot of the neuroleptics have indications of risk of seizure upon stopping but that's because they are prescribed to stop seizures in the first place. However, I really don't know enough about the risk of topamax causing seizures if you are taking it for other reasons. Just curious! Thanks!
~Lizzie
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Prense
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Re: Topamax - stopping cold turkey
« Reply #10 on: Jan 21st, 2004, 11:10pm » |
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Good question Lizzie...
When I came off of topamax, my PCM (because I fired the neuro that put me on it) contacted a neuro that she knew on how to get me off of it. He told her that, to avoid possible seizures, I needed to taper down. He gave her the schedule which was; (from 300mg) 200mg/day x 3 days, 100mg/day X3 days, 50mg/day x 3 days, 25mg/day x 3 days.
Of course, I had no ill effects with this schedule. My symptoms (side effects) improved drastically before I got to the 50mg. It took almost 4 months to lose all the side effects except for my short term memory. I still suffer with short term memory loss (alot of it) that I did not have a problem with prior to topamax. I can make a conscious effort to remember something and successfully remember it, but I cannot tell you what I had for dinner last night. Things like that. It has been over 6 months since this happened.
Anyway, I cannot answer your question accurately...just relating my experience.
Chris
P.S. She did tell the neuro I was taking it for CH. The neuro specializes in MS... You decide! 
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| « Last Edit: Jan 21st, 2004, 11:11pm by Prense » |
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CJohnson
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Re: Topamax - stopping cold turkey
« Reply #11 on: Jan 22nd, 2004, 1:31pm » |
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Got hit last night about 1 - 1.5 hours after falling asleep. Very mild, just enough to wake me up. Went downstairs and did some squats and was PF in about 5 minutes. Have decided to taper down. I see my neurologist on Feb 5th, so I'll take 2 a night until I see him and go from there.
Wondering if there is any connection between family history of epilepsy and effectiveness of topamax.
In my case - family history of epilepsy - yes. Effectiveness of topamax - very effective.
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-Curtis
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Charlie
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Re: Topamax - stopping cold turkey
« Reply #12 on: Jan 22nd, 2004, 8:49pm » |
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I took Topamax for seizures. Doc had me taper up and taper down. I was taking other anti-seizure stuff as well so no seizure. It drove me nuts and I couldn't take the stuff. Too bad as it was the best drug I ever had for my epilepsy. 
Charlie
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