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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Getting off Topamax

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Getting off Topamax (Read 915 times)

linda

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Getting off Topamax
Jan 8^th, 2010 at 12:14pm

This is my first time posting on here. I have been on Topamax 100mg for a year now. I went to see my MD yesterday because I have been so weak and tired. I have lost 48 pds since being on the drug and in the past few months can only eat about 400 cal a day. I have asked my head dr to take me off several times but he doesn't want to. So my MD is. I am a bit scared due to the withdrawl symptoms I have read online and that they are going to come back 10 folds. I still get 5 to 10 a month even on the meds. I feel so lost and alone with these headaches. Noone at home understands how bad they hurt. The med did make it so they didn't come on as strong and along with the Maxamelt I was doing okay, besides not being me. I guess I just need someone to tell me I'm going to be okay off the meds, that I'm not going to go off the deep end, or start having seizures because I stopped. I'm sorry, I really needed to vent my fears.

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Karla

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Re: Getting off Topamax
Reply #1 - Jan 8^th, 2010 at 12:52pm

I have been on and off topamax several times at dosages up to 600mg for ch. I never had any seizures or problems with withdrawl. Because you are on such a low dose they just may want to take you off at once and be done with it or may tapper either should be fine. I have not heard of anyone reporting bad effects going off here on the boards. I will pray for you to have a safe detox. There are lots of other meds out there for you to take as a preventative. Verapamil, lithium, elavil, zyprexa, and dont forget the oxygen use can really give you freedom and your life back if used correctly.

Karla&&suffer chronic ch &&ch.com groupie since 1999&&Proud Mom of Chris USMC Semper Fi

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BarbaraD

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Re: Getting off Topamax
Reply #2 - Jan 8^th, 2010 at 4:29pm

I've been on topamax for about 10 years and went off it a few years ago with no side effects except that my headaches came back 10 fold and I went right back on it big time.

When I'm in a low cycle I drop the dose to 50 mg and if they start hitting more often I up it to 100mg or more depending on the intensity and how often.

But I've not had any seizures or bad effects with this and I"ve been up really high doses at times.

If you want to get off it completely cut the pills in half for a week or so and then just quit taking them. That way they'll taper out of your system.

But caution -- have a backup. I thought I didn't need anything when I got off it and now my neuro has permission (in writing) to use a baseball bat on me if I ever think that again.

If the weight loss is the only thing that's bothering you, you might try drinking some ensure or something like that. I lost weight, but I needed to (still do) so I never minded that side effect. I also take it at night before bedtime (not how they say to do, but it's worked for me for 10 years).

Let us know how things work out for you.

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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jlovins

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Re: Getting off Topamax
Reply #3 - Jan 17^th, 2010 at 10:32pm

Hi! I was wondering if anyone had in changes in their CH while being on Topamax? Prior to Topamax, my CH was on my right side only. Since being on Topamax, my "cluster zone" has shadow pain, but I'm having extreme migraines that lasts for days. It's like the CH is spread out over my head, and not focused in my temple. No nausea..., but all the other classic CH symptons.
I'm on 150 mg of Topamax daily, at night, for about 4 months. Also on 75 mg of Indocin for that past 6 weeks (that just got increased to 150mg).
I'm partially wondering if the Topamax is causing the "extreme migraines"...side effect?...over medicated? or I don't know what?
Thanks!

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Getting off Topamax Reply #4 - Jan 18^th, 2010 at 6:36am I have "occasional" migraines but I don't think it's caused by topamax. I have the naseau with it (I don't do things half way ). Don't know what to tell you about this. I've just never had the side effects from topamax. It's been my miracle drug.
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