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Topic: I want to get off Topamax (Read 521 times) |
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Sophie
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I want to get off Topamax
« on: Oct 14th, 2004, 3:55pm » |
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I have been taking 100 mg Topamax for 7 weeks and have no clusters---but the side effects are driving me crazy---Today I have just had it----what would the risks be if I just quit? Dr. wants me to stay on for 3 months.
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Cluster Buster
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thomas
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Re: I want to get off Topamax
« Reply #1 on: Oct 14th, 2004, 3:58pm » |
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I am not sure, but I think you have to wean off it slowly. Ask your doctor.
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broomhilda
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Re: I want to get off Topamax
« Reply #2 on: Oct 14th, 2004, 5:09pm » |
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Sophie, please be careful, consult with your doctor, my experience was to wean off very slowly... took me two months...
Wishing you the best, glad to hear you are pf!
Andrea
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Suck it up Princess...
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Lizzie2
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Re: I want to get off Topamax
« Reply #3 on: Oct 14th, 2004, 7:16pm » |
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Here's an article regarding tapering off of Topamax. Remember one thing....abruptly stopping topamax (and a few other meds) can CAUSE seizures...even in people who have never had them before! I would always advise contacting your doctor and asking for their help and guidance in getting off of it!
http://headaches.about.com/cs/prevention/a/topamax_dos.htm
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Sophie
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Re: I want to get off Topamax
« Reply #4 on: Oct 14th, 2004, 8:51pm » |
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Hope I'm doing this right---I appreciate the feedback from you all. I really knew better. I know I need to get ahold of the Dr. and have him help me get off this stuff.
Just having a crummy day--- and fed up---should feel lucky about no cluster, but have had a constant dull boring headache for a month and lots of stomache problems etc etc----I will follow your advice and contact Dr. tomarrow----what's a few more hundred dollars----better than a hospital visit with no insurance. Thanks, for letting me vent-----and hope for a miricle for us all.
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Lobster
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Re: I want to get off Topamax
« Reply #5 on: Oct 15th, 2004, 2:22pm » |
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I tapered off it over the course of a week. Did 100 75 75 50 50 25 25 0.
Taper off. If you shadow or CH then crank it back up.
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Sophie
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Re: I want to get off Topamax
« Reply #6 on: Oct 16th, 2004, 1:09am » |
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Rock_Lobster
My Dr. said to cut the 100 mg in half and take 50 mg at bedtime for two weeks and quit. I was rather surprized, didn't think you should cut time released pills up---but it sounded okay to me---however your taper is faster yet.
I pretty much expect to get the CH back-----and don't plan on going back to Topamax. Brave talk---till it happens. Did you stay off of it? Sophie
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Apple
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Re: I want to get off Topamax
« Reply #7 on: Oct 18th, 2004, 7:46pm » |
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I've been on Topamax for a couple of years now. My ADD like symptoms seem to be getting worse. The doc put me on Aricept from the onset because I was like a complete space cadet at the beginning. This seem to help. But, the fog seems to be worsening lately and my self esteem is the pits. If I get the least bit nervous, well the fog is like pea soup and I sound like a complete air head. I make no sense at all. I have no memory and can't remember anything anyone tells me. I also seem to have days that I'm bone tired. Some days are better than others. In addition to all of this, I have this constant low level depression. I find this drug VERY weird. I only put up with it because it reduced my migraines by half. Some days I want to throw it out the window. The doc says he will consider replacing it with Keppra, but doesn't seem overly optimistic. What have others replaced their Topamax with here? How can you tolerate the pain when you go off Topamax? I don't want to go back with my tail between my legs. This sounds like getting stuck between a rock and a hard place.
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I don't have CH, I have horrible migraines. Doc says they have "cluster features." Can I still stay? Migraines suck. Can I say that?
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Connie
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Re: I want to get off Topamax
« Reply #8 on: Oct 18th, 2004, 7:55pm » |
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My hubby (James) is taking 100 mg Topamax a day (50mg in the morning & 50mg at night) for about 4 weeks now but so far has only had tingling in the hands and feet on occassion.
Do the side effects creep up on you after taking it awhile or would he have had them by now?
He is also drinking about a gallon of water a day so he does not get kidney stones.
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Connie
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Sophie
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Re: I want to get off Topamax
« Reply #9 on: Oct 30th, 2004, 1:40am » |
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I tapered off the topamax and so far so good. No CH.
However, I feel like one is trying to break on thru. I guess I don't really understand "shadows"----and how do you tell a shadow from a sinus ha?? I have constant dull headache and pains on the CH side----using Tylenol, but wondering if melitonan would help? And would this be a good time to start thinking about shrooms in order to be ready for the next cycle---have had them hit in the winter. Once again I feel lucky for no CH----but whining about constant HA----you know it's all about me. Should I be posting these questions somewhere else?
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Apple
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Re: I want to get off Topamax
« Reply #10 on: Nov 4th, 2004, 8:13pm » |
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Sophie....How are you doing? Have you considered Zonegran? My doc says there is very little difference between the two meds, but some people feel Zonegran is better in the S/E department. I've heard some okay things about Keppra. Of course, there is always Verapamil and other preventatives. Did you see the post about Melatonin? Hang in there.
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I don't have CH, I have horrible migraines. Doc says they have "cluster features." Can I still stay? Migraines suck. Can I say that?
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Sophie
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Re: I want to get off Topamax
« Reply #11 on: Nov 4th, 2004, 8:45pm » |
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I've been off the Topamax for 1 week now. Had really strange --dull constant headache in the area where the CH was ---guess that is a shadow??? Got some melatonin and it is helping but I have a rash on my face-----wondering if the melatonin was the cause. So I'm going to give that a rest and see if the rash clears up.
And make plans for the next attack---I will make a note of what you suggested----however I'm pretty sick of doctors-----a break in Florida sounds good. Hope you are doing well, and thanks for your concern. Isn't it good to have a place to go---where people understand?
Not alone anymore!
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Renee
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Re: I want to get off Topamax
« Reply #12 on: Nov 7th, 2004, 11:20am » |
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ditto on the Zonegran. It is similar to Topomax with typically fewer side effects and different side effects.
I couldn't handle topomax for even 2 weeks. Have had virtually no BAD s/e from the Zonegran other than the first 2 weeks I was a bit drowsy.
Hang in there!!!
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Redd
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Re: I want to get off Topamax
« Reply #13 on: Nov 7th, 2004, 11:27am » |
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However do NOT take Zonegran if you are allergic to sulfa medications....I am and so the Zonegran is a BIG no no for me. It could Kill you...please be aware...
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Renee
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Re: I want to get off Topamax
« Reply #14 on: Nov 7th, 2004, 11:11pm » |
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hey Redd,
that's the first i've heard about the sulfa allergy and Zonegran. 
i'm allergic to sulfa drugs!!! 
glad i'm still kickin' but i've not had any problems, no thanks to the docs.
thanks for letting me know, 
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Redd
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Re: I want to get off Topamax
« Reply #15 on: Nov 8th, 2004, 7:23am » |
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My specialist had mentioned it along with re-trying topomax since they are of the same class. But once she saw in my chart that I'm highly allergic to sulfa drugs she said "oops we can't do that now can we". Maybe it depends on what sort of reaction you have to sulfa. If it's a mild one it may not be serious enough to prevent you from takeing it.
YMMV
You can google it for yourself.
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| « Last Edit: Nov 8th, 2004, 7:26am by Redd » |
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