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» LymeNet Flash » Questions and Discussion » Medical Questions » Topamax

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Author Topic: Topamax
katiegirl625
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Hello everyone
Has anyone been put on Topamax for Lyme pain?

Posts: 52 | From Owings Mills MD | Registered: Aug 2008  |  IP: Logged | Report this post to a Moderator
Pauline
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Yes, I was on Topamax for nerve pain in my head and headaches related to Lyme. I went up to 75 mg's. It seemed to help each time I raised my dose for a while, then quit working. Now I am just on antibiotics trying to treat the underlying problem and a low dose of Nortriptyline which is too soon to tell if it's working. The Topamax gave me severe mood swings during PMS until I adjusted to the doses. Had to take Klonopin to help with that.
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candlequeen
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Yes I took 25mg for Lyme headaches. It worked great. Not having to use it anymore though.
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Dawnee
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Yep... it helped bring out my Lyme symptoms..that stuff was NOT good for me.

But.. everyone reacts differently.

The first month I had an episode where my eyeball started jerking by itself (that was freaky)
The second month is when most of the other issues came up (and when I had a tooth extraction gone wrong,and then another tragic experience.. which also helped bring out the Lyme symptoms)

I had severe whole body tingling, sometimes when I would talk my hands felt very very huge like big balloons but they were just fine (at the same time I would feel like I had been hyperventilating even though my breathing was normal..Id get that lightheaded feeling)
I also lost the ability to sweat normally (bad when you are trying to detox) and got a severe case of hand tremor once..not sure if that was from the actual Topamax or if it was because Id lost the ability to sweat (I'd been out in the heat doing yard work)
I suddenly started getting body wide muscle twitches... they have not gone away since stopping it 7 months ago (but then, its probably just the Lyme and the Topamax just helped it show up or something)

I quit after the second month.
If you decide to take it, be sure to ramp up very slowly. I ramped up slowly.. but my body sure didn't like the stuff.

Not trying to scare you.. just letting you know my own experience.

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