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Feeling a bit like Alice in Wonderland on Topamax!

Thu, 04/03/2008 - 23:28
Topic: Medication Issues
Hi there, I have been taking Topamax now for around 8 months. Every few days I experience severe burning throughout my head, and sometimes the room even seems to move in waves, and I know this probably sounds completely nuts!...but objects & people seem to shrink in size..as though from 'Alice in Wonderland' at first it was a little funny, but now it is frightening. I have told my neurologist of my concerns, and he has told me to hang in there. I have started taking different vitamins and changing my diet etc, and this has helped a lot, but unfortunately these symptoms come back. Has anyone else experienced these symptoms on Topamax?? Cheers! Summer :)

Comments

Re: Feeling a bit like Alice in Wonderland on Topamax!

Submitted by gypsyg on Sat, 2008-04-19 - 11:51

 I'M NOT SURE IF THIS IS TRULY RELATELY OR NOT BUT I HAVE THESE SYMPTOMS OF HEADACHES, VISION

PROBLEMS AND TIMES WHERE I JUST FEEL LIKE THERE WORLD AROUND ME JUST ISN'T RIGHT, WHERE THE

TRUTH OF THE MATTER IS I'M JUST NOT RIGHT.  BE IT THE AMOUNT OF MEDS I'M TAKEN AND OFCOURSE,

TOPAMAX IS ONE OF THE OTHER 8 MEDS I HAVE TO TAKE TWICE A  DAY.  THAT'S NOT INCLUDING THE

OTHER MEDS END UP TAKEN DURING THE WEEK FOR MY HEADACHE, MIGRANE, SPELL WHAT EVER YOU WANT TO

CALL IT.  BUT, I READ YA'LL STUFF AND I UNDERSTAD.

I WISH YA'LL THE BEST AND GOOD LUCK OUT THERE IN THE BIG WORLD.

 I'M NOT SURE IF THIS IS TRULY RELATELY OR NOT BUT I HAVE THESE SYMPTOMS OF HEADACHES, VISION

PROBLEMS AND TIMES WHERE I JUST FEEL LIKE THERE WORLD AROUND ME JUST ISN'T RIGHT, WHERE THE

TRUTH OF THE MATTER IS I'M JUST NOT RIGHT.  BE IT THE AMOUNT OF MEDS I'M TAKEN AND OFCOURSE,

TOPAMAX IS ONE OF THE OTHER 8 MEDS I HAVE TO TAKE TWICE A  DAY.  THAT'S NOT INCLUDING THE

OTHER MEDS END UP TAKEN DURING THE WEEK FOR MY HEADACHE, MIGRANE, SPELL WHAT EVER YOU WANT TO

CALL IT.  BUT, I READ YA'LL STUFF AND I UNDERSTAD.

I WISH YA'LL THE BEST AND GOOD LUCK OUT THERE IN THE BIG WORLD.

Re: Feeling a bit like Alice in Wonderland on Topamax!

Submitted by filigree on Thu, 2008-07-31 - 23:56

I've been on and off Topamax since 2000, and I've had a pretty good experience with it. (I originally took a low dose for migraines, but when I started having seizures after a nasty head injury, the neuro just upped my dose. It seems to be working out.) My seizures are what give me the Alice in Wonderland experience! I have complex partials with auditory and visual hallucinations. I originally described them to the doctor as just that- "Alice in Wonderland". Everything shrinks or gets big and wonky, then it's all far away, then the hallucinations take hold for a minute. It's all very deja-vu, but not.

 Anyway, I had all the normal side effects of topamax, listed above, every time I went up on dosage. Tingling, fumbling for words, mood swings, lost weight like some angry gypsy had put a curse on me, etc. But for a while after I first went up to 200mg, it caused me to have the weirdest thing: while lying in bed trying to fall asleep, I would get the sensation that my mouth was VERY huge, and the rest of my body was very tiny.

 It lasted a couple of months, and went away like everything else -even my weight leveled off, thank goodness (I lost my hips there for a little while and looked like a little boy.)

Has anyone else experienced the huge mouth/tiny body sensation? Or any other similar weird body perceptions/sensations?

I've been on and off Topamax since 2000, and I've had a pretty good experience with it. (I originally took a low dose for migraines, but when I started having seizures after a nasty head injury, the neuro just upped my dose. It seems to be working out.) My seizures are what give me the Alice in Wonderland experience! I have complex partials with auditory and visual hallucinations. I originally described them to the doctor as just that- "Alice in Wonderland". Everything shrinks or gets big and wonky, then it's all far away, then the hallucinations take hold for a minute. It's all very deja-vu, but not.

 Anyway, I had all the normal side effects of topamax, listed above, every time I went up on dosage. Tingling, fumbling for words, mood swings, lost weight like some angry gypsy had put a curse on me, etc. But for a while after I first went up to 200mg, it caused me to have the weirdest thing: while lying in bed trying to fall asleep, I would get the sensation that my mouth was VERY huge, and the rest of my body was very tiny.

 It lasted a couple of months, and went away like everything else -even my weight leveled off, thank goodness (I lost my hips there for a little while and looked like a little boy.)

Has anyone else experienced the huge mouth/tiny body sensation? Or any other similar weird body perceptions/sensations?

Re: Feeling a bit like Alice in Wonderland on Topamax!

Submitted by jenstau on Wed, 2010-11-03 - 22:13
I realize that you posted this two years ago so you may not even get this, but I'm curious to know if the "tiny body and big mouth" sensation ever went away? I have been on topamax for a little over a week now and have the exact same experience! Only it goes back and forth between my body feeling very big to very tiny to my head feeling big and my body tiny....VERY freaky feeling. It really freaked me out the first night it happened but I tried to forget about it because I figured it was from the medicine especially because I was very dizzy from it in the beginning too (still dizzy as well). I hope this goes away! Please let me know what your experience with this med was because reading the package insert is way different than getting input from someone who has actually taken the drug! Thanks!

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