Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Feeling a bit like Alice in Wonderland on Topamax!
Thu, 04/03/2008 - 23:28Comments
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 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.