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Feeling a bit like Alice in Wonderland on Topamax!

Thu, 04/03/2008 - 23:28
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 Steve Bowes on Fri, 2008-04-04 - 19:54

You are certainly not the first or last to have a Wonderland experience on Topamax. I was among the early ones on Topamax after FDA approval and my Wonderland lasted years. By the end, my speach was impaired and my ability to think rationally was severely undermined. By the end, I went in to shave one day and had a tough time holding myself together when the face in the mirror looked like a character in a cheezy horror flick. Later that day I was arrested on the campus of my university in mid-day, and hauled to the drunk tank because the security guard at the student pub thought I was hammered when I was just having lunch.

  Unless you have exhausted the alternatives for meds, tell your neurologist that you are not prepared to surrender to Topamax yet. My memory was also severly impaired, by the way.

   Best of luck!

You are certainly not the first or last to have a Wonderland experience on Topamax. I was among the early ones on Topamax after FDA approval and my Wonderland lasted years. By the end, my speach was impaired and my ability to think rationally was severely undermined. By the end, I went in to shave one day and had a tough time holding myself together when the face in the mirror looked like a character in a cheezy horror flick. Later that day I was arrested on the campus of my university in mid-day, and hauled to the drunk tank because the security guard at the student pub thought I was hammered when I was just having lunch.

  Unless you have exhausted the alternatives for meds, tell your neurologist that you are not prepared to surrender to Topamax yet. My memory was also severly impaired, by the way.

   Best of luck!

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

Submitted by Summer-Lilly on Sat, 2008-04-05 - 03:21
Thanks for your comments! It is good to know that I am not the only one going through these very 'surreal' emotions. I am an artist, and my work has suffered greatly, which has been the hardest part of all. It's a scary thing. I have tried (I think?) nearly all meds except Keppra, which is the next med my neurologist wants to put me on. I am just so scared to try anything else, as Topamax has unfortunately given me some very dark days. I live in a remote part of Australia, and where I live there are only two neurologists in my area. The first doctor I saw overdosed me on medication, so badly, that I was hospitalised, and so now I am with my second doctor, who compared to the first, is much better, but I feel, he just wants me to get on with my life, and 'put up' with the side-effects. Thanks all for your comments! I really appreciate your kind words!!!! Summer :)

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

Submitted by bex on Mon, 2008-04-07 - 12:36

I was on Topomax for 1 months and finally came off it 2 months ago because of all the cognitive problems, side affects and my hair was falling out. My memory is still bad though and I am still not the same I ever was before starting the meds, but get told it could be the meds or a worsening of the epilepsy. I have tried 6 different med combos and none have worked and in fairness the topomax did reduce the intensity of my seizures and migraines so in time I may consider trying it again on a lower dose. Since I come of it people have commented that I have my sparkleand smile back and speak better as on it I was a bit blank and not there. I am thinking about trying the low gi diet or a gluten free diet as I have read this may help seizure control and stay off the meds for at least 6 months. Best wishes all! Bex

ps have just realised this should have read 12 months

I was on Topomax for 1 months and finally came off it 2 months ago because of all the cognitive problems, side affects and my hair was falling out. My memory is still bad though and I am still not the same I ever was before starting the meds, but get told it could be the meds or a worsening of the epilepsy. I have tried 6 different med combos and none have worked and in fairness the topomax did reduce the intensity of my seizures and migraines so in time I may consider trying it again on a lower dose. Since I come of it people have commented that I have my sparkleand smile back and speak better as on it I was a bit blank and not there. I am thinking about trying the low gi diet or a gluten free diet as I have read this may help seizure control and stay off the meds for at least 6 months. Best wishes all! Bex

ps have just realised this should have read 12 months

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