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Feeling a bit like Alice in Wonderland on Topamax!

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

I have'nt had Topamax yet!  But I'am getting a bit concerned about the way Epi's are treated concerning there med's across the world especially in the U.S.A.  Now I'm not getting at your system's of treatment who am I to say yes or no but 8 months of suffering to be told hang in there. I mean how long does he  /she want you to hang in there for, I may be wrong but I would have thought if it was going to work it would have by now. Surely there must be other med's you have'nt tried yet or combinations that have had partial success with minimal side effect's.  Granted there are good doc's and bad doc's no matter where you live.  Ever thought of getting a second opinion if possible.  Some one out there might be able to give you better advice than I. But I have only your best health at heart.

Hope you get better soon

plopdan u.k

I switched from 2500 mg of Depakote to 400 mg of Topamax in November 2006 I think I had completely gotten to the 400 mg of Topamax by January and after that I had crazy tingling in my hands feet - weird double vision, my moods would swing from really, really ecstatic to super depressed -- like ready to die, crazy sensations in my head and double vision. I was convinced I was dying from some horrible disease or like I wouldn't live the next six months. By April I had developed a full on anxiety disorder. And my neuro had stopped returning my calls. I don't know if this means. Sometimes I feel like everything in the room is smaller and I am gigantic. Reading these posts makes me feel like maybe it is the med. I have never in my life been on medication until these seizures started 51/2 years ago. I thought maybe I was experiencing withdrawals from Depakote. Everyone says my personality has changed this year. Maybe it's the Topamax. It's taken me forever to finish my projects. I'm in grad school. I can't think or teach classes as clearly as I used to. My relationship is falling apart because I forget to do things and be as cheerful and sweet and romantic as I want to be. Help!

Were you ok on a lower dose of Topamax? It may be that you just need to lower your dose...or you need to come off it all together.

I've been on topamax since 1996 (I'm on 450mg right now). The side effects I had when I first started were:

Severe tingling in fingers and toes (like they were falling asleep- but it wouldn't go away). This side effect went away about a month in to my top dose- although I still get mild tingling if I'm very sleepy or dehydrated.

Hair loss- lots of it!! My hair went from long to short, was freaky. It fell out and broke and felt like straw. You'll be glad to know that this side effect went away too and my hair is growing and healthy and soft again.

Pee problems (don't know how else to put that one). I had to go constantly! And I had to go out of the blue- like I didn't have to go, and then all of a sudden I had to go so bad that if there wasn't a bathroom in the vicinity there was athreat of wetting myself. If I remember correctly I even 'dribbled' in my panties a couple times (eww I know). This went away also, I still do get 'urgency' once and a rare while if I drink too much.

Food/soda tasted bad/weird. Especially chocolate/sweets and diet soda. I was one of the people that went to an anorexic looking weight. The taste side effect went away (or else I got used to it?) and I love chocolate and drink diet coke/fresca now just fine. Unfortunately I still look like a twig even if I eat like a cow.

Concentration left the building. I'm smart- I wasn't smart anymore. This side effect didn't go away- but it is better, probably with 'adaption'. Learning new tools to concentrate.

Memory= gone. All short term memory just disappeared. someone could tell me something, then ask 5 minutes later about it and I was like 'huh?'. It felt awful and humiliating. They don't nickname the drug "Stupimax" and Dopamax for nothing. This side effect is much improved- again with adaption, and the use of memory tools. I play alot of brain games like crossword puzzles, math games, etc. At first it was horribly frustrating because things that used to be easy all of a sudden were really really hard- but now, well- they're kind of easy again. Short term memory still sucks as far as auditory goes, but I'm able to recall most things.

In the mornign I saw 'light chasers' in my eyes. In fact I jiggled my head and would walk around the room just to see them because I thought they were funny. This went away- I don't remember when though.

Hot/cold temperatures are very extreme (still) didn't go away.

Joint pain didn't go away.

Mood side effects- I changed on topamax entirely. From easy going to irratable, jumpy, depressed and just flat out moody. I'm still very different than I was pre-topamax. I'm alot more irritable. I get angry easier. But, It has stabalized. I'm not depressed and as a whole I'm happy.

Topamax was the first AED that stopped my gran mals. the one time I tried to stop topamax I had another gran mal. I think if I could find something else to use I would. so far though - this is it. I still have partial complex seizures. I take Dilantin and lamictal for those.

The things that I use to help the side effects of topamax (that work): Water, Postassium supplements (this is the most important one), selenium supplement (for hair), and when there used to be the funny tingling around the mouth- I sat down and breathed into my hands.

I know that was long but maybe it will help someone who's taking topamax see that they're not going nuts. I'm sure I left out about a million side effects but I think i got the most annoying ones for me.

 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'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 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!

So Sorry to hear about your experience. I had similar reactions but a little more severe. I found out that I was allergic to topamax. Check with your Neuro to see if that could be a possibility. It was in my case. I hope you feel better. My prayers are with you!

We can get through this together.

Nina :)

Hello, I've been on Topamax for a while now and that's one thing that I haven't experienced!  I'm going to have to agree with Nina that it might be an allergic reaction!  As far as hanging in there goes, ask your doctor if he/she would want to hang in there if they had these feelings?  I truely can't believe the gull of some of these doctors that I read about, it just blows my mind, well what I have left!  All meds affect people differently but having to "size things up or down" is not normal!  8 months is a long time to have to go through something like this, if I were you I would definitely look into a new Epileptologist!

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!

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 :)

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 have to say, it is a bit comforting to hear that other people have experienced the same awful side effects that I had with Topamax, not that I would wish it on anyone. It does make me feel better knowing that I am not crazy though, like I sometimes felt. I had horrible issues with my speech; after a little more than a year my speech pattern was drastically altered. I could not retrieve words from vocabulary; I could not put together a sentence correctly. My memory has never been the same; I could no longer retain information in the same way that I had previously. My eyes also began acting funny; all of the sudden, my eyes would cross and it appeared that my nose had grown drastically. Not long after experiencing all of these symptoms, I had a breakthrough seizure and that was the end of my experience with Topamax!

did you know there is a disorder actually called "ALICE IN WONDERLAND" syndrome!! how cool is that. lol i hav this problem but in not on topamax im on lamictral 100mg  ATM but i'm incresing it to 150mg soon. its funny at first like u said , but now it bloody scary !! ive had this problem for years but it still scares me and i suffer from 5 diffrent types of seizures. i hope u find a better med that suits u better.... lots of lov from sophia hill ..uk xxx

I had the Wonderland thing happen only once, when I was weening onto it from Keppra and must have been having psychotic episodes. I was at my counselors office and she's grilling me about tracking down my nuero and getting me lowered since I'm behaving so oddly and I'm instisting its fine and that I'll be over it as soon as the transition is over. Suddenly she looks at me and says "What are you looking at?"
"Nothing" I didn't want to tell her the room suddenly began expanding and I was shrinking.
"Your eyes are tracking something. And you stared at the flower pot in the waiting office for 15 min. so don't tell me nothings wrong!"

It was so the wrong time to start shrinking and expanding and keep a straight face about it.

I've had that all my life.... Don't worry to much about it.  It hasn't killed me yet.

This is from Epilepsy Ontario's Website

It's something called micropsia.  It's neat when you think about it.

Alice in Wonderland Syndrome

By Estefan Ellison

In the book, Alice in Wonderland written by Lewis Carroll, the title character finds herself growing and shrinking in one chapter. It is interesting to note that some people have actually felt like they have experienced this and this symptom was named after Alice, because of that chapter in the book. However, in the book, Alice grows because of eating and drinking some strange creations. People with Alice in Wonderland Syndrome (or AIWS) feel that their body is changing, because of migraines and headaches. They don't just see themselves changing in size, though, but they also see other people, animals and objects look larger or smaller than they actually are. They can also feel that their hearing and sense of touch have changed. Like what happens to Alice in the beginning of the book, some people with epilepsy who also have AIWS can feel like they are falling down a hole. Lewis Carroll himself had epilepsy and that is what inspired some of Alice's adventures (most notably falling down a hole and feeling like everything is growing or shrinking). AIWS can also be referred to as Micropsia. Some of the causes of Micropsia are complex partial epilepsy and drugs (like the way it is depicted in the Lewis Carroll story).

Like other types of epilepsy, children are the most affected demographic with Alice in Wonderland Syndrome. Most of the effects of AIWS occur in the dark, where children feel scared the most. Some cough syrup ingredients might cause AIWS and since parents give cough syrup to their children while they are young, they will most likely get it. Other causes for AIWS in children are Epstein-Barr virus and Mononucleosis (or Mono for short). However, sometimes Micropsia will not last for the entire child's life. Most times, the symptom will last for only one month.

Hi i have just been on topamax for about three months and have had some scary moments one was for about two weeks i couldnt walk properly it was so strange but it wore off ,the only side effect im left with is about half hour after i dont stop talking for about 2 hours!!! the family at first thought it funny but know im getting my revenge because im driving them nuts.But on a different note if your not happy for a while on this drug then talk to your neurologist ,but like so many of us, new drugs always bring new unwanted side effects some we have to live with but some side effects are more horrid then the illness ,ive often had the alice in wonderland feeling and yes its scary it was like being in a permenant state of petite mal!! but with time it wore off . i hope this shows that your not alone summer i send you lots of positive hope from BEVS

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