Feeling a bit like Alice in Wonderland on Topamax!

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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 777blessings on Sat, 2008-04-19 - 10:29

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.

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.

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.

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

Submitted by bevs on Sat, 2008-05-10 - 05:53

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

This is exactly what happened

Submitted by MiksRobs on Sun, 2018-10-28 - 12:47

This is exactly what happened to me! I had a fever at 8 and hallucinated these same odd feelings, a bit more vivid being fever induced, however. I used it as the basis for describing them once they began reoccurring. Personally, these sensations started happening more frequently around age 10-11. Like you, I found the strongest symptoms triggered as I attempted sleep. Too, I blew it off as my insomnia. With age, it happened more intensely, frequently, and for longer durations. I was also aware the sensations were physically impossible, but can attest they felt like an undeniable reality. I would become very frustrated by my lack of understanding snd control over what proved to be somewhat fearful and beyond disturbing. I tried to tell my mom I was being “suffocated” by parts of my body....that they were puffed up and felt enormous with heavy pressure...like a giant balloon in the Macy’s parade, but attached to me. I also described these symptoms to my therapist at age 13...to which she assumed to be anxiety over sleeping...In March, I had two seizures, but ignored them as anything serious. In May I started getting grand mal seizures regularly. It started with three a day, sometimes more or less...they continued to gain in their frequency and violence. After five ER stays, I was sent to undergo intense studies by Regions neurology team who help lead in the field of neurology. The doctors went into all past “seemingly odd” circumstances that involved tingling, twitching, body displacement, numbness in extremities, weakness in muscles, pain in joints, feelings of distance in parts of my body....all questions like that. I had answered yes to all but assumed it as normal up to that point. After extensive monitoring and countless long testing, it was determined my seizures were caused by the misfiring of neurons that had been incorrectly wired, therefore transmitting wrong....you mentioned you had some trauma...well to my shock, trauma is the root of my seizures. I’ve had nonstop bullshit in my life for the entirety of my life, but I had always been the person to just tell myself I was fine and didn’t need any help because I felt like I was doing fine on my own. Each time a trauma occurred, only one side of my brain processed it as reality...while the other hemisphere remained in denial. With brain scans, it shows one side lit up as rhe other remains blank. It was cool. My brain had “bruises” in a sense...for every trauma or bruise, my brain would compensate for whichever hemisphere didn’t process the trauma. By one side of the brain wiring the neurons representing each specific trauma alone, they were incorrect...which lead to incorrect transmission leading to the misfiring of neurons provoking the violent seizures. Because I also have a genius level IQ, everything was even more jumbled and intense. It’s obviosuly taken my brain 23 years to have gotten to that point, but truly incredible. It’s called conversion disorder or some refer to the seizures as PNES. I’m now doing neurology based trauma therapy in which my brain learns do utilize both hemispheres equally while remembering each specific traumatic event. Once the scans show a use of both sides, the brain begins to consistently remember each event equally and wires it to match...no more misfiring, no more seizures! I just started the treatments, but the science backs the theories and results in its use so far have been almost entirely successful. I’m hoping for the best though a natural skeptic of all these days. My mind has always been my greatest gift, but also complicated my life immensely. Imagine a brain wired with a need to understand & compute every concept of every waking moment...put said brain in less than ideal living situations while neglecting to love or understand it....then sprinkle a shit load of severe and constant trauma on top accompanied by negative coping behaviors....You get exhibit A! Though I’ve made mistakes in my life, and seen by some as neglectful of my health and it’s severity, I tend to disagree. Acutely aware of all I am and continue to become, I don’t stress over what I cannot control. My maturity and experiences have left me morally and intellectually sound, which I value deeply. I handle things with a nonchalant spproach, and I’m still kicking....so....Anyway, I highly doubt you’ll end up plagued with seizures (I pray to God) or any other brain quirks...but as baffled as you by the sensations of disproportionately large/small/heavy extremities of the body, I had to reach out and reassure you that you are not crazy. I’m relieved to know I am not the only individual who feels freakishly enlarged!Sorry this post is so much. My brain tends to spin out....I would just urge you to keep the good work by staying self-aware....and if your symptoms progress, don’t hesitate to seek care!Good luck to you!!

This is exactly what happened to me! I had a fever at 8 and hallucinated these same odd feelings, a bit more vivid being fever induced, however.  I used it as the basis for describing them once they began reoccurring.  Personally, these sensations started happening more frequently around age 10-11.  Like you, I found the strongest symptoms triggered as I attempted sleep.  Too, I blew it off as my insomnia.  With age, it happened more intensely, frequently, and for longer durations.  I was also aware the sensations were physically impossible, but can attest they felt like an undeniable reality. I would become very frustrated by my lack of understanding snd control over what proved to be somewhat fearful and  beyond disturbing.  I tried to tell my mom I was being “suffocated” by parts of my body....that they were puffed up and felt enormous with heavy pressure...like a giant balloon in the Macy’s parade, but attached to me.  I also described these symptoms to my therapist at age 13...to which she assumed to be anxiety over sleeping...In March, I had two seizures, but ignored them as anything serious. In May I started getting grand mal seizures regularly.  It started with three a day, sometimes more or less...they continued to gain in their frequency and violence.  After five ER stays, I was sent to undergo intense studies by Regions neurology team who help lead in the field of neurology.  The doctors went into all past “seemingly odd” circumstances that involved tingling, twitching, body displacement, numbness in extremities, weakness in muscles, pain in joints, feelings of distance in parts of my body....all questions like that.  I had answered yes to all but assumed it as normal up to that point.  After extensive monitoring and countless long testing, it was determined my seizures were caused by the misfiring of neurons that had been incorrectly wired, therefore transmitting wrong....you mentioned you had some trauma...well to my shock, trauma is the root of my seizures.  I’ve had nonstop bullshit in my life for the entirety of my life, but I had always been the person to just tell myself I was fine and didn’t need any help because I felt like I was doing fine on my own.  Each time a trauma occurred, only one side of my brain processed it as reality...while the other hemisphere remained in denial.  With brain scans, it shows one side lit up as rhe other remains blank.  It was cool.  My brain had “bruises” in a sense...for every trauma or bruise, my brain would compensate for whichever hemisphere didn’t process the trauma. By one side of the brain wiring the neurons representing each specific trauma alone, they were incorrect...which lead to incorrect transmission leading to the misfiring of neurons provoking the violent seizures.  Because I also have a genius level IQ, everything was even more jumbled and intense.  It’s obviosuly taken my brain 23 years to have gotten to that point, but truly incredible.  It’s called conversion disorder or some refer to the seizures as PNES.  I’m now doing neurology based trauma therapy in which my brain learns do utilize both hemispheres equally while remembering each specific traumatic event.  Once the scans show a use of both sides, the brain begins to consistently remember each event equally and wires it to match...no more misfiring, no more seizures!  I just started the treatments, but the science backs the theories and results in its use so far have been almost entirely successful.  I’m hoping for the best though a natural skeptic of all these days. My mind has always been my greatest gift, but also complicated my life immensely. Imagine a brain wired with a need to understand & compute every concept of every waking moment...put said brain in less than ideal living situations while neglecting to love or understand it....then sprinkle a shit load of severe and constant trauma on top accompanied by negative coping behaviors....You get exhibit A! Though I’ve made mistakes in my life, and seen by some as neglectful of my health and it’s severity, I tend to disagree. Acutely aware of all I am and continue to become, I don’t stress over what I cannot control.  My maturity and experiences have left me morally and intellectually sound, which I value deeply.  I handle things with a nonchalant spproach, and I’m still kicking....so....Anyway, I highly doubt you’ll end up plagued with seizures (I pray to God) or any other brain quirks...but as baffled as you by the sensations of disproportionately large/small/heavy extremities of the body, I had to reach out and reassure you that you are not crazy.  I’m relieved to know I am not the only individual who feels freakishly enlarged!Sorry this post is so much. My brain tends to spin out....I would just urge you to keep the good work by staying self-aware....and if your symptoms progress, don’t hesitate to seek care!Good luck to you!!

This is exactly what happened to me! I had a fever at 8 and hallucinated these same odd feelings, a bit more vivid being fever induced, however. I used it as the basis for describing them once they began reoccurring. Personally, these sensations started happening more frequently around age 10-11. Like you, I found the strongest symptoms triggered as I attempted sleep. Too, I blew it off as my insomnia. With age, it happened more intensely, frequently, and for longer durations. I was also aware the sensations were physically impossible, but can attest they felt like an undeniable reality. I would become very frustrated by my lack of understanding snd control over what proved to be somewhat fearful and beyond disturbing. I tried to tell my mom I was being “suffocated” by parts of my body....that they were puffed up and felt enormous with heavy pressure...like a giant balloon in the Macy’s parade, but attached to me. I also described these symptoms to my therapist at age 13...to which she assumed to be anxiety over sleeping...In March, I had two seizures, but ignored them as anything serious. In May I started getting grand mal seizures regularly. It started with three a day, sometimes more or less...they continued to gain in their frequency and violence. After five ER stays, I was sent to undergo intense studies by Regions neurology team who help lead in the field of neurology. The doctors went into all past “seemingly odd” circumstances that involved tingling, twitching, body displacement, numbness in extremities, weakness in muscles, pain in joints, feelings of distance in parts of my body....all questions like that. I had answered yes to all but assumed it as normal up to that point. After extensive monitoring and countless long testing, it was determined my seizures were caused by the misfiring of neurons that had been incorrectly wired, therefore transmitting wrong....you mentioned you had some trauma...well to my shock, trauma is the root of my seizures. I’ve had nonstop bullshit in my life for the entirety of my life, but I had always been the person to just tell myself I was fine and didn’t need any help because I felt like I was doing fine on my own. Each time a trauma occurred, only one side of my brain processed it as reality...while the other hemisphere remained in denial. With brain scans, it shows one side lit up as rhe other remains blank. It was cool. My brain had “bruises” in a sense...for every trauma or bruise, my brain would compensate for whichever hemisphere didn’t process the trauma. By one side of the brain wiring the neurons representing each specific trauma alone, they were incorrect...which lead to incorrect transmission leading to the misfiring of neurons provoking the violent seizures. Because I also have a genius level IQ, everything was even more jumbled and intense. It’s obviosuly taken my brain 23 years to have gotten to that point, but truly incredible. It’s called conversion disorder or some refer to the seizures as PNES. I’m now doing neurology based trauma therapy in which my brain learns do utilize both hemispheres equally while remembering each specific traumatic event. Once the scans show a use of both sides, the brain begins to consistently remember each event equally and wires it to match...no more misfiring, no more seizures! I just started the treatments, but the science backs the theories and results in its use so far have been almost entirely successful. I’m hoping for the best though a natural skeptic of all these days. My mind has always been my greatest gift, but also complicated my life immensely. Imagine a brain wired with a need to understand & compute every concept of every waking moment...put said brain in less than ideal living situations while neglecting to love or understand it....then sprinkle a shit load of severe and constant trauma on top accompanied by negative coping behaviors....You get exhibit A! Though I’ve made mistakes in my life, and seen by some as neglectful of my health and it’s severity, I tend to disagree. Acutely aware of all I am and continue to become, I don’t stress over what I cannot control. My maturity and experiences have left me morally and intellectually sound, which I value deeply. I handle things with a nonchalant spproach, and I’m still kicking....so....Anyway, I highly doubt you’ll end up plagued with seizures (I pray to God) or any other brain quirks...but as baffled as you by the sensations of disproportionately large/small/heavy extremities of the body, I had to reach out and reassure you that you are not crazy. I’m relieved to know I am not the only individual who feels freakishly enlarged!Sorry this post is so much. My brain tends to spin out....I would just urge you to keep the good work by staying self-aware....and if your symptoms progress, don’t hesitate to seek care!Good luck to you!!

Feeling a bit like Alice in Wonderland on Topamax!

Comments

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

Submitted by 777blessings on Sat, 2008-04-19 - 10:29

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

Submitted by bevs on Sat, 2008-05-10 - 05:53

This is exactly what happened

Submitted by MiksRobs on Sun, 2018-10-28 - 12:47

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