Topamax can cause seizures...?

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SmurfyShadow
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Date Joined Dec 2008
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   Posted 4/19/2012 10:27 PM (GMT -7)   
Thank you for your condolences. You don't have to feel bad. I forgive you. I don't judge people either, as I believe in God. Its God that has been keeping me going. You know having 5 family members has been so hard on me. I didn't realize I was also taking it out on people til you spoke up. My 2 aunts and uncle whom passed away was from cancer. My grandmother, in a way was a true blessing. Gma had dementia, her hallucinations were just horrid. She would be thinking and seeing dead children's body parts everywhere. I was her sole care taker. It really made me sad for her to go through thinking the child's head was on the kitchen counter. I am sad gma is gone, but thankful as she no longer has to have those horrid effects from dementia. My step mother died suddenly, from malpractice. I don't know for sure, but I strongly think its malpractice. She went to the ER for having trouble doing bowels. They focused on everything else but her bowels til it was too late. She ended up having a massive heart attack and they couldn't save her. She was the first to pass away. Seriously, every week, and on a weekend someone passed away for 5 weeks straight. My grandmother died on a Saturday morning, one aunt died Saturday night. Two days after my grandmother passed away, my biological mother fell breaking her foot in 3 places plus dislocating and shattering her ankle. I was so wrapped up in taking care of my bio mother that 20 minutes before we had to leave for Gma's funeral I smacked myself in the head. Mom said "what is it?" I looked at her and said "Mom we forgot the flowers!" and she said "oh no" So I ran into the yard, cut some ferns, daffodils and some kind of filling. I grab a vase and put water in it and of course then its time to leave.... so I tell my brother "quick grab the bouquet of artifial flowers on the coffee table" he grabs it, and as he drives I'm making the daffodil bouquet. I wish we had time to actually go to a florist. So it was interesting. I felt bad that I forgot about the flowers though. I found out a couple weeks ago that I need chemo again. So I'm stressed with everything.

Withdrawal symptoms isn't good. You should call your doctor or start at a small like 5mg again. It is very important, esp on topamax to be weened off. I had to restart mine, but when I got off it before, I was dropping every 5mg a week so I went from 100 to 95 to 90 so on. In your case though, you should call definitely.
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

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Health Mess
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Date Joined Apr 2012
Total Posts : 4
   Posted 4/30/2012 11:38 PM (GMT -7)   
I have had a similar experience. I had a spinal fusion and could not take ibuprofen, which controlled my migraines. The neurologist put me on Topamax, as soon as I reached the prescribed dose I had a simple partial seizure. I have never had seizures before and now I have been diagnosed with epilepsy, after many more. I have mentioned this to a couple of doctors and they do not think there is a link. I have also had memory problems since then.  There is a reason they call it "Dopamax".
I am a health care professional and have always gotten angry when other professionals do not look at the evidence and just want to believe what they want to believe. I had one very intelligent and competent emergency room nurse argue with me that Chantix did not cause anger or depression and that it was just whiney people finding a med to blame it on. Now they know it can cause these symptoms. They call people with fibromyalgia liars and say how they are psychiatric patients and are crazy. It drives me nuts! They call frequent migraine sufferers who go to the E.R. and beg for pain meds drug seekers (some actually are and you can doing them more harm by giving them pain meds, but it is so hard to differentiate).
Everybody is different and reacts to meds different, just because it is a miracle for one does not mean it can't be hell for another. You cannot go by your own experiences with a drug and say the same thing will happen to everyone.
I am back on ibuprofen for my migraines, I am very fortunate that 800 mg works for me (of course, I have ulcers). I can empathize with all of you that have had to try so many different meds and have not found relief. I do not know what I would do if I had to endure that. I hope you all find relief with the least amount of side effects.

Hammond Man
New Member


Date Joined Apr 2012
Total Posts : 12
   Posted 5/1/2012 5:23 AM (GMT -7)   
And then there's Lipitor.

A colleague was taking it for a brief time and was complaining about severe pain in his leg. He saw several doctors, had x-rays, etc. and they found nothing. He asked if the drug could have anything to do with it and was repeatedly told no. Several months after being off work I decided to pop in and visit some friends. My colleague told me that as soon as he stopped taking Lipitor the pain went away. I told him not to ever let a doctor tell you something's impossible just because they haven't heard of it. A year or so later, the official list of side effects includes...you guessed it...leg pain!

Clinical trials do NOT reveal all side effects of drugs. It can take years of use for them to be revealed, or the right conditions (i.e. pregnancy) or just a poor unfortunate soul who's brain doesn't mix well with it.

Post Edited (Hammond Man) : 5/1/2012 1:05:10 PM (GMT-6)


Health Mess
New Member


Date Joined Apr 2012
Total Posts : 4
   Posted 5/1/2012 12:02 PM (GMT -7)   
Great example!
I do have to say, that most doctors will discontinue the medication if you report an odd side effect. To their credit, I believe most of them agree with us and most want to give the best care to their patients as possible. They sacrifice a lot to care for nuts like me. lol. I wouldn't give my primary or my neurologist up for any amount of money.

Hammond Man
New Member


Date Joined Apr 2012
Total Posts : 12
   Posted 5/1/2012 12:17 PM (GMT -7)   
So I'm curious. Are you still having seizures? And if so are you conscious during them? Mine were originally like staring spells. I'd freeze up, couldn't move or much if at all, confused, I didn't know what I was doing but I was fully aware of my surroundings and eventually I'd just snap out of it. Then I was misdiagnosed with an anxiety disorder. Any neurologist will tell you that anti-depressants can provoke more seizures. But in my case they went from staring spells to twitching, shaking and full body convulsions. The effects are permanent. And I'm STILL conscious. It's not a pleasant experience.

A month ago one of my meds was switched from a generic to brand name. At first the seizures were under much better control. Now it's worse in some ways.

I wish I just had just decided to live with the migraines. I'd rather deal with pain than this nightmare.

Cheers!

Health Mess
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Date Joined Apr 2012
Total Posts : 4
   Posted 5/1/2012 12:27 PM (GMT -7)   
I am very fortunate that my neurologist put me on Keppra after about 20, so they did not progress past simple partial seizures. The Keppra works , but causes extreme fatigue and depression. She has recently put me on Lamictal, which is helping with the depression , but now I have trouble sleeping. lol. I am very hesitant to stop taking these meds because I know that they can progress to Grand Mal.
I am very sorry to hear you are having such a hard time. It sounds like a very scarey experience.
I am in agreeance with the meds for migraine. I wish I never took Topamax, but there is no way to know. SOme people swear by it and it has been a godsend. im just not one of them. lol.
I have also had problems with anti-depressants. Since I was about 11 years old I have suffered from chronic depression and Seasonal Affective Disorder. Doctors have tried all kinds (SSRI, the old ones, SNRI) and none of them work and they make it worse and make me suicidal. I had one neurologist tell me that I had very sensitive brain chemistry and I think she is right.
I hope you get the relief you need. I know how frustrating this merry go round can be. Wondering if you should take more medicines to help or if that is just causing new problems and you just keep chasing good health. I hope you catch it. God bless.

develliott06
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/16/2012 10:08 AM (GMT -7)   
I have been taking Topamax for over 2 1/2 years and I have noticed alot of things happening to me that I am not real sure why it is happening I am only 33 yrs old .. I used to be a great at spelling , My eye sight was slightly off but now is getting worse by the yearly exam . mad I went from a little over 200 lbs to 140 lbs which this will be the one and only thing i will not complain about cause I needed to loose that . Then within the last couple months something really strange has started to happen and i'm not even sure If it is what I think it is . It doesn't happen all the time or at certain times other then its when I sleep . I can be a sleep and feel like its a dream, I can't move my body, my tongue feels strange like it is shaking in my mouth and when I wake up , come to or whatever my whole body feels like i just did one heck of a workout. my muscles are sore all over but it doesn't last very long . the strange thing is this only happens in my sleep not while i'm awake . is this a seizure ? I can not answer this i never had one before to know what they feel like . it doesn't happen once a week or even once a month sometimes it is just when ever it does it . so my thought is how do i go to the doctors and them not think im a crazy women with this . can anyone give me some insight to this?  

Hammond Man
New Member


Date Joined Apr 2012
Total Posts : 12
   Posted 9/16/2012 1:37 PM (GMT -7)   
Hello develliott06.

Yeah the spelling, math skills, etc. can be swiss-cheesed by this stuff. Your neurologist can explain more how it can affect your cognitive abilities. I was on a minimal dose and I couldn't compose an email to save my life for months!

As for your eyesight get them checked IMMEDIATELY if there's any pain as Topamax can cause blindness (glaucoma).

The weight loss aspect is usually welcomed by women. The drug has gained a reputation for it so it's been sought after solely for that purpose. Dangerous games.

As for your "night seizures" - perhaps a video camera can help document the event if no one else is available. As you've probably read there's a huge debate over whether Topamax can actually causer seizures outside the usual ones you'd get from sudden withdrawal of many anti-epileptic drugs. I'm one of the "yes it can" people. Your doctor should be well-informed about the other issues. As for the latter...the jury's still way out on that one. I'll just say this: Neurontin. It's been used for about 18 years for epilepsy and neuropathic pain (e.g. from shingles) but it has recently been determined that it can create seizure disorders in patients who were not using it as an anti-epileptic. Lawsuits are pending. So the question, "Can AEDs create a seizure disorder?" can be answered with a yes. Can Topamax do this? So far the official word is no.

Almost all of the neurologists I've seen have diagnosed me with a non-epileptic psychogenic seizure disorder (pseudoseizures - as in "go see a psychiatrist.") Funny enough the psychiatrists have determined it is not a psychiatric condition and could only go so far as to label it an "atypical seizure disorder". Neither specialist can explain them and so I'm caught in the middle. Funny thing is AEDs DO help but I can't tolerate the side effects. What does help: nature's AED (aka marijuana). When used properly (look up GW Pharmaceuticals) is can actually provide seizure relief without getting you high. Expect the drug to hit the market within the next several years. Absolute minimal side effects when compared to AEDs that were created in a lab and it's been growing all around us! It'll have the other companies' accountants shaking in their boots! :D

Take care and good luck!

DISCLAIMER: I am not a doctor. I am a Doctor Who fan.
Well, to be fair I did have a couple of gadgets which he probably didn't, like a teaspoon and an open mind.

Tweetybaby
New Member


Date Joined Mar 2013
Total Posts : 2
   Posted 3/12/2013 10:54 AM (GMT -7)   
I never had siezures before they put me on topomax. Yes it helped with my migraines but now I have to live a problem that I never had to before. It stinks! So be warned the side effects aren't worth it!

ms lady
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/13/2013 10:45 PM (GMT -7)   
The name of this thread caught my eye, as I have been taking topamax for 3 or 4 years now, regularly. As of the latter half of 2011, I had began losing consciousness on many different occasions. Each time I woke up, people surrounded me telling me I stopped breathing and had what they describe as somewhat of a horrifying seizure. I have blacked out before, but NEVER had quite the same experience as what was described to me. Each time since the first, it happened the same way. My neurologist referred me to a different doctor who would go on to diagnose me with low blood pressure, causing me to faint. I never got a clear explanation for the seizures, and seeing this posting worries me that there may be a direct correlation to topamax and the seizures. Anyone with a similar experience?

Tweetybaby
New Member


Date Joined Mar 2013
Total Posts : 2
   Posted 3/13/2013 11:01 PM (GMT -7)   
That is exactly same thing going on with me. The doctor that gave me the topamax told me it was low blood preassure. Mind you I have had low blood preassure all of my life and never had the seizures and blackouts til topamac entered mylife. Now trying to find a new doctor is a pain in the rear and I feel stuck. No more alone .since findin this website

cookster78
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/28/2013 3:49 PM (GMT -7)   
My five year old has epilepsy, she has had it for about two years. Keppra, Zarotin and Depakote don't work. We found a new doctor and he prescribed her Topamax. It only makes her worse, her seizures are increasing and her behavior is awful. I am so against Topamax, Depakote made her a little hostile too but she's dangerously hostile and irritable with Topamax.

cookster78
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/28/2013 3:53 PM (GMT -7)   
develliott06 said...
I have been taking Topamax for over 2 1/2 years and I have noticed alot of things happening to me that I am not real sure why it is happening I am only 33 yrs old .. I used to be a great at spelling , My eye sight was slightly off but now is getting worse by the yearly exam . mad I went from a little over 200 lbs to 140 lbs which this will be the one and only thing i will not complain about cause I needed to loose that . Then within the last couple months something really strange has started to happen and i'm not even sure If it is what I think it is . It doesn't happen all the time or at certain times other then its when I sleep . I can be a sleep and feel like its a dream, I can't move my body, my tongue feels strange like it is shaking in my mouth and when I wake up , come to or whatever my whole body feels like i just did one heck of a workout. my muscles are sore all over but it doesn't last very long . the strange thing is this only happens in my sleep not while i'm awake . is this a seizure ? I can not answer this i never had one before to know what they feel like . it doesn't happen once a week or even once a month sometimes it is just when ever it does it . so my thought is how do i go to the doctors and them not think im a crazy women with this . can anyone give me some insight to this?  
 
My five year old is on Topamax for her seizures and her coordination is way off and her language skills are staggering. There will be times when she wonders off and her mind isn't really there. It also makes her aggitated and hostile too.

cookster78
New Member


Date Joined May 2013
Total Posts : 3
   Posted 5/28/2013 3:55 PM (GMT -7)   
ms lady said...
The name of this thread caught my eye, as I have been taking topamax for 3 or 4 years now, regularly. As of the latter half of 2011, I had began losing consciousness on many different occasions. Each time I woke up, people surrounded me telling me I stopped breathing and had what they describe as somewhat of a horrifying seizure. I have blacked out before, but NEVER had quite the same experience as what was described to me. Each time since the first, it happened the same way. My neurologist referred me to a different doctor who would go on to diagnose me with low blood pressure, causing me to faint. I never got a clear explanation for the seizures, and seeing this posting worries me that there may be a direct correlation to topamax and the seizures. Anyone with a similar experience?
That is scary, I know when my five year old acts out or wonders away, she has no recollection that she even did it. Kind of scary but she didn't know she even acted that way or remember when that happened.

atkin
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/5/2014 4:07 AM (GMT -7)   
hi new to this. My daughter been taking Topamax for one and half year now on and off. She has iih which causes really bad headaches. And she had vp shunt fitted in august 2013. She has been on Topamax on and off and also the dose has been increased and decreased. She come off them Sept and back on them in nov which she fainted twice. Then she come off them in dec. And in march the nuro doctor put her back on them she then collapsed twice was taken onto the children ward and they increased her dosage than she started having seizures up to six a day. They tested her for epileptic and came back all clear. Never had seizures before. This has been going on now for four weeks and still having seizures four a day. Done a ct scan and and xray and blood test all fine. I am having to deal with myself at home with doctors don't seem to be bothered. waiting to have a tilt table test to see if its her blood pressure. But reading on here I now think it could be the Topamax. Which I did say to the doctors could be that. No help from any body. My daughter 17 And I am having to take time off work to be with 24 7 because she struggles to breathe when she comes round. Anyone else had this happen to them. Don't know if I should take her off them slowly. We have had enough of them and no help.

Holdthepickle
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/17/2014 2:18 AM (GMT -7)   
Would not recommend this drug to anyone suffering migraines. Only 18 and I been on it twice. 1st time took it for 6 months following 2 years of constant migraines, suffered horrible side effects. I struggled with horrible memory loss, I was confused all the time and was pretty much out of it and it didn't really stop the migraines. I took myself of it (with doctors consent) but still had the migraines, and they got even worse. Went to a specialist consultant who again prescribed me them. I again was on them for about 5 months, experienced all the same symptoms. This time, I ended up in hospital for 2 weeks having seizure after seizure (must have been over 100) of all kinds, from absences to partial etc. I have never before had a seizure and the doctors couldn't figure out why I was having them. Had all the tests done etc and to this day I have no 'diagnosis' because the Doctors aren't going to admit that the Topiramate/Topamax caused the seizures. Fortunately I consider myself very lucky as the seizures have now gone, I haven't had one all year and my migraines aren't everyday. The seizures reset my system and now I only get a handful of migraines each month which for me is perfectly manageable. With hindsight, I wish we had done more research on the drug before I took them, If I had come across this thread I wouldn't have risked it. The problems I have had have caused so many problems, I had to repeat the school year, can't drive, have to declare the fits to name a few. Wouldn't recommend anyone with migraines take these, especially if you are young. My doctors think it could have been hormone related. I understand it works for some but I was unaware of the horrid side-effects which honestly made me feel so bad for so long.

Hammond Man
New Member


Date Joined Apr 2012
Total Posts : 12
   Posted 7/27/2014 9:58 AM (GMT -7)   
Well it's 2014 and the side effects of Topamax have been revised. Here's the kicker.

"Some side effects can be serious. If you experience any of the following symptoms, call your doctor immediately:

A symptom of overdose is worded as "the inability to respond to things around you". I experienced this side effect at the MINIMAL dose. It never went away. Of course this description resembles a partial seizure.


I was diagnosed by a psychopharmacologist with an "atypical organic-effective seizure disorder" six years ago. I recently found out about this "new" side effect and consulted my pharmacist. She agreed with the psychopharmacologist. My brain was hyper-sensitive to Topamax and therefore OD'd on the initial dose. After ceasing the drug immediately I went through withdrawal but the "seizures" never stopped. The damage is permanent (8 1/2 years and counting).

I wish I'd stuck to painkillers for my migraines. Now I have two problems to deal with.
Well, to be fair I did have a couple of gadgets which he probably didn't, like a teaspoon and an open mind.

Post Edited (Hammond Man) : 7/27/2014 11:01:55 AM (GMT-6)


clsmarcus
New Member


Date Joined Nov 2015
Total Posts : 1
   Posted 11/8/2015 6:56 PM (GMT -7)   
I am having sever reaction to Topamax. Lose of memory, seizures, tingling, i can not drive and I have a seve disable daughter that is 140 pounds to transfer and care for. My primary is not happy with the care my Nero is giving me so she sent me to a Neurotologist. He was AMAZING !!! It is a different out look on migraines. Although my BP is low. He is placing me on a BP med and naproxen. I have done research and many with chronic migraines have been free for years at a time with this. He has found the the way they have treated migraines in the past has only enhanced them due to meds make you overly tired after a period of time keep you a wake or lose true sleep and cause more symptoms or more types . Right now I am on 6 different meds and 4 straight months of migaines, very little sleep, now with side effects of topamax. I am willing to give it a try.

Hammond Man
New Member


Date Joined Apr 2012
Total Posts : 12
   Posted 12/15/2015 8:12 AM (GMT -7)   
atkin said...
hi new to this. My daughter been taking Topamax for one and half year now on and off. She has iih which causes really bad headaches. And she had vp shunt fitted in august 2013. She has been on Topamax on and off and also the dose has been increased and decreased. She come off them Sept and back on them in nov which she fainted twice. Then she come off them in dec. And in march the nuro doctor put her back on them she then collapsed twice was taken onto the children ward and they increased her dosage than she started having seizures up to six a day. They tested her for epileptic and came back all clear. Never had seizures before. This has been going on now for four weeks and still having seizures four a day. Done a ct scan and and xray and blood test all fine. I am having to deal with myself at home with doctors don't seem to be bothered. waiting to have a tilt table test to see if its her blood pressure. But reading on here I now think it could be the Topamax. Which I did say to the doctors could be that. No help from any body. My daughter 17 And I am having to take time off work to be with 24 7 because she struggles to breathe when she comes round. Anyone else had this happen to them. Don't know if I should take her off them slowly. We have had enough of them and no help.


The same thing happened to me. It's been 10 years now. I'm stuck with this for life.

TSpain95
New Member


Date Joined Jan 2016
Total Posts : 1
   Posted 1/6/2016 11:22 AM (GMT -7)   
Hello, I'm also new here. I'm curious to know what dosage any of you or those you know where on when you experienced seizures.

I'm currently on the medication for 3 months, but a fairly low dosage. I'm having some concerns about side effects, but it's difficult for me to tell if it's the medication or just me. I've definitely been under more stress and have had more anxiety lately so maybe a lot of what I'm experiencing can be attributed to that but it coincides with the side effects of the medications, and I can't help but feel that I've gotten worse. I've experienced a loss of appetite, not on all days, but on most especially when I first started taking the 100mg a day. Also my depression and anxiety just seem to have increased quite a bit. Once again not sure if it's just natural course of things or if the medication is playing a role. The thing that bothers me most about this and makes me think the medication could be intensifying it is that I've been having a lot of uncontrollable thoughts not necessarily. Not to be all dark and stuff. They are more bothersome than anything because I have no actual desire to harm myself, but still there they are. It's sort of strange like someone is hijacking my thoughts, immediately after I'll think 'no that's silly'. I also get nauseous quite a bit, could be the cause for the loss of appetite, and my tingling isn't just in my fingertips like the neurologist said it would be, it often is my whole hands and feet. It is really bothersome in my feet and feels like they are asleep. Also in my lips and tongue from time to time. Haven't said anything to the neurologist yet because I really want less migraines. I'm hoping any side effects the medication may be causing will subside.
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