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Topamax can cause seizures...?

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Posted 3/25/2011 7:26 AM (GMT 0)
If it counts for anything, just searching the web I've found some posts written by people who have taken Topamax and have either lost consciousness and/or had a seizure while *on* the medication, as opposed to the usual "getting a seizure in withdrawal."  These were also people who had no prior history of seizures.  Not to sound like a complainer--and while I'm aware it's anecdotal evidence--but it's reports like these that contribute to my burgeoning opinion that this is a dangerous drug to be used only in cases of genuinely crippling, genuinely diagnosed migraines.  My "migraines" are neither crippling nor accurately diagnosed (about 15-20 episodes of mild car sickness per year, that's a diagnosis!?) so I think I'm going off this s**t after three days.

My brother got his first seizure at 32.  He was put on Keppra, an anticonvulsant, which ended up giving him more seizures, rather than less.  (If you read all available literature on Keppra, you will find an infrequent statement that reads like "in rare cases, may *cause* seizures."  It seems like anticonvulsants are also pro-convulsants in some cases.)  The moral of the story is, once you get a seizure for any reason, there's a good chance you'll get a lot more of them.  Epilepsy is a devastating disorder, and one to be avoided at all costs.

Posted 3/26/2011 2:50 AM (GMT 0)
Your letting those posts that you read scare you away from a drug that actually may help you. You haven't even given Topamax a fair shake. I read all those awful things about the drug too, when my neurologist suggested I take the drug. I did not think my migraines were that bad that I needed a drug that was so strong and scary as Topamax. I told my doctor that she had 3 months of my time and that was all, after that I was going to go off of Topamax. She said fair enough, and agreed. That is how long it takes to know if it would work. Only giving the drug a few days trial is not giving it a very fair chance.

Did you discuss your concerns about seizures and getting seizures with the doctors when they prescribed the medication? If I expressed that much worry to my doctor, she would change medications for me in a heartbeat.

I do however you really should listen to your inner voice. What is it telling you to do? What sort of treatment options are you tending to seak out? Sometimes, if we really listen to our own selves...sometimes they give us answers and sometimes they protects us.

One time I was prescribed a preventative medication. For some reason, I just couldn't take the pills. Something inside me told me not to take them. The med may have worked fine, but something inside me told me not to take them. I went to my doctor and asked to be switched to something else. I have another condition and someone with that particular condition cannot take the med that I was prescribed. The doctor just overlooked it, cause it's not a really serious condition.
Posted 3/26/2011 3:50 AM (GMT 0)
lostinthewoods,

I really appreciate your response.

That's the thing... my inner voice is telling me not to take Topamax.  And your other suggestion is correct, I should have voiced my concern about seizures being associated with Topamax in *some* cases...  possibly my doctor would have prescribed another "core drug."

It's just... I feel I could be one of those unusual cases of Topamax-related seizures.  Anticonvulsants tend to be very heavy-duty drugs, so to speak.  And the fact that I've had this chronic head pressure every day for 7 years--which doesn't really fit any specific diagnosis--it speaks to the idea that my neurological wiring may be unusual to begin with.  Obviously the real concern is the fact a close family member has epilepsy.  I probably wouldn't have these concerns if that never developed.

I'm set to see the doctor again on April 15th.  Unless she can persuade me to try the drug again, I really think another, safer drug--or at least one that doesn't affect the seizure threshold--would be the way to go.  Unfortunately I'm not so sure an "effective" preventative drug which matches that criteria, even exists.

As an aside, I was also given Relpax to take 3 days a week as a migraine abortive drug.  Looking further into it, there is a genuine interaction with Paxil that can lead to Serotonin Syndrome, and my doc never even mentioned it.  It would be an interesting test to see if it helps reduce the head pressure--if so, it could affirm the headache/migraine hypothesis.  But I'd rather be a wimp and not take the risk.

Posted 3/27/2011 2:42 AM (GMT 0)
You've dealt with it for 7 years, may as well wait to see the doc and have a really good discussion before taking anything.

I have always been one to take anything experimental that the doctor wants to try with me, no matter what the condition may be. I once had a skin condition that would normally go away on it's own in a year or so. Horribly ucomfortable. Doctor gave me some experimental drugs to see what would happen. Told me they would make me very sick for the next 3 weeks. Made me even sicker than what the doctor described, but cured the skin condition. I am always game for something experimental. I think my own doctor loves it when I come in, cause I am constantly doing my own experimental treatments of my own. I run them by my doctor just to make sure I am not doing anything dangerous and I am on the right track. Being a human guinea pig hasn't really done any harm to me. For me it is just a willingness to be open to any treatment possible. I think that med I was given for the skin condition is now regularly prescribed for it, I was just a pioneer!

You might just have to trust the doctor, be informed of the drugs and what they are used for and the side effects, and eventually you will have to just have to take a leap of faith and start taking them. No medication will work if they sit in the bottle on your shelf. Ask beforehand how long it will take before you will see results and at least take them for that long, whatever the medication you end up with. Stick with it, and hopefully just maybe, the 7 years will come to an end.
Posted 3/27/2011 3:39 AM (GMT 0)
lostinwoods,

Interesting to hear about your pioneering!  As for myself, though, I've become conservative about taking certain kinds of drugs, and I don't think it's necessarily a sign of weakness.  At this point in time--there was a time when I was different, tho--I'm about as far from a "guinea pig" as you can get.  I believe it's just a difference in style.  In fact being conservative when it comes to medication is quite common, as far as I know.  Nobody wants to take these drugs, really.  But if you have headaches, like we all do here, you want them cured.  Now you have to weigh the risks against the benefits, and see where you come out.  I spent some time thinking about it... Personally, I don't feel my "migraines" are bad enough to warrant Topamax, but I'm glad that you find it to be a helpful medication.  Who knows, I might change my mind.

As an aside.. I hope this isn't another one of those situations where people offer advice and I seem to rebuff it, and then there's kind of a gradual mutiny against me.  Only in recent years have I become aware that getting advice and saying, with care to show respect, "I don't think x or y idea is right for me"... really seems to annoy people.  In any event, call me odd, but I'd rather just state my honest opinion of things rather than mislead someone and say, "yes, that's definitely what I'm going to do."  I actually feel more guilty doing that than I do with my usual skepticism.  That's just my style, and I hope you can see where I'm coming from, because I'm really not trying to offend anyone.

Post Edited (Batman55) : 3/26/2011 9:42:54 PM (GMT-6)

Posted 3/27/2011 4:24 PM (GMT 0)
I was put on Topriamate for Migrains in 2009 and began having Nocturnal Seizures 3 weeks after taking it. I had 1-2 seizures up to 3 times a week in the middle of the night. EVERY doctor I spoke to said the possibility of it being a side affect was zero. I called the drug company that manufactuers Topiramate and they said in clinic trails and small percent of those who were on it for Migrains, with no history of seizures, did end up having them as a side effect. I started coming off the drug in Dec 2009 and have not had a seizure since.

I also lost 10-15lbs, 50% of my hair, developed pallinopsia(eye problem) and basically looked like I was dying.

Julie

Posted 3/28/2011 3:01 AM (GMT 0)

missjulianne29 said...
I was put on Topriamate for Migrains in 2009 and began having Nocturnal Seizures 3 weeks after taking it. I had 1-2 seizures up to 3 times a week in the middle of the night. EVERY doctor I spoke to said the possibility of it being a side affect was zero. I called the drug company that manufactuers Topiramate and they said in clinic trails and small percent of those who were on it for Migrains, with no history of seizures, did end up having them as a side effect. I started coming off the drug in Dec 2009 and have not had a seizure since. 

I also lost 10-15lbs, 50% of my hair, developed pallinopsia(eye problem) and basically looked like I was dying.

Julie

Anecdotal evidence, to be sure, but still..  the proof is in the pudding

Posted 12/10/2011 6:36 AM (GMT 0)
I never had seizures before, ever. I was prescribed Topomax for migraines one year ago. The doctor told me to slowly keep increasing the dose up to the final one I was supposed to take. It took some time, but by the time I got to the dose that I was suppose to be on I was like a zombie. I experienced: tingling in hands, arms and legs and soda lost its sweet taste. This lasted for a few days and then new symptoms occurred:

I could not drive because I could not judge distance
I was walking in circles for no reason
I had unexplained feelings of OVERWHELMING fear
My brian was getting stuck and in my mind I kept repeating phrases like "What am I doing" "What am I doing" on and on
I could not perform my work (ex make employee schedule) because I would not understand how
I could not remember simple things like my ID to punch out from work (one I had used every day for 3 years)
LASTLY I had a couscous partial seizure. First my brain got stuck and did not understand simple tasks. Then I started (in my mind) to repeat phrases. Next, I realized that I cannot move my body. The only things that I was able to move were my eyes. It lasted about 10 minutes. I was not able to speak or call for help. However, by then my brain got unstuck and I could understand everything. My speak came back first. I called faintly "Alma" to my friend, but she did not hear me. Few minutes passed. I was like a stone statue with the exception of one of my fingers, which was seizing/ twitching continuously. Eventually, I could say "help me". My friend came over, and slowly from top to bottom my body unfroze with my legs being last. It was a very frightening experience because I did not know if I will ever be able to move again, or if I will be a veggie for life. This was a partial conscious seizure. I quit Topomax cold turkey on the next day. PLEASE DO NOT TAKE THIS MEDICINE.
Posted 12/26/2011 6:10 AM (GMT 0)
I had pretty bad migraines and went to many specialists before one finally prescribed me topamax. I've been taking 25mg every night before bed for the past year and a half with no averse side effects. The drug works well, my migraines are mord manageable and I have less of them. The post before me advises against the drug but every body is different so until you try it you don't know how you'll react.
Posted 12/30/2011 5:50 AM (GMT 0)
I have been taking topamax twice a day @ 100 mg and I feel like I an losing my mind. I've had the tingling in the fingers and hands , told the doc she told me it was from positional placement. My memory is failing and I just can't take it. The doc us thinking about raising my dose. I've had the same headache for two plus month n they can't tell me anything other than migraines. Frogs helps but only allowed 6 per month. I can't take the pain........
Posted 12/31/2011 12:43 AM (GMT 0)
You are the first person that I found that is experiencing almost identical symptoms, however I have not yet reached that far. I am so scared. My doctor don't seem to know what he is doing. No one can tell me what is wrong other than migraines.... There has to be a cause.... However the topamax is driving me crazy I am forgetting. I can no longer drive. I am s supervisor for a 911 center and I was put on leave by my doc. Can't deal with the noises and lights much less trying to focus. I am glad I found you. Sorry we are going through this....

Agnieszka Macoch said...
I never had seizures before, ever. I was prescribed Topomax for migraines one year ago. The doctor told me to slowly keep increasing the dose up to the final one I was supposed to take. It took some time, but by the time I got to the dose that I was suppose to be on I was like a zombie. I experienced: tingling in hands, arms and legs and soda lost its sweet taste. This lasted for a few days and then new symptoms occurred:

I could not drive because I could not judge distance
I was walking in circles for no reason
I had unexplained feelings of OVERWHELMING fear
My brian was getting stuck and in my mind I kept repeating phrases like "What am I doing" "What am I doing" on and on
I could not perform my work (ex make employee schedule) because I would not understand how
I could not remember simple things like my ID to punch out from work (one I had used every day for 3 years)
LASTLY I had a couscous partial seizure. First my brain got stuck and did not understand simple tasks. Then I started (in my mind) to repeat phrases. Next, I realized that I cannot move my body. The only things that I was able to move were my eyes. It lasted about 10 minutes. I was not able to speak or call for help. However, by then my brain got unstuck and I could understand everything. My speak came back first. I called faintly "Alma" to my friend, but she did not hear me. Few minutes passed. I was like a stone statue with the exception of one of my fingers, which was seizing/ twitching continuously. Eventually, I could say "help me". My friend came over, and slowly from top to bottom my body unfroze with my legs being last. It was a very frightening experience because I did not know if I will ever be able to move again, or if I will be a veggie for life. This was a partial conscious seizure. I quit Topomax cold turkey on the next day. PLEASE DO NOT TAKE THIS MEDICINE.

cry cry
Posted 4/16/2012 6:45 PM (GMT 0)
My god. This entire thread has overwhelmed me. It's like reading my life story for the past 6 years.

I too took Topamax as a migraine preventative in November of 2005. It was prescribed by my new family doctor (not a neurologist) and he just got out of medical school. I wanted to use a preventative rather than pain killers so he checked his Palm Pilot (LOL!) and said, "Oh this one is supposed to be good." That moment changed my life forever. I started Topamax at 25mg day for 7 days then upped it to 50mg for only 2 days. The effects were catastrophic. Here we go.

Memory loss and very poor concentration (to this day I still ask myself, "What am I doing? What am I doing?")
Twitches in my right arm and fingers.
Tingling in my hands and feet
I couldn't feel the bubbles in soda pop at all. It was like drinking sugar water.
Aphasia (I could think certain words but I couldn't speak them.) Choosing an alternative word got me around that problem.
"Staring spells" (I could not move nor speak yet I was conscious.)

A doctor at the emergency room advised me to get off the drug immediately, and since I had only been taking it for 9 days there shouldn't be any withdrawal effects. Wrong.

The doctor thought I might have been having partial seizures so he put me on Carbamazepine. No help there. So since there was no known medical reason for the strange problems I was having you can guess what happened next. I was automatically labelled a psychiatric patient and that it was all in my mind. During the next year I saw a few psychiatrists who had varying opinions...one of which did acknowledge I was having some sort of odd seizures. I was prescribed Prozac and Effexor. One of the worst mistakes they made. Apparently SSRIs and SNRIs (antidepressants) will make seizures worse. The Prozac just made them more frequent for about a month. The Effexor made them violent, similar to grand mal seizures, and those results were permanent. Unfortunately I'm still conscious during these episodes so it's unpleasant top say the least.

Finally about a year later I saw another psychiatrist/psychopharmachologist/research scientist and with 5 minutes he diagnosed the problem: atypical seizure disorder cause by hypersensitivity to Topamax. He prescribed Lamictal, which had some very scary side effects, but I felt I had nothing to lose. Combined with 3mg/day of clonazepam, and after hitting 125mg/day of Lamictal, everything began to change. By the time I hit 250mg a day I was almost fine again. I was still having seizures from the strangest of triggers (flashing lights, "black" lights, certain sounds, colours,...) but life was so much better. After trying a few more meds to "top it off' and control them altogether I tried Keppra. Huge mistake. It made them so much worse that my meds we almost useless. Plus I had such a hypersensitivity to Lamictal (rashes and hives) that I couldn't increase my dose.

A year later my new family doctor decided to cut my Clonazepam as it isn't believed to be good to use it for such a long time. Oddly enough, cutting it by 1mg had very positive results. It seems now too much was bad and too little was bad. I have to take exactly 2mg/day. Next we tried combining it with Lyrica as I was more prone to having seizures in the evening. So long as I didn't take them at the same time it worked quite well. When used simultaneously it caused massive anxiety. Funny enough I am also hypersensitive to Lyrica. More than a 50mg dose will cause chronic constipation so it stays at 50.

And finally I found out that if I took ANY other type of "benzo" (like Valium and clonazepam - including a different make of clonazepam like a generic) it causes my usual brand to become less effective...permanently. It's happened three times now. So here I am again - reasonably functional during the day as long as I avoid the triggers -and more prone to seizures in the evening until bedtime. It's of further interest top know that using medicinal marijuana reduces my seizures to practically nil. The bad news is I don't have a license. The good news is some doctors in the UK have isolated several compounds in the plant that act as anti-consultants but do not make you high. So I just have to wait...oh...maybe 5 years before it becomes available.

So to anyone else out there who has experienced this type of reaction from Topamax and hit the same brick walls from the medical community as I did (i.e. "it's impossible" or 'you have a psychiatric disorder") do NOT let them convince you it's all in your head and take heart there ARE ways of controlling the damage done. For me it's a combination of Lamictal and Clonazepam (with a little Lyrica in the evening).

Cheers.

Post Edited (Hammond Man) : 4/16/2012 12:48:48 PM (GMT-6)

Posted 4/17/2012 2:42 AM (GMT 0)
Topamax is a medication used to TREAT seizures and migraines. Perhaps a visit to a neurologist is due :)
Posted 4/17/2012 3:27 AM (GMT 0)

SmurfyShadow said...
Topamax is a medication used to TREAT seizures and migraines. Perhaps a visit to a neurologist is due :)

Yup. And a Topamax "specialist" was very surprised to learn about the side effects I was a having on the the minimal dose (cognitive functions, tingling, no feeling of bubbles in soda.) And oh yes I was having chronic migraines for months before taking "The Tope". After nine days of it I didn't have a migraine for over six months. It's not supposed to work like that...but it did. It's not supposed to cause seizures...but it did. I know you were being a little smug...perhaps condescending with your suggestion but you'll be happy to know I do have an appointment for a week of video telemetry in several months.

Like I said to the others on this board who've been affected by this drug. Don't let anyone try to convince you otherwise.
Posted 4/17/2012 4:01 AM (GMT 0)
hi hammond man.like you,i was on topamax for years for my chronic migraines and headaches.i too have found since stopping this medication,that my headaches and migraines have eased a little bit.the seizure part is a bit scary.hope things improve for you.take care.
Posted 4/17/2012 8:19 PM (GMT 0)
Funny, I guess people have different experiences with medications. I have been on Topamax for 1 year now (only 25 mg per day). I have lost weight but I am fully functional. My gpa has actually gone up and am graduating in 3 days with my bachelors degree. It has never affected me at work either.
The only thing I notice with Topamax is that I can "forget" where i placed things, although I was also this way before being on Topamax.
Topamax has been a life saver for me. Prior to it, I was lying in bed all day with a migraine. I also never had a seizure on this medication.
Posted 4/17/2012 8:36 PM (GMT 0)
You're very fortunate. The psychopharmachologist said I have an idiopathic response to medications hence all of the whacky adverse effects. For some reason my brain doesn't react to quite a few meds (that we know of so far) the way they're supposed to. Yay.
Posted 4/18/2012 9:35 PM (GMT 0)
Those side effects go away. Specialist or not who says. I know that because, I was one of those people who was tested on it, before it became FDA approved. Before they put it out as a medication, they test it, even on people. I was one of those test people. I had those side effects, but it went away after a few months. Its just a temporary thing.
Posted 4/18/2012 10:02 PM (GMT 0)
"Those side effects go away. Specialist or not who says. I know that because, I was one of those people who was tested on it, before it became FDA approved. Before they put it out as a medication, they test it, even on people. I was one of those test people. I had those side effects, but it went away after a few months. Its just a temporary thing."

You're comparing the 487 people who were initially tested to the millions of those who've been using it since 1996? Do you actually believe all of the adverse effects were weeded out over 16 years ago? Specialist or not? That's extremely arrogant. They have more knowledge of the drug that you do...especially since their information was based on 10 years of experience.

For example: In March 4, 2011 the FDA Drug Safety Communication stated that topiramate use during pregnancy can cause fetal harm, including an increased risk for cleft lip and/or cleft palate. But this was 15 years later? So it can't be true! Can it?

Please don't try to "educate" me on the matter any more. Of course anyone else who chooses to read your posts and comment are welcome to do so.
Posted 4/18/2012 10:47 PM (GMT 0)
I know three people who use topiramate for epilepsy and migraine prevention. It works very well for the two who take it for seizure control. The other who uses it for migraine prevention gets great results but with it comes some rather inconvenient memory and concentration problems. They're very fortunate. Topiramate should be prescribed by neurologists only and the initial effects should be monitored closely by the patient and their doctor. Only three out of every four people can tolerate the drug. Those who cannot have to be taken off it immediately as per the chief of neurology at my local hospital (and I don't live in a small town!) tongue

To those who benefit from it - good for you. I'm sincerely glad your quality of life has improved. To those who have been unfortunate enough to be the rare one in millions who were not so lucky - you have my sympathy.
Posted 4/19/2012 4:19 AM (GMT 0)
I've been watching this thread for a few days now.  Just now I decided I had to finally post.

I think a certain line of questioning here has gone far enough.  No one here should deny anyone else's negative experience with a drug.  As long as something doesn't sound too far fetched, you take it at face value.. what choice do you have on the internet.  I would say a powerful anticonvulsant drug causing unpleasant side effects for a while is, actually, not unheard of.

Posted 4/19/2012 8:50 AM (GMT 0)
The symptoms that were mentioned of the tingling, numbness, etc- I had, and it went away. I can not give you my medical opinion, as it is against forum rules. Neither can you personally attack me Hammond Man, as it is against forum rules. I am telling you my PERSONAL experience on this, and am not in any shape or form arrogant, as you say. Some people do have adverse reactions to any medication, whether its over the counter (OTC) or prescription. For example, I can take OTC benedryl, but if I recieve it by IV I will quit breathing. I take morphine pills, no side effect. Give it in an IV and I hallucinate. It also seems you were on more than one medication at the time. Did you know medications can interact with each other? I am also on chemotherapy, and I HAVE to be screened for any morphine or oxycodone reaction every 3 months to make sure I dont have any adverse reactions with them. My first round of chemotherapy I became the 1 of 500, 000, 000 to develop the toxicity from it. My body became toxic, to where my organs were shutting down. I almost died, if it wasnt me for going on vacation and landing in the ER there. The doctor, bless is soul, took the time to listen to me, hear that I was an oncology patient, listen to how many times in and out of the hospital I been. He ran some bloodwork, and came back with an answer. So with what you Hammond, are describing it sounds like you had a toxic reaction/adverse reaction. And did you know even the greatest specialist in the entire earth can make mistakes? Get this - doctors, specialists are HUMAN not GOD. So don't go making us in the medical field look like some idiots who don't know everything. The odds are extremely RARE that you had to get those side effects, even MORE rare than my reaction. So you are looking at you were the one in over 5 million to get that reaction. Sorry that it happened to you, but I can not turn back time, change things, nor fix you. Now I know why we get to pick our patients.
Posted 4/19/2012 12:01 PM (GMT 0)
I'm sorry that things got a little heated here. It's just very frustrating. I was given the same opinion by almost a dozen doctors for 2 years before I was finally diagnosed. It's still very upsetting to hear someone deny its possibility as my life has been changed forever by this experience. I see I upset SmurfyShadow. It wasn't my intention. I just got very defensive. Thanks Batman55 for putting this in perspective. I'll just agree to disagree with SmurfyShadow and move on.

The reason I joined the forum was that I'd finally found someone who seems to have experienced a similar reaction that I did. I want to talk to them, hear their story, share mine and bring some kind of comfort to each other. There are only a precious few family members and friends who saw this happen and stand by me. It hasn't been easy.
Posted 4/19/2012 8:38 PM (GMT 0)
I was responding to a post ahead of you, then you personally attacked me. I did not see your post until after I replied. Hence why you got deffensive. I reply one post at a time... I read one message, reply, read the other message reply. And that is what you saw. I could of mixed the two together somehow.
If you would of read my last post.. you would see that I addressed you too. A neurologist doesn't really cover migraines, however, does cover seizures. A headache specialist, is the migraine doctor. Sometimes they cover both. I have seperate doctors. A neurologist for my neurological problems, and a headache specialist for migraines as my neurologist doesnt handle migraines.
Unfortunally you were the one to get the 1% reaction. Like, I was in my first round of chemotherapy. I am sorry for being snappy I've been on the edge for a month when my step mother, 2 aunts , uncle and grandmother all passed away. So I have been more moody, easier to tick off. Usually I have high patience. But if you do 5 funerals plus biological mother get 2 surgeries you would probably be moody too.
Posted 4/19/2012 10:55 PM (GMT 0)
This is almost funny (really.)

I was so upset by one of our previous exchanges that I chose to block your post. But when I get email notifications of replies to this thread I'll see yours because I haven't logged in yet...so the system doesn't know to block a user's posts! LOL! This actually happened to me years ago on IMDB. I chose to ignore someone but if I browsed a thread without logging in (and I only do so to post something) then I can see everything. It's a pretty flawed system.

Anyway, SmurfyShadow, I really am sorry about what happened here. Now I feel really bad. I'm kinda snappy for what's going on with me right now. Two of my generic meds were discontinued so I was switched over to the brand name versions. I should have started with those from day one. Now I'm going through withdrawal symptoms (including being a little snappy myself) and I'm having more seizures. As for your situation...I can't begin to express how sorry I am. My twin brother's roommate watched his mother, father and sister die from cancer all within 2 years so he's just been a nervous wreck for the past several years waiting for it to strike him.

Despite our disagreement I sincerely wish you the best. Suffering, whether emotional or physical, is still suffering. I'm sorry for your loss. Take care.
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