Had A Seizure After Coming Off Topamax

Barbara M Says:

I suffer from migraines-previously about 8 a month. My neurologist prescribed 100 mg Topamax, which cut the migraines back significantly to about 2 a month which can be treated with, in my case, Axert or Zomig. I began having really bad eye problems and other symptoms which prompted me to want to wean myself off. I was cut back to 50mg for a week and told to stop. On the 8th day off Topamax, I suffered a grand mal seizure and was taken my ambulance to the hopital. My neurologist will not suggest that it was the Topamax that caused the seizure. I have never had a seizure in my life and can't think of another cause for this. Has anyone else had this experience? I would really appreciate any insight, because I've been placed on another anti-seizure medication and told that by law I was not allowed to drive for 6 months. Thanks.

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Verwon Says:

Well going to 50 for a week, then nothing, was really not much of a taper, so I am not surprised you had a seizure. That was much to rapid and high dose of a taper schedule.

Even people who don't have epilepsy or other seizure disorders can suffer a seizure from a too abrupt removal from meds they are used to taking. It is a very common withdrawal problem, that is why most tapers to switch meds are done very slowly.

Even when I was briefly switched from Zoloft to Cymbalta, I had to do a very slow, month long taper. And a month or more is usually the average, for a taper to work, you should very slowly, over several weeks, drop the dosage of the one you were taking, and be upping the dosage of the new on your are adding. So for instance in the first week of my switch, we went to 75mgs Zoloft, because before that I was taking 100mgs, and added a 10mg Cymbalta, then the next week 50mgs of Zoloft and 20mgs Cymbalta, the third week was 25mgs Zoloft and 30mgs Cymbalta, the 4th week I had to break the 25mg Zoloft in half and we upped the Cymbalta to two 30mgs a day. Then the last week no more Zoloft at all, just the two doses of Cymbalta. And this should be a typical taper pattern when you switch meds.

Normally when you start Zoloft, they give you a start pack at your docs office or the pharmacy, so you start with one dose, and over several weeks go up to the most effective dose for you, so to stop, they gave me the same started package and we just reversed the order to take them.

Now, the reason your Neurologist will not say it was definitely the abrupt stop of the Topomax is because without extensive tests, it is hard for a doc to tell if you would have had the seizyre anyway or if it was definitely caused by withdrawal, since meds affect everyone differently, they can't just guess and assume that it was from stopping that med, though like I said, it is a very common reaction.

He has to protect his medical license and liability in such instances. He does not really want to be sued by you for making a treatment mistake or the drug company for making statements about them that could be construed as liable.

The not driving for 6 months is normal when someone has a seizure, your doc has to report it to your state driver's facility, that is a federal law and he has no choice in the matter. If you stay seizure free for the whole six months, then you will be able to drive again, and rather than having a seizure disorder, then it was more than likely caused by stopping the med, and you will not have to worry anymore. But the law does say that you have to be seizure free for a certain time period in order to safely drive.

However, it would benefit you if you could pinpoint it to that drug stoppage and prove it was only an isolated occurence, then you could send docs form to the state driver's division and get the suspension lifted.

If you doc isn't willing to talk about it, because he is so worried about the liability, I would recommend talking to a different doc who might be more honest and straight forward with you.

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Verwon Says:

Oh, I was just doing a little more research for you, as I am not very familiar with Topamax and have never used it, unfortunately my migraines are not caused by the typical issues so the meds used for migraines do not work for mine.

But anyway, I see that Topamax is actually an antiseizure med, that was it's orignal approved prescription usage, and as such, stopping it too fast is well known to cause seizures even if the person has never had a seizure causing medical condition.

This is warned about, for all of these types of meds, in the physicians and pharmaceutical prescribing information. Sometimes though, since doctors have so much trouble getting people to take meds they need, they do not tell you everything about the possible side effects, and they don't always list the warnings about stopping abruptly on the patient leaflet you get from your pharmacy.

Believe or not, to try to prevent people's fear of taking prescriptions, your pharmacists and doctors are not allowed to tell you everything about a med and its side effects unless you specifically ask! They are not allowed to volunteer the information.

I was on Gabapentin (Neurontin) for awhile, which is also a seizure med that has been proven to help with certain types of nerve pain, so my doc decided to try it and see if it would help with my pain from my spinal condition as well, it didn't, but right on the patient info pages and monographs online, I read warnings about how stopping it too fast could cause seizures.

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Verwon Says:

A-HA! Just found the info I was looking for to show you.

Topamax Info Click Here

Now, right from this page:

In patients with or without a history of seizures or epilepsy, antiepileptic drugs, including Topamax, should be gradually withdrawn to minimise the potential for seizures or increased seizure frequency. In clinical trials, daily dosages were decreased in weekly intervals by 50-100 mg in adults with epilepsy and by 25-50 mg in adults receiving Topamax at doses up to 100 mg/day for migraine prophylaxis. In clinical trials of children, Topamax was gradually withdrawn over a 2-8 week period. In situations where rapid withdrawal of Topamax is medically required, appropriate monitoring is recommended.

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jesysgrl Says:

Your neurologist knows that's exactly why you had a seizure. A similar thing happened to my brother in law. He was prescribed Ambien another seizure medication (which is also used for pain and anxiety) while he was in the hospital. When they discharged him, they completely took him off this drug (after giving it to him for 2 weeks).
A week later he had his first seizure. He now has seizures on a regular basis. It has been going on now for over a year. He had never had one in his life before. He has a law suit against the hospital which I feel is reasonable at this point.

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ksw Says:

Ambien is a sleep medication, not for anxiety or pain....what are you talking about? And sleep medications don't usually need to be weaned off of.....good luck in a lawsuit...

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Sue Says:

I just came off Topomax after 6-7 years and had 2 Grand Mal seizures!! I am so mad that I stayed on it for so long. I weaned off of it over a 3 month + time frame. I was on 200 mg/ day. Not sure that it genuinely really helped me and I could vomit at how much I spent on the crap.

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Dr Mom Says:

I had been prescribed Topamax for new exercise induced migraines that started about a year ago (I've had migraines my whole life but never tied to exercise, then out of the blue I got a 3 day migraine that my MAX_ALT didn't help EVERY time I exercised). I took it for about 4 months working up from 25 mg to 75 mg. It never helped the exercise migraines at all so I was somewhat half-assed about taking it. Then I had a new doctor prescribe Indomethocine and so I just stopped taking the Topamax. About 3 or so weeks after stopping, I was driving when suddenly I felt like I couldn't maintain consciousness and as soon as I pulled over I had myoclonic jerking and repeated altered consciousness- I say altered because I was lucid just about the whole time but I would lose control of my muscles and be unable to hold my head up or my eyes open; at the same time my arms would suddenly jerk on and off. This lasted for about an hour. Although the "loss of consciousness" stopped after an hour the jerking dissipated over the 3 days I was in the hospital. All my tests came back completely normal- absolutely no issues in EEG, MRI, CT Scan- nothing! Now, one month later, I am experiencing feelings of fainting when I lecture (I teach) and intermittent feelings of profound exhaustion- not sleepiness just physical exhaustion. Neurologists have no idea what is going on and don't think I'm having 'real' seizures but they have no other thoughts. My questions are:
1. Could the stopping of Topamax result in this type of sudden episode even 3- weeks after stopping cold turkey?
2. Why am I still having symptoms? Could these 'seizures' from the stopping be permanent or ongoing? Is there any evidence for this?
3. Am I all alone? Has anyone else had any similar experience? My neck still gets that 'chilly willy' feeling several times a day and will roll/jerk forward and my head just doesn't feel right on and off during the day. But the weakness and fatigue are the real issues now. It is so profound that it literally feels like I have weights on my eyes and I've found myself listening to people talk while closing my eyes because the effort to hold them open is too much.
4. Again, all my tests come back completely normal- I'm the healthiest 'sick' person I know. Anyone have any thoughts on an alternate diagnosis?

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MedicMan Says:

I am curious if you have found out anything else. I too had a very similar situation about three years ago and the same symptoms that you described still haunt me from time to time. I have been told that I'm having "panic attacks". I know I'm not crazy and something else is going on but I too have gotten no answers. I did not take topamax during this period so I'm pretty sure that's not the issue. All my test like yours were negative. I also did extensive cardiac and thyroid testified which also came back negative. I described the exact symptoms to the doctor minus the shacking in the hands but the sudden fatigue is terrible..

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Lisa Says:

Have you ever found out about the not feeling eight in your head or wea knees and fatigue? I am recently dealing with this and getting worried. Along with the eye issue of the pain and vision worsening. I came on to find d put how to start to wean off.

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GraceLynn Says:

Re: Dr Mom (# 7) Expand Referenced Message

Did you ever get a diagnosis, Dr. Mom? I had exercise induced migraines begin in February that are still happening now in October & my neurologist told me to go "cold turkey" off 100 mg topamax.

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