Going off of Topamax?

It's comforting to read that I'm not the only one experiencing severe problems from taking this drug. I started out two years ago on 75mg because of chronic migraines (~15/month); migraines that unfortunately also trigger facial myokymia. The 75mg Topamax most certainly decreased the frequency and severity of the migraines and almost completely got rid of the facial myokymia, but since my headaches/myokymia had not completely gone away, the neurologist decided to increase my dose to 100mg, then later to 125mg. So, two years into this the facial myokymia is completely gone, but the headaches occur at the exact same frequency as when I was on the 75mg dosage. Now onto the horrible side effects.

Over the course of two years, due to the increasing memory loss, lack of being able to concentrate, being lost in a fog, lack of being able to do simple (and complex) tasks at work that I had been doing for years, this drug has taken so much away from me, so much of who I am, who I was proud to be. I always liked being an achiever, being on top of things at work, being able to do things for other people, but this drug and the hope that it would cure me of these wretched headaches and that I could still function fairly normally is a complete falsehood. I was ramped up to 125mg a few months ago and for about a month now I can honestly say that I feel like I have been going crazy. I was just last Friday ramped back down to 100 mg, but let me describe some of my symptoms. Incredibly slow thinking that has decreased my reaction time. I am 45 years old and have never had an accident. I had one two weeks ago in my own driveway. I got startled by the banging of a garbage truck behind me and was so foggy in my head and so slow to react to my vehicle backing out while this was happening that I ran into my own fence next to the driveway. Two, I have had to demote myself at work. I have a high level job that requires complex thinking and I can no longer do the job. I was continuously failing and had to tell my boss that I could no longer do it and why. Fortunately, he was understanding and has reallocated me to another position for now. Third, and possibly most disturbing, I sometimes can't tell reality from imagination. For instance, yesterday, I told my husband that I put the laptop in the dining room on the side chair. When I woke up this morning, it wasn't there. I was completely confused. In my mind, I had put the laptop in the dining room on the side chair, but in reality I had not. I had projected something in my mind into reality. It never actually happened. Fourth, there are huge holes in my memory. People tell me I have done things. I have no memory of it.

My advice to anyone who has recently been put on this drug is that if you are experiencing even the slightest difference in self--you don't think you are quite up to par to the way you were before taking this drug, then you probably either need to go off of it or at least mention the problems to your doctor and make a judgement from there. I did not mention the side effect to my doctor until recently. I found out what the side effects were a few months after I began taking the drug and stupidly thought I could work around them because I so badly wanted to be free from my headache problems. Unfortunately, the side effects went from manageable to rather severe in a fairly short period of time.

Just as an addendum, I suppose I never went through the anxiety that people have described in their posts because I have been on panic attack medication for a couple years now. I have read quite a lot concerning panic attacks, and certain medications can trigger panic attacks in people. I'm not an M.D., but it sounds from these posts as if Topamax is one of those medications. If you still experience panic attacks after going off Topamax, you need to get a doctor's help, because I suspect that Topamax was the trigger for the attacks.......and depending on your symptoms, panic attacks may be unsafe and debilitating.

Thanks to everyone who has shared their experiences on this forum. It helps to know that going off this drug may be a return to sanity.

Yeah, it seems almost everyone has a similar experience with Topamax as you had. Why do doctors even prescribe this for migraine patients and why does it seem to be a "front-runner" in their minds for helping people? Does anyone here know someone who was able to stay on this medication longterm and it helped their migraines?

Hey,
Since starting Topromax I stopped working straight away, have now lost my job, was unsafe to look after myself, had to move out of my flat in London and move back into my parents, not socialised and stopped taking the tube by myself...Also had 3 severe episodes lasting 3-7days of wanting to kill myself...

Bearing in mind I am a super independent, super active, super sociable individual, I definitely completely lost my independence on the 4 months I took this, even at a low dose of 50mg...
I am off this drug by next week. But although It does reduce the mega intense migraines, the less severe ones become more unbearable with the emotional and cognitive mess up this causes, if that makes sense, and the ability to cope with the pain 24 hours a day becomes impossible.

My therapist explained it as - taking away your resources to be away to manage the pain.

it has its uses, but isn't for everyone i guess - like all drugs it has a whole array of side effects and affects everyone so differently you wouldn't know until you try. I'm glad it stopped my 3 1/2 week episode of highest level migraine and brought that down but not good for me long term.

Not every migraine patient that has been on Topamax has these horrible side effects!

I have been on Topamax 200 mg for about a year and a half or so off and on! I was started on 25 mg n gradually increase until I got to 100 mg! After the third week I was forgetting simple words, became dislexic, I drove to the wrong house 3 times. I lost my 2 ct diamand engagement ring (i would take it off every night n put it in its box n put it on the morning), i swear i put it in the box but i have no idea where it is, n we looked every where! I was slow with my thoughts or speech, I'm a bit of a smart butt n would have quick come backs, i know longer can! Every thing in my house hold is the "thingy" n i describe it! I thought i had a tumor!

I work as a medical assistant for a big health organization. I work in cardiology, but I would also work in Urgent Care for some OT hours. At work I would forget to how to fax, log on to my computer, our patients charts are accessed thru computer, i would forget how to enter urine, EkG, throat cultures into the chart, when I was once very capable and great at my job! I finally explained all these symptoms to one of the docs in urgent care n he said it was the topamax!! And the worst effect is it changed my taste in carbonated drinks n some foods! Coca cola n beer taste like metal! The sunny side i didnt have a tumor (lol) i did lose about 15 pounds!!

I continued to take it as it was preventing my migraines, i just had to really pay more attention, i stopped working in urgent care! Cardiology is much slower paced but i still found little mistakes i was doing! Not with patient care but in my paper work, I talked to my Pcp and she took me off work as of 5/2012 til now! I was scared i would make a major mistake at work either with a patient or anything else! At work we clock in thru work phones n i was clicking in late or not clocking in, which we get in trouble for! Luckily I have a union and FMLA!

Later on my PCP thought hey lets treat you like ADHD/ADD, she prescribed concerta. Heck i was wired no sleep for like 4 days. I got huge migraine so she stopped it and tried Adderall, which i can sleep with it and my cocentration n memory loss has improved by 40% i am in a very low dose! Hopefully i can return to my job!

I have tried many, many preventatives, botox x 3! Botox worked for 1 year n stopped! Topamax works for me as far as fewer migraines a month but my body gets used to it n i stop it for a while! N go back! I would ask most patients from my work that were taking topamax n if they too experienced some of side effects i did, some would say yes but were different then mine, others said no they had no side effects at all! Some people's bodies are just different and topamax does work for some without any side effects! My friend takes 150 mg of topamax n she can enjoy a coke and a beer!!

Yeah it's very common to have these side effects - but some people seem to have a whole host of serious side effects while others have less serious. And I think it must depend on what you do for a living as well in terms of how much you really notice the loss of concentration, memory, etc.

I think it's a simple answer to why doctors prescribe it - although I only lasted 7 months on it I experienced a massive reduction in migraine frequency and severity. It was like I got my life back. It works so well for some people that they must figure heck let's give this a try. However, I eventually had to decide to come off it because I needed to be able to think to write my thesis. I don't regret being on it though because since I was on it my migraines have not returned to their original frequency which had been more days per month with migraine than without - maybe 6 or 7 x 3 day migraines per month and extremely trigger happy so that any light would kick one off.

I hope you find your mind and body returned to health when you get off the drugs. It is a hell of a relief to find that you do return to normal although it did take me a couple of months to feel my mind was back - I think I got out of the habit of thinking!