Can Topamax be making me crazy?

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Re: Can Topamax be making me crazy?

Post  CluelessKitty on Mon Jan 17, 2011 9:15 pm

In this case 314 has already been turned away from the hospital ER as a "drug seeker", making that option difficult too.

She wasn't supposed to go to ER to ask for any drugs, though, but seeing how her Dr was unavailable she was supposed to seek help with the hallucinations and other s/e she was having on T
and ask what is she to do with all that
and eventually ask for directions how to get off this.

Definitely I would go to ER immediately for directions re:Topamax if I got a seizure..

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re:topamax

Post  charmed quark on Tue Jan 18, 2011 9:07 am

I totally agree. She should have been seen immediately by her doctor or sent to the ER. These are symptoms of serious depersonalization or something that demand immediate attention. And a seizure in an adult is a medical emergency that needs to be looked into right away.

My experience with Topamax wasn't as bad. I had been on a much lower dose for about a week. I'm driving to the store with my wife when I come up to an intersection. I'm looking at the stop light trying to remember what it means when my wife yells "Stop!" Lucky she was with me because I nearly ran the stop light at a busy intersection as I was trying to remember what it was. Scared the bejeezus outof me and I called my doctor right away. The doctor had me titrate down over a week.

Amazingly, I've had two neurologists trying to get me to use it again. Ain't no way that's going to happen.

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Re: Can Topamax be making me crazy?

Post  sherri b on Tue Jan 18, 2011 3:26 pm

My neuro had me try it 3 times! Finally I said no more! It was bad for me too.
I was so disoriented, couldn't remember things, limbs going numb and brain going NUMB!

No wonder the elderly get so confused, can you imagine?
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Re: Can Topamax be making me crazy?

Post  Annika on Tue Jan 18, 2011 4:33 pm

Stopping Topamax abruptly can cause seizures even in people who have never had one before as it looks like happened here. The problem now is that the seizures may never stop leaving the need for some type of antiseizure medication for life.

NEVER stop using Topamax abruptly. If you did and nothing happened, you got lucky. Don't tell people to stop the Topamax RIGHT NOW because of the evil drug.

Fine, you had a bad experience on Topamax. You don't think anyone should try Topamax and if there are side effects then the drug should no longer be tolerated. You stopped taking it after a few days or weeks and nothing happened to you. This was 100mg ... not a beginner dosage. Way too high to just stop taking. I know that everyone means well, but this medication isn't anything to mess around with regardless of the experience (mine was very positive.) This isn't the first time that stopping Topamax abruptly has been suggested on this forum.

It should never, ever have been prescribed at this initial dosage. I really do think that this doctor needs reporting to someone. 314, I'm very sorry that this happened to you. Have you reported the seizure to anyone yet?

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Re: Can Topamax be making me crazy?

Post  Migrainegirl on Tue Jan 18, 2011 9:24 pm

Stop taking topiramate and call your doctor at once if you have any of these serious side effects:

sudden vision loss, pain around or behind your eyes;
dry mouth, increased thirst, confusion, drowsiness, decreased sweating, increased body temperature, and hot, dry skin,
nausea, vomiting, increased urination, muscle pain or weakness, fast heart rate, feeling light-headed, fainting, or seizure (convulsions); or
severe pain in your side or lower back, painful or difficult urination.

314 had significant confusion as well as psychosis and hallucinations. These are serious side effects and quite life threatening. There is a significant increase in suicides with Topomax. See http://professionals.epilepsy.com/medications/p_topamax_seriousside.html for a discussion of psychiatric side effects.

I still think 314 did the right thing. The doctor should have called back. Also he/she should not have started on such a high dose which increases the risk of psychosis and other side effects.

Given the choice of
(1)staying on a drug causing such frightening hallucinations while waiting for a non responsive doctor to call back after the weekend was over, or maybe not at all,
(2) going go the ER that already told 314 not to come back with a drug abuse suspicion and reporting hallucinations which would likely get one thrown in detox or a psych ward, not helpful,
Or (3) using your best judgement and stopping

Not a great set of choices to be left with. Yes I know the importance of gradual weening. I still would not keep taking anything causing that level of problem. Hard to say whether the seizure was from the drug itself or from stopping it. Seems to be more of an issue for those with underlying epilepsy as the reason for the Topomax.
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Re: Can Topamax be making me crazy?

Post  CluelessKitty on Tue Jan 18, 2011 9:58 pm

Migraine girl, it's so simple- you are not the doctor, and just because you were advised to go off Topamax at once does not mean everybody else with a bad experience should, too.
What if 314 ended up with, say, a series of seizures because of that?

or whatever.

The right thing to do was to go to ER no matter what - again, she wasn't going to ask for drugs again but for different reason entirely PLUS she's had a seizure!

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Re: Can Topamax be making me crazy?

Post  Migrainegirl on Tue Jan 18, 2011 10:03 pm

We can agree to disagree.
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Re: Can Topamax be making me crazy?

Post  314 on Sat Jan 22, 2011 7:20 am

Hello again. Took a break to recover. I did get a call back from the original doctor telling me how to wean off. A bit late on that though, as I'd already stopped.

I fully agree stopping like I did was a stupid move. In my own defense I was not able to think clearly when I decided on stopping, and my choice to stop was mostly driven by fear. I did what I thought would stop the hallucinations (which were terrifying me). In that respect it did work.

I did not end up going to the ER for the seizure. That was an option, as I moved back into my own apartment (I was staying with my parents for a few weeks), and I'm in a different area with a different hospital. I was scared however that if I mentioned hallucinations I'd be put in psych, which obviously wouldn't have been helpful.

With my seizure I lost consciousness (though I got an aura type thing first... very strange feeling), knocked down the folding table by my bed, and bit my tongue pretty hard. I woke up very confused (didn't know when or where I was) and exhausted and winded (like I'd forgotten to breathe). I slept for a solid twelve hours after it.
While I haven't had another seizure like that, I'm afraid I may have caused something more major than a few days bad withdrawal. I've been off T long enough now, I shouldn't still be having problems from it. But I have a myoclonic like twitch on my left side. It's like when you start to fall asleep and then an arm or leg jerks. Only it's persistent, it continues all day, it wasn't there before, and my shoulder has been twitching so much that the muscle is overworked and painful.
I'm usually a bit off-balance and dizzy, but since stopping the T I've taken that to a whole new level. It's like added to my usual dizziness my legs occasionally refuse to cooperate and then I fall (plus one leg twitches really hard!). I'm walking with a cane now, which is helping me to maintain my balance and catch myself before I fall. Twice I've been so bad I couldn't walk home, and a friend had to take my arm and walk me to keep me on my feet.

New neuro is great, and listens to what I say and gave me an after-hours number to call if something comes up. She wants an EEG obviously (as well as an MRI and a ton of blood work). She also started me on gabapentin, for migraine prevention (though I read it's an anti-convulsant as well). She started me on 300mg, and then I can go up slowly from there (in fact we're going even slower than the recommended slowness). I've been on it a few days now. I've noticed my anxiety and my dizziness are worse after I take it, but not so much that I can't deal with it. I read up on it before I began taking it, and I know that what happened with the T shouldn't happen with this one. I've also learned my lesson on stopping meds cold turkey. Ugh.

I do have the next issue to deal with, which is having panic disorder and being terrified of tests. But I'll start a separate conversation for that since it's not really related to Topamax making me crazy.
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Re: Can Topamax be making me crazy?

Post  sherri b on Sat Jan 22, 2011 8:22 am

Dear 314,

Please be careful with this new med. and don't assume it won't affect you like the topamax did... especially if it is an anti seizure med. That dose sounds high to me, but what ever.

And remember we are all different, and the drugs work differently on all of us.

Wow, you have really been through it. Hope you and your neuro can get to the bottom of this.

I can't tolerate most of the phamac. drugs, therefore an not on any preventative, although I did have a bad experience a couple weeks ago, I felt I was possibly have some sort of breakdown, I felt I was going to "go inside myself" it scared me, I had to talk myself out of it, like I was gonna turn inside out or something. My neuro put me on Klonopin. It not only helped the anxiety and what ever was happening to me, but it has helped the headaches to not be so severe. I am still getting them almost everyday, but they are much easier to treat now.

My neuro said the incident could have been from the constant headpain, the lots of migrainers expeirience that.

Praying you find relief and get better soon,
Sherri B!
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Re: Can Topamax be making me crazy?

Post  314 on Sat Jan 22, 2011 8:36 am

I checked the prescribing information before I started taking the drugs this time. 300mg sounded high to me as well, so I made sure to look into it first.
It says for people over 12: "The effective dose of Neurontin is 900 to 1800 mg/day and given in
divided doses (three times a day) using 300 or 400 mg capsules, or 600 or 800 mg tablets. The
starting dose is 300 mg three times a day."
So this time I'm actually starting lower than the starting dose. Which is good. Smile

I said the same things shouldn't happen with this and the Topamax, but you're right they could. Psychosis and hallucination are listed as "infrequent" in the prescribing information. Hopefully it won't happen again. At least this time if something weird happens I've got an after hours number to call.





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Re: Can Topamax be making me crazy?

Post  Migrainegirl on Sat Jan 22, 2011 10:20 pm

Really glad to hear you have a new nuero who is more accessible and responsive. I hope the new medication works better for you.
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Re: Can Topamax be making me crazy?

Post  sherri b on Sun Jan 23, 2011 3:54 pm

Yea, new neuro is a good thing, and to be available to you is a plus... hope it works out for you!
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Re: Can Topamax be making me crazy?

Post  milo on Sun Jan 23, 2011 7:28 pm

I went on topamax in November in a desperate attempt to get my head under control. I started at 25mg a day and intended to do a very, very slow increase.

I managed fairly ok on it, but with huge stomach upset and a complete loss of appetite. I felt like crap on it but was desperate to see if it could help me.

I moved up to 50mg a day after I had a serious skiing accident in the first week of December. I was unable to work due to a blown out knee so I figured I would allow myself to go up quicker then I had planned. I made it to 100mg in a split dose, but I was not tolerating it well at all. I woke up with double vision several days in a row and it would not go away.

I had a change in my headaches though, so I was crazy enough to keep on it. I couldn't tolerate the 100mg so I tried to pop down to 75mg. I had a tonne of anxiety, which I don't normally have.

Then one day I was driving in my car and I suddenly started thinking I should kill myself. Very random, and not where my mindset actually is. I took stock of where I was at with a few close friends and we determined that the topamax had definately messed up my mood and that I was no longer enjoying any of the things that I normally did. I started my slow wean that day, with the help of my pharmacist and several medical professionals on my list of friends. It took me a long while to get off even though I was allowed to reduce every third day. I did it more like every five to seven days.

I also had some pretty funky thoughts on it, and even tried to describe them to some friends....they laughed at me and told me it was the medication talking. Something about topamax being a forcefield for pain and some bizarre explanation about that.

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Re: Can Topamax be making me crazy?

Post  Matilda on Fri Feb 11, 2011 3:02 am

My mind was fine on 75mg of Topomax, but if my dose went above 150mg I hallucinated and 'Freaked Out' a lot.

I convinced myself that there was a person living in my roof space and I never slept.

I also thought that Aliens were trying to contact me during the night.

I am normally a very sane person, so this was extremely scary for me.

I can definately understand how scared you must have felt.

I hope that you find a medication that works for you.

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Re: Can Topamax be making me crazy?

Post  sherri b on Fri Feb 11, 2011 5:34 am

Bobbi-Jean,

How awful! We must keep in mind (no punt intended) when we start new meds what can possibly happen. I always seem to forget. And when I start feeling weird about things, I have to try to think of what might be causing it. Sometimes it takes me a long time. For instance, I was on lisinpril as a preventative, and wow, after about a month and a half, I began getting painful headaches everyday, they were not like migraines, but I had bad headpain 24/7! I finally quit taking them and the headache went away eventually.

Thanks for the post, and so glad you figured it out, geez side affects like you had could possibly make you crazy and a victim of being admitted to a sike ward!
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Re: Can Topamax be making me crazy?

Post  Matilda on Fri Feb 11, 2011 9:17 pm

Even though I had such a bad reaction to a high-ish dose of Topomax I would be hesitant to tell other people
to stay away from it.

Out of the approximate 20 medications I have tried it was one of the most effective.

If you don't risk trying a new medication, then you never gain any insight.
It's a process of deciding whether the migraines or the side effects are worse.
In my case, Hallucinations and kidney stones were worse than migraines, so I stopped taking the Topomax (gradually, of course).

I am glad I've tried all of the meds I have...despite the side effects (none of which have been permenant),
as I know that I have tried every possible avenue.

On the other hand, I can understand how people don't want to put themselves through more pain and suffering on top
of the migraines, having to withdraw by dividing tablets or counting little beads to reduce withdrawal symptoms.
It is definatley a long drawn-out process.


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Re: Can Topamax be making me crazy?

Post  sherri b on Sat Feb 12, 2011 6:02 am

My point wasn't to tell people to stay away from it, I just wanted to emphasize on being senisitive to yourself when you do start a new drug. Most of them, Like Topamax for instance didn't just happen with me, it took weeks, in a very suttle way. I was driving almost an hour to work... and it was getting bad.

The problem was,, I couldn't figure out what was wrong with me for a long time, then a light went on,, it was the Topamax....

That's all I am trying to say. hope I said it better this time,

And,,, so if it works for some, great, just didn't happen for me.
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I recognize

Post  annuder username on Sat Feb 04, 2012 5:40 pm

Hi,

I just registered with this site to respond to this thread. I know it's an old thread. I don't get migraines, used to have epilepsy. I just need to share and warn.

When topamax first came out the doctor put me on 900 mg and I lost my mind and went psychotic. At the last 100 mg increase I would start to grey out initially after each 500 mg dose and have uncontrollable muscle spasms where I couldn't stand for a while. Hallucinations, audio and visual, psychotic paranoid ideation, suicidal ideation, attempted suicide. Along with all the other side effects. Cry every day, extreme mood swings like rapid cycling bipolar, laugh until sick, get angry, even got violent. Was paranoid and clenched up, lost insight, couldn't understand what was happening except that I was insane and that I had to take my poison pills every day, kind of a diffuse negative haze. Didn't tell doctor, had trouble organizing thoughts anyway.

Couldn't hold a job, remember to use birth control consistently, etc, usual parade of horribles. Ended up homeless with kids for a few years with an abuser. Then got off the drug and my mind went crystal clear and insight came flooding back and I cringed in horror and rolled up my sleeves and set to work fixing my life. Still not done. Be careful on this drug. Be very careful. I did have two children on it, healthy and no defects.

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i have hade the same thing!!

Post  drewster93 on Fri Jan 17, 2014 9:32 am

im 20 years old suffer with migranes and 2 weeks ago I thought I was dieing I was convinced of it I was on 100 mg of topermate
I called my mom and thought I was going crazy come to find out it was the topermate I went too my primary care dr not my pain dr she said the medicine is very dangerous I even went too the hospital convinced that I was dieing scared the crap outta me they moved me down too 50mg and im doing much better and then there gonna move me down too 25 then get off the medicine its just nice too know im not the only one who suffered this i even had one seizure due too trying too get off it myself. get help from your dr 314 and get off the medicine its not safe heck even hydrocone is safer then that or a muscle relaxer DONT TRUST PAIN DRS!!! they are just in the business too make money. email me and let me know how your doing i know its scary just got too you primary care not a pain dr!!

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