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Can Topamax be making me crazy?

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Post  314 Thu Jan 13, 2011 10:11 am

I've been on Topamax for about a week now. I'm on 100mg.

I've been getting increasingly confused and having memory problems.I forget words. I know that stuff is pretty normal for Topamax, and honestly it doesn't bother me that much.

Last two days things have gotten exponentially crazier. I woke up today and was convinced I'd left the space-time continuum. I couldn't figure out when or where I was. I didn't know I was in my mom's house, or that I was in a bed, or what month or year it was or where my parents were. My service dog growled at me to stay in bed and rang my mom on the emergency phone, and after talking to her for a while I managed to sort out who/where/what/when was going on. That was terrifying.
I've had the just woke up sorta still dreaming thing happen before, and this wasn't it. I continued to be confused about my whereabout and the whole space-time issue for a good half-hour after waking up. I recognized about half of what was going on (one of my dogs I recognized, the other I did not, I knew I was talking to my mom on a phone but did not recognize it as my phone etc). It was strange and scary.

Also, I'm hallucinating. Just little stuff, like the keys on my phone being upside down and the numbers on my syringes being backwards.

I'm a little freaked that I'm having some sort of a psychotic break. I have a psych appointment on Friday and a neuro appointment on wednesday to have this looked into. I'm not stressed much right now, and I don't have any disorder with psychotic features so the topamax is the only thing I can think of that could cause this.

Has anyone heard of this happening? I'm pretty sure it's the meds, as like I said my psych disorders (Panic Disorder mostly) do not have psychotic features to them. I am very wary of saying something to the psych though, for fear that they won't recognize that it could be the topamax and they'll just assume I am having a psychotic break.

Any experiences or opinions on this?
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Post  Jangel Thu Jan 13, 2011 11:07 am

You need to contact your Dr. right away. 100mg is way too high of a dosage to start out with. You need to be titrated up on Topamax very slowly.

The usual amount to start with is 15-25mg, and upping another 15-25mg at the most weekly (for me I waited a month or two in between increases!)

It is a VERY powerful drug and 100mg is WAY too much starting cold.

Please contact your Dr today. It was really irresponsible for him/her to not have to titrate up more slowly.

Hang in there and know that once you cut way down in dosage and titrate up properly, you should be okay.

Please take care.
Jane cat
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Post  314 Thu Jan 13, 2011 11:34 am

I checked the prescribing information. It says "Psychiatric Disorders: Frequent: impotence, hallucination, psychosis..."

FREQUENT??? Psychosis is frequent and no one even mentions this to me?!? I'm so mad!

I called and left a message to ask what to do.

I'm emailing my psych now to see if he's got any suggestions besides OMG HOSPITAL. Because if he says that I will just ignore him.


Last edited by 314 on Thu Jan 13, 2011 2:52 pm; edited 1 time in total
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Post  Norma Thu Jan 13, 2011 1:38 pm

I had heard so much good about Topamax that I tried to increase my dose more quickly than advised. I became angry and paranoid fairly quickly. I also found myself crying over every little thing, which was completely out of character. There were also physical side effects, including nausea, diarrhea and intermenstrual bleeding. I stayed on it for about 6 weeks, in spite of these symptoms. I did not see any significant benefit, and finally quit taking it after my spouse questioned my sanity. That was about 10 years ago. I keep reading glowing reports about all the wonderful results people are getting, for headache relief, weight loss, and all kinds of other things. Maybe some people are just extra sensitive to it, but I found it quite frightening.

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Post  Paradox Thu Jan 13, 2011 2:21 pm

Yes, I went psychotic on Topamax.
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Post  lentils Thu Jan 13, 2011 2:28 pm

short answer, yes. Especially if you haven't felt like this before and can't attribute it to anything else.

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Post  Migrainegirl Thu Jan 13, 2011 4:00 pm

Those are serious side effects and you need to discontinue asap.
Tell your doctors office "I am having serious side effects including hallucinations and severe disorientation.". If they do not get back to you immediately you need a new doctor. You also need to stop taking before something serious happens or you become so effected you don't realize your own behavior is abnormal and you do something crazy or dangerous.

One lady on here kept going with a medication that had bad side effects causing depression and ended up in the hospital with severe renal failure. I've ended up with lasting side effects from medications my doctor tried to keep me on, even though it was not working. Topomax has been a problem for many people on here, including me.
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Post  pen Thu Jan 13, 2011 4:50 pm

Dr Robbins just posted this on Facebook regarding Topiramate.
I was prescribed it and not even asked about any Kidney problems.
I didnt take it. Just as well, I have only one functional kidney and have had stones and nephritis.Evil or Very Mad

http://headachedrugs.com/column/kidney-stones-in-topiramate-users/#utm_source=feed&utm_medium=feed&utm_campaign=feed

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Post  sherri b Thu Jan 13, 2011 5:51 pm

I agree with Jane!

I also had alot of trouble on it, my neuro made me try it 3 different times!

I think it mess's with the brain way to much. I hated how it made me feel. So disoriented, and numb, took me a while to figure it out. Thought I was just starting to get stupid from all the triptans! Rolling Eyes
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Post  314 Fri Jan 14, 2011 3:58 pm

I stopped taking the Topamax tonight. I saw something really terrifying... so I seriously cannot bring myself to take the pills I know are causing it (psych agrees with me that pills are the cause).
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Post  Brenda Sat Jan 15, 2011 7:28 am

It's true, Pen. The neuro I visited took me off of Topamax as soon as she heard that I had a kidney stone. She said there was no way anyone with kidney stones or problems should take it.

And yes, it can make you kinda crazy. I didn't have hallucinations, but I had SEVERE memory problems. I was driving and had no idea why I left the house. Couldn't think of every day words like computer, paper towel, etc.
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Post  pen Sat Jan 15, 2011 7:43 am

Thanks Brenda, what concerns me is that it was originally suggested by my GP and she has all my records there.
But I didnt know the kidney implications so it was surely up to her to ask me...
I checked it out and didnt fill the prescription.
Our lives really are in our own hands....we have to be so careful who we trust it seems.

P

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Post  314 Sat Jan 15, 2011 8:27 pm

I got really scared the other night, now I'm having increasingly complex hallucinations.

I stopped the Topamax yesterday.

Any ideas on how long until the stuff gets out of my system of the side effects wear off?
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Post  Migrainegirl Sat Jan 15, 2011 10:14 pm

Hang in there. It could take a couple of days if you were on it a week. More if you were on it longer. Did your doctor ever get back to you?
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Post  314 Sat Jan 15, 2011 10:44 pm

No, they were closed Fri-Sun. I'll call again Monday.
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Post  314 Mon Jan 17, 2011 12:36 am

No hallucinations today!

I had a seizure this morning though. Sad That was weird.
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Post  Brenda Mon Jan 17, 2011 10:58 am

I think you're not supposed to stop Topamax cold turkey. I went off of it gradually.
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Post  Migrainegirl Mon Jan 17, 2011 3:56 pm

Not getting back to a patient who leaves a message about serious side effects is very disturbing.
Are you still having problems? You may want to find a new nuero.
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Post  314 Mon Jan 17, 2011 4:08 pm

Wednesday appt is with a new neuro. I didn't like the last one.
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Post  sherri b Mon Jan 17, 2011 4:16 pm

I agree with Brenda, you have to be careful getting off stuff!!!
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Post  CluelessKitty Mon Jan 17, 2011 4:45 pm

See, that is why it is never a good idea to medicate YOURSELF.

Just because you logged onto a forum where somebody else did or is taking the same medication,
it does not mean you can start doing as you see fit, and just change dosage or stop taking whatever.

Topamax is NOT the medication you can just quit cold turkey or you may have seizure, just as you did, unfortunately.

You should have started to cut down on the amount, SLOWLY.

My advice go to nearest doctor or ER asap,
they will probably have you start taking 25 mg less every other WEEK.
WEEK not day or you will have another seizure,

but I am sure the doctor will tell you best.

Now, about this quack who Rx you Topamax- Topamax can be a wonderful medication for M prevention
BUT it shouldn't have been rx-ed in the amount you got.
No the starting amount is standard 25mg, some people I know start even from 15 mg!
and I personally agreed with my dr that I will not increase to 50 mg unitl I will feel comfortable that the side effects have passed, and it took me three weeks!
As some drs like to jump up every week or even sooner than that - I made sure I will have more than that, and I did
and thanks to that my adventure with Topamax was quite comfortable comparing to many.

On the positive note, I hope that will be a valuable lesson to you for future.

Any drug, before you put it into your mouth - do a research online- find out what a usual starting recommended dosage is, increase steps, whether or not you can just stop taking it suddenly, etc,
ask any questions, know that you have rights as patient and you can ask for longer period to get used to the side effects.

Hope that helps Smile

Risa
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Post  sherri b Mon Jan 17, 2011 4:57 pm

You go Risa! I totally agree with you.

I didn't realize that she was coming off the Topamax. You are right. That is probably why the siezure! That's very serious.
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Post  Migrainegirl Mon Jan 17, 2011 5:56 pm

Please note, 314 was only on Topomax for 1 week. Had it been months you would certainly be right about a gradual decrease. I had only been on it a week also when I got the bad side effects and my doctor told me to discontinue asap. No need for a gradual weening. But 314 was on a higher dosage than I was. This is where a knowledgeable doctor would have been handy. Sadly his doctor was totally AWOL with a patient having frightening hallucinations. That type of thing can get people killed. And the longer you are on It, the worse the toxic build up in your body and the longer to get rid of it to get back to normal. I think stopping cold turkey was probably better in this case, but really a doctor should ideally be involved.
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Post  CluelessKitty Mon Jan 17, 2011 7:41 pm

But 314 was on a higher dosage than I was.

yeah, yeah, I think this is the important difference, isn't it though

so if anyone taking Topamax is thinking of abruptly quitting it -better be warned because imho
EVERY LITTLE THING matters,

and to be safe it's best to leave medicating, practicing medicine to doctors. even though.
If you lost your trust in your dr then contact another one, or nearest ER.

Migrainegirl, one would think the seizure speaks for itself, don't you think?

yes, 314 was only one week on T but the amount was pretty high - starting with 100mg right away is pretty severe,
and I don't know about you but to me the symptoms looked like quite strong individual response to the drug
we have one week of pumping the body with intense steady supply of 100mg of Topamax then boom!
one day sudden withdrawal, hmmm


Even if stopping T cold turkey was recommended I doubt it was supposed to go with the patient unsupervised.

More likely, perhaps another anti seizure medication would be administered or whatever - anything but
being home alone and going into dangerous seizure.


One thing I agree with you wholeheartedly, this doctor is one irresponsible quack, is what he is.

Risa
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Post  Migrainegirl Mon Jan 17, 2011 8:02 pm

I agree with you completely that the doctor is who should be giving direction, which is what I recommended. That he/she was unresponsive is irresponsible and possibly malpractice. But I have seen the effects of someone getting hallucinations and psychotic ideas and it is quite frightening. It is life threatening for that person and others. Suicides and homicides are not unheard of. In this case 314 has already been turned away from the hospital ER as a "drug seeker", making that option difficult too.

Left with the choice of staying on it or stopping it, I personally would stop taking it in a case as bad as this. Of course that is a decision each would have to make for themselves.

Side effects from these drugs are not minor. Given the somewhat cavalier attitude of the medical community (or maybe just lack of appreciation of frequency and severity of these side effects which get little discussion from the drug reps), we have to take a strong role in our own treatment when something is not working. I spent over 2 months completely bedridden because my doctor refused to believe my severe nausea was a side effect of the lamictal he prescribed and just increased the dosage rather than taking me off of it as I asked. I've learned my lesson on drug side effects. Others here have been hospitalized and institutionalized from drug side effects. These are quite serious.
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