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I was put on Topamax for migraines/seizures post stroke, as we are not sure which it is yet, I am at 75MG/day right now, I am SO tired, all I do is sleep when I am not at work, and even then it is REALLY hard to stay awake. The Dr wants to take me up to 150 MG/day, I mean grant it, it seems to be working, but..........I guess my question is, I know that being tired is a side effect, but will this continue? or is this just a temp thing?

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My daughter Rachel took Topamax and it knocked her for a loop. She wa trying it for her migraines and stroke pain. Of course all those pain meds knocked her for a loop. She tried the Topamax for 2 weeks. It never got better. The doctor took her off.
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I was put on Topamax for headaches, and managed two days before I had to stop. I actually had very low-grade headaches, and I couldn't understand what was being said on TV. It was weird; I didn't like it at all. :yucky:

Susan

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:hiya: Hey there idbl fanatic. I don't have an answer for your post but I saw you are a new member and I don't think I have extended a welcome to you yet. :uhm: I don't know if you had introduced yourself in the New Member forum but let me just go ahead and say, :welcome: Welcome to Strokenet! I am sure a member here will be able to answer your question.

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I've been on Topamax for about a year now for seizures since I seized at my wedding. Initially

I had some mild headaches, which was more like a tightening in my head from them and some tingling in my hand and foot on my effected side, but that lasted only about a month or 2. I have no other side effects from Topamax nor have I had a seizure since, the stuff works fine for me. Fatigue is a MAJOR neuro effect of a stroke. I am 2 1/2 years post stroke and am just reaching the point where taking a shower and getting dressed doesn't require a nap afterwards. The simplest tasks require our brains to work much harder so we become tired so we tire very, very easily, as our brains rewire and retrain, it slowly becomes somewhat better, but it takes a very very long time. Welcome to the site :) you will find many warm caring supportive people stick with us :friends:

Maria

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  • 3 weeks later...

I am also on Topamax 75mg/day, for migraine prevention. It took me 2-1/2 months to adjust to it. But now I don't notice it at all; I may as well be taking a sugar pill. I do sleep well at night, but I am not tired during the day. I take 50 mg in the morning and 25mg in the evening.

 

Are you exercising (in whatever way you can)? Eating well? Drinking plenty of water? These help with increasing energy and I really notice the difference. I also really notice the difference re: when I take a B complex vitamin.

 

If the meds are working, you might just want to hang in there for a while longer... I think the side effects can go away eventually!

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Hi!!!!

 

My daughter has sufferred with severe migraines since she was 12 years old. She is now 24. She was put on Topamax. She was taking 200mg daily. It also made her tired - but within a few months this side effect lessened. It was very effective in controling her migraines.

 

I hope the same for you!!!!!!!!!

 

Kim :)

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  • 1 month later...

i am on 400 mg per day of topamax. and it takes months to get on that high of a dosage. i am pretty sure that you are suppost to start out at 25 mg and ramp up 25mg per month. if you try to ramp up quicker than that you will go completly what i will call (for lack of a better word) psyco!!!!!

you will not be able to do math, connect enough words to say a sentence, drive a car because you can not think long enough or well enough to work or watch a tv program.

after about 6 months on the drug your body adjusts and it is HEAVEN!!!

my migraines are partially onder control enough to where i can get out of bed on a daily basis and be in a room with light.... HUGE PROGRESS!!!!

but it is a drug with a large amount of side effects. really bad side effects.

and if you miss one dose when you are on a large amount like myself you will feel the confusion within a few hours starting to come on. so always have some in your purse or in the car and in the house.

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  • 4 months later...

I just started Topamax...can anyone that posted give an update or anyone new that just started Topamax have any problems since this thread was started? I'm taking it for floaters, balance and/or seizures .

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Charlie,

I was initially told that I would have difficulty finding words and compiling sentences. The doctor also wrote me a script for provigil at the time which I could have taken to counter the effects if they became too bad. I never had a glitch, it never effected me at all. I was on 200 mgs. right from the onset. It's ironically the only anti-seizure med I've been on from which I haven't suffered a negative side effect.

Maria :friends:

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Update

 

I went and saw the Dr the day after Christmas and I have only had one seizure since I have been on it at the full dosage, which I should have known better, but I went into the store anyway, it is a craft store (Joann) and it does it to me every time, this time was pretty bad, I actually got disoriented, didnt know where I was, with this one, and I had to sit down, eventually I left the store and sat outside while my wife finished what she needed to get in there, this was before I saw the Dr. I told him about this. and he said that if need be, I was "authorized" to go up to 250 mg/day, but seeing as this was the only time it has happened, and I know that this store does it to me, and I have narrowed it down to fluorescent lights that don't have a Diffuser on it, I think that I will stay with the 150 mg/day unless it gets worse

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I guess I should of added I was started on 25mg and will move up to 100mg over time. I do see the lose of words and the need of spell check a little more. Since I started it I do feel better.

 

Has anyone taken this for migraines?

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I'm on Topamax, and actually started out on 100 mg. My side effects were tingling in my scalp, face and nose. Tingling in my extremities and numbness in my extremities. It was awful, so the backed me down to 50 mg.

 

Now , today I had an episode, that my doctors aren't sure if it was a migraine or seizure related to my stroke, so we are upping the topamax 25 mg. I'm sure I'll do better with it now than I did at first being I'm more adjusted to it now. :)

 

I'm just kinda bummed because now I have to go and have an eeg hooked up to me so they can rule out seizures on me. I guess because of where I had the stroke, seizures are common. I don't think I'll ever get used to this.

 

Lisa

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  • 1 month later...

hello, I'm June and I'm new here (I posted in introductions) I haven't take in post stroke, but I was on it for Migraine prevention for a short while. Even on a very tiny dose I couldn't stand the side affects. I got lost on my way to work (a route I had been taking for years), and it took me 4 hours to grocery shop because I couldn't decide whether to buy flowers in the flower section and what kind to buy. I couldnt' remember the simplest words, and it drove me insane. They switched me to something else that worked well

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  • 2 weeks later...

For most medicines, you can put http://www. then the medicine name then .com and get the name of a web site where you can get more information about that medicine.

I tried it for aggrenox, getting http://www.aggrenox.com and going there took me to http://www.aggrenox.com/consumer/index.jsp

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I've been on Topamax for about 3 weeks now for migraine prevention. I started off at 25mg/day for a week, then 50mg/day for a week to get up to the prescribing dose of 75mg a day. The biggest side effect I've noticed are my diet cokes (my favorite drink ever!) taste funny (this is a tragedy - trust me) and it's caused some stomach/digestion/bowel issues, but they all seem to be subsiding. I've only noticed the tingling a few times, and I've never gotten confused or disoriented that I can remember (ha)! It did make me feel like I had the blahs for a day or two after starting it and after each time I increased the dosage, but that's gone away...as have my migraines! I really hope this is the one!

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  • 1 month later...

I wanted to ask people taking topamax if anyone has ever experienced repeated bouts of bronchitis or problems with respiratory issues?

 

I have problems with my lungs to begin with and one of the side effects of topamax is bronchitis and recently I found out you could get blood clots...YIKES...and bronchitis.

 

This winter has been absolutly horrible for me. I've had bronchitis six times so far and was hospitalized once with pneumonia. Right now I'm fighting off bronchitis and trying not to go on another antibiotic because of the damage they are doing to my body. I end up with infections in other areas if you know what I mean. My body is so shot. I feel like I'm just not what I used to be.

 

Now I have to wait to go see my neuro to see what they want to do. The med really isn't stopping my migraines all together. I'm still getting them, just not as many, and I am still getting visual disturbances. I hate this. The visual disturbances and flashes of lights are very common and almost daily. And probably migraine related.

 

Thanks everyone

 

Lisa

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Thanks for the web site and the information. But what I was really looking for was actual people and if they experienced getting bronchitis while on topamax for any length of time or not. That and a long list of other side effects. I have already read all the web sites and possible side effects. I get tingling in my nose, parts of my face, my fingers and hands and feet and bottoms of feet and I'm still getting occasional migraines and visual disturbances.

 

Just curious.

 

Thanks :)

 

Lisa

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Lisa,

I've been on it for 2 years for stroke acquired epilepsy. No bronchial issues. I did have a great deal of the tingling thing for quite a long time and then it just stopped, it does return from time to time. Not my nose though just my hands and feet. I've also never had any visual disturbances that I'm aware of, if possible could you be more specific? Of all the listed side effects, these and some minor headaches in the beginning are the only I've had.

Maria

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Hi Lisa,

 

Welcome!

 

I have been on Topamax for a little over 4 months for seizures and migraines.

 

It took my body a while to adjust but it is finally working. The migraines are less frequent and severe and my last seizure was not as intense as they were in the past. The unfortunate part is that I have had one illness after the other; all respiratory. They tend to hang on and are resistant to most antibiotics. Like you, I end up suffering with other issues in efforts of treating the core problem.

 

It is a viscous cycle with no clear answers. Do we stop taking Topamax and deal with the seizure and headaches; that are still present even on the medication? If we stop will the respiratory problem resolve themselves or is there to much damage already?

 

I am almost 3 years post stroke and continue with the tingling sensations in my nose, parts of my face, my fingers and hands and feet along with the migraines and visual disturbances. Every stroke is different and everyone recovers differently. I wish I could give you a black and white answer but I am still looking for them as well.

 

Best of luck to you.

 

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Hi Cathy,

 

You are on for migraines and seizures. I'm on for migraines. It's what they think is what caused my stroke which took place in my occipital lobe. Anyway, I'm thinking that maybe coming off the darn topamax and trying a different migraine med could be the ticket for me.

 

I'm hoping anyway. I go to see my neuro tomorrow. I'm going to talk to him and see what he says. At first he was thinking I was possibly having TIA's with the visual disturbances, but if thats the case, then I've been having them for years and years. We'll forever, then. Either that or they are migraine related. With my stroke, I lost a decent chunk of my vision. I feel like I hunt around in the dark, through tunnel vision lol.

 

Anyway I'm thankful that's the worst of my damage. It could have been a lot worse. I do have to now depend on others for rides and such and my balance isn't what it once was, but hey, like I said it could be way worse.

 

Hopefully my neuro will get to the bottom of this tomorrow. Thanks for the response. I'm glad I'm not the only one dealing with this issue. I thought I was kinda nutty here. My lungs are so weak to begin with. I have asthma and COPD. And they can't handle much more. Things are just not feeling so great. Right now I'm holding off on going on another antibiotic for fear of the consequences.

 

Well, must go here, got to spend some time with the grandson :)

 

Thanks a million. Glad to have found this site. It's so helpful.

 

Lisa

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