Topamax and FL heat

[JenJen]

Things with very high acid content like Oranges, peaches, plums. I love Bannanas still but I am not a big apple eatter to begain with so I would not know about that one

 

[LMC]

I've been on Topamax for about 3 yrs and have never had any problems. I am a very low-perspirer anyway so maybe that's why. Didn't even know that was a side effect, didn't know about the osteo either. Guess I'd better educate myself when I go back next month for refills. I have'nt noticed any taste changes either, I still enjoy my 1, 2, 3 or 5 Dr. Peppers a day.

My only complaint is the peppermint taste of the med itself, yuck!

 

[4fosterkids]

Hi Lovethattink.
My son took Topamax and we had problems with overheating. Mainly in the summer, or on very hot windy days (So Calif), but even on cool days where he would overdo activities he would have a problem.
At the time he was on it, he was around 10 years old. He drank Poweraid before, during and after activities. We had a few scares where he turned very red, purplish in the face and was "panting" almost. That was very scary. He stopped sweating while on it, but when he stopped taking it, he began to sweat again. Unfortunately it did not control his seizures well and he lost more then 1/2 his speech & thinking skills taking it, so we dumped it after about 4 months.
Good luck to you. Remember everyone reacts differently to meds. Just be knowledgable on the side effects.
See you in VMK !!

 

[beckmrk04]

Hi- I saw this thread and was interested. I take topamax as a migraine preventative, and it seems most others are posting that they take it for seizures? Am I reading this correctly? I didn't know about the heat warning, or the dizzy thing- although I guessed, since I have been taking it I have gotten a few very odd dizzy spells. And I have noticed that my coca-cola tastes a little different (I'm a total coke addict), and I sleep- a lot now. But my question is: what doses are people on that they are being affected by heat? I take 25mg 2x/day. It has really helped my migraines, but I didn't know about the heat thing or the dental issues, and could really use some insider info, if anyone cares to share! Please post or feel free to PM me! I would really appreciate it!

 

[lovethattink]

Hi Lovethattink.
My son took Topamax and we had problems with overheating. Mainly in the summer, or on very hot windy days (So Calif), but even on cool days where he would overdo activities he would have a problem.
At the time he was on it, he was around 10 years old. He drank Poweraid before, during and after activities. We had a few scares where he turned very red, purplish in the face and was "panting" almost. That was very scary. He stopped sweating while on it, but when he stopped taking it, he began to sweat again. Unfortunately it did not control his seizures well and he lost more then 1/2 his speech & thinking skills taking it, so we dumped it after about 4 months.
Good luck to you. Remember everyone reacts differently to meds. Just be knowledgable on the side effects.
See you in VMK !!

Thanks for the response. Saturday was the first real hot day that I was outside. We went to MK and boy did I feel it. The others in my party had sweat dripping down their faces, and I did not. At one point they went on Space mountain and I was walking around with the toddler. I started to "feel" funny. So we went into the exit of space mountain. The fan was really blowing and I started to cool off. Guess those 90 degree days of Aug and Sept will be really fun. I'm just going to have to be extra cautious.

Hi- I saw this thread and was interested. I take topamax as a migraine preventative, and it seems most others are posting that they take it for seizures? Am I reading this correctly? I didn't know about the heat warning, or the dizzy thing- although I guessed, since I have been taking it I have gotten a few very odd dizzy spells. And I have noticed that my coca-cola tastes a little different (I'm a total coke addict), and I sleep- a lot now. But my question is: what doses are people on that they are being affected by heat? I take 25mg 2x/day. It has really helped my migraines, but I didn't know about the heat thing or the dental issues, and could really use some insider info, if anyone cares to share! Please post or feel free to PM me! I would really appreciate it!

I, too, am taking it for migraine prevention. I get both hemi-plegic and classic migraines. So far it has worked wonders. 25 mg 2x/day is a very low dose. Those taking it for seizures generally take higher doses. That's great that you have been able to keep the headaches away at that dose. Usual migraine prevention is 50 mg twice a day. Your pharmacy should be able to get you a printout about the medication's side effects.

 

[SueM in MN]

25 mg 2x/day is a very low dose. Those taking it for seizures generally take higher doses. That's great that you have been able to keep the headaches away at that dose. Usual migraine prevention is 50 mg twice a day. Your pharmacy should be able to get you a printout about the medication's side effects.

For seizures, the usual dose is 200-400 mg a day total.
The recommendation for migraine prevention is to start at 25mg twice a day and the usual dose is 50mg twice a day (as was already mentioned).
The side effects are more likely at higher doses.
The pharmacy will have printouts with information, as lovethattink mentioned. They should have printouts for both use for seizures and for migraines.

 

[beckmrk04]

lovethattink and SueM: thanks for the responses. I have only been on it for about a month, so... so far, so good! I am so glad I came across this thread though! I haven't noticed too many side effects, but wouldn't want to be surprised at DW!! Thanks for your help!

 

[BeccaGrace]

Becca is on 60 mg/day but she is only 3 1/2 and weighs 26 pounds

And we talked to her neuro today...he doesn't believe there is a link with the teeth issues. But he is really concerned about if the Topamax is having an effect on her speech/learning so he wants to start weaning her after her next EEG. Kind of nervewracking but it will be nice to go outside when it is nice out!

 

[lovethattink]

Becca is on 60 mg/day but she is only 3 1/2 and weighs 26 pounds

And we talked to her neuro today...he doesn't believe there is a link with the teeth issues. But he is really concerned about if the Topamax is having an effect on her speech/learning so he wants to start weaning her after her next EEG. Kind of nervewracking but it will be nice to go outside when it is nice out!

My SIL was taking very high doses (way beyond the recommended doses) of Topamax for seizure control. Her speech was crazy. She seemed always at lost for her words. She knew what she wanted to say, but she couldn't "remember" the word.

She also had bone issues. She broke her wrist and it took years to heal. She is now off topamax. Had brain surgery for her Epilepsy and has been relatively seizure free, woot!

 

[3DisneyNUTS]

My 5yr old son did not have overheating issues from Topamax but he had other side effects. The odd thing is we didn't realize how "severe" (for him) they were till he was off of it. He has been diagnosed with Apraxia and he had severe word retrival issues. We could watch him try to get the word out and it wouldn't come Then once his was off the topamax his speech picked up incredibly. He is a chatterbox now. Still delayed but you can see he has much more access to his words.
He is on Keppra and Tegretol now BUT he is still having a few seizures daily which absolutely stinks! I don't know what the next step is but if I could guess we will probably wean him off the tegretol and start another. He has been on some form of carbazimine.....(spelling)....for 2 years. That was his base drug. He was seizure free for 1 year on it. But this past year we have seen only 6 months of control and when it is out of control he has up to 7 a day I pray they can figure this out. The poor kid has overcome so much.

 

[3DisneyNUTS]

My SIL was taking very high doses (way beyond the recommended doses) of Topamax for seizure control. Her speech was crazy. She seemed always at lost for her words. She knew what she wanted to say, but she couldn't "remember" the word.

She also had bone issues. She broke her wrist and it took years to heal. She is now off topamax. Had brain surgery for her Epilepsy and has been relatively seizure free, woot!

Of course I should have read ahead before posting. My son had similar speech issues on it. How did she recover from the surgery? Did it set her back alot?

 

[lovethattink]

She healed beautifully from the surgery. She is currently taking one medication. Can't remember the name of it. She use to get grand mal and petite mal seizures. Before the surgery, she went for testing and they were able to locate the spot for the majority of her seizures. She was the perfect candidate for surgery. Her recovery went very well. It's been over a year and I think she has still been seizure free.

 

[BeccaGrace]

My 5yr old son did not have overheating issues from Topamax but he had other side effects. The odd thing is we didn't realize how "severe" (for him) they were till he was off of it. He has been diagnosed with Apraxia and he had severe word retrival issues. We could watch him try to get the word out and it wouldn't come Then once his was off the topamax his speech picked up incredibly. He is a chatterbox now. Still delayed but you can see he has much more access to his words.
He is on Keppra and Tegretol now BUT he is still having a few seizures daily which absolutely stinks! I don't know what the next step is but if I could guess we will probably wean him off the tegretol and start another. He has been on some form of carbazimine.....(spelling)....for 2 years. That was his base drug. He was seizure free for 1 year on it. But this past year we have seen only 6 months of control and when it is out of control he has up to 7 a day I pray they can figure this out. The poor kid has overcome so much.

I'm so sorry your son is having such a rough time of it. I hope they can work his meds out to give him control again.
And the word retrieval is definitely part of Becca's problems...she is unable to answer any direct questions. You can see her thinking about it or know it's something she knows but she'll just stand there and look at you. I'll be interested to see how her talking improves once she is weaned off Topamax. Thanks for sharing your son's experience.

 

[JenJen]

I have always call topamax Dopeamax because I can not find words and I just stare at people with a blank look on my face. I have decided with my doctor to wean myself off topamax and see if with the new control over my blood sugar problems I will no longer need the medication. I have seizure when my Blood sugar dips to low or if there are extreme strobe effects but I have been on a relatively low dose (100mgs a day) for some time now and have had no seizures. These also started late in my life at 27 years of age.
I did have another tooth fall apart yesterday and I am almost 100% positive it is because of the topamax because I have never had teeth problems until I went on it.
So back to no driving for me and kind of stay around home until I make sure that I do not seize while weaning off the medication. Wish me luck If I get off this medication I will have gone from 12 medications to 2 medications in two years!!!!!! I know it has to be much easier on my body

 

[3DisneyNUTS]

I have always call topamax Dopeamax because I can not find words and I just stare at people with a blank look on my face. I have decided with my doctor to wean myself off topamax and see if with the new control over my blood sugar problems I will no longer need the medication. I have seizure when my Blood sugar dips to low or if there are extreme strobe effects but I have been on a relatively low dose (100mgs a day) for some time now and have had no seizures. These also started late in my life at 27 years of age.
I did have another tooth fall apart yesterday and I am almost 100% positive it is because of the topamax because I have never had teeth problems until I went on it.
So back to no driving for me and kind of stay around home until I make sure that I do not seize while weaning off the medication. Wish me luck If I get off this medication I will have gone from 12 medications to 2 medications in two years!!!!!! I know it has to be much easier on my body

Dana I hope you have an easy go of being weaned AND that you continue to be seizure free.

 

[lovethattink]

Oh Dana I wish you luck too!


Another question for you all...I woke up yesterday morning and my fingertips and toes are tingling. I'm assuming it is another Topamax side effect?? Can't really tell, because, I get alot of tingling with the hemiplegic migraines too. going to call the doc if it doesn't go away by end of morning.

 

[JenJen]

Not with me but everyone is differant. I know my new blood presure medication is causing this problem. If Just move my hands around and get the blood flowing back into my hands it goes away after a while. I hope that does not continue.
(((((((((((((((((((((((((hugs)))))))))))))))))))))))))))
Jen

 

[beckmrk04]

Oh Dana I wish you luck too!


Another question for you all...I woke up yesterday morning and my fingertips and toes are tingling. I'm assuming it is another Topamax side effect?? Can't really tell, because, I get alot of tingling with the hemiplegic migraines too. going to call the doc if it doesn't go away by end of morning.

When I started the Topamax my Dr. said I could experience tingling in my cheeks, but I get it in my feet/toes. Usually one area on my heel or under my toes. It usually doesn't last very long, and if I move around it helps.

 

[MermaidsMom]

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[bavaria]

Just wanted to wish everyone well here!

I'm struggling a lot with migraines again this year (had them weekly as a child) and am now wondering if it has anything to do with going off Topamax???? (I didn't go on it for migraines, but since I started it is being perscribed for migraine patients)

Still think that staying off the Topamax is working best for me - I can deal with the tremors (due to nerve damage) but the return of the migraines is getting a little annoying. I thought that I was done with that years ago....