Topamax and Lack of Sweat

[Starburst]

Hi, hope everyone is doing well. My baby is now two years old and still has seizures despite consistent treatment with Keppra and Topamax.

Was just wondering if anyone has experience with Topamax and overheating. I have read that Topamax may cause a child not to sweat properly. Ever since the summer started, I haven't seen my son sweat at all even though we live in a hot climate. What happens is that he instead becomes very red in the face when hot.

Today I suddenly noticed that he was bright red and was also having trouble breathing (as though he was having an asthma attack). The breathing issue is something that never happened before. We were sitting in an air-conditioned car, and the air was nice and cool, but the sun was still shining through the window.

I quickly splashed cold water on my son's face and gave him cool water to drink. He was soon okay after that but I almost panicked not knowing whether we had any water in the car. It made me think how quickly the situation could change in different circumstances. He probably spent ten minutes in this state before I realized what was happening.

Has anyone else dealt with this?

Does the fact that my son overheats in this manner mean that Topamax is unsafe for him to take?

 

[sassi]

My doctor warned me about this and told me to call her if I was unable to sweat due to taking the Topamax. I haven't experienced it (I have overactive sweat glands anyhow so that might be why?) but I would call your doctor and report it because it's not good when you can't sweat and they might need to tinker with his medications because of it or advise you on keeping him out of the heat (any heat at all). How long has this been going on?

 

[BrandiBrat]

Up until last week I was on 350mg a day of Topamax. One of my chief complaints to my Epileptologist was the inability to regulate my body temperature and sweat. Anything over 90 degrees made me feel like I was going into heat exhaustion. Instead of sweating, I found that if I went out into the heat I'd get hundreds of little sweat blisters all over my body. They didn't hurt, but it was pretty weird. In the winter I was very cold, as well.
I hope your son is okay, as hard as it was dealing with it as an adult it's got to be hard on him too.

 

[Starburst]

Thanks to those who replied. It means a lot to me. I think I first started noticing the problem in April. Got in touch with the doctor, and he said the problem could be caused by the medication and that I should keep my son out of the heat. Although I have already been doing this, I don't know how sustainable this will be in the long-run as my son becomes more active and has a greater desire to join his siblings in outdoor activities. Also, the incidents do not necessarily take place in the sun or outside. He just seems to suddenly get hot.

 

[sassi]

If he is overall doing well on the drug I can see why your doctor didn't immediately jump at the chance to switch him over but at the same time I would ask, as he starts getting older, about doing something else just for the sake of allowing him to lead as normal a life as possible. I, myself, hesitate to type this as well because I know it's tricky with medications and I'm probably going to have to adjust mine here shortly. I also know how hard it's going to be to have to try to explain to him why he can't go running around with them because he'll become overheated and end up hurting himself. This is one of those catch-22's. I wish you so much luck with this and I hope you get an answer that satisfies what he needs!

 

[Starburst]

Thank you, Sassi. I have to admit I am feeling really discouraged and overwhelmed lately. I also have an older son recently diagnosed with epilepsy as well (he is 18 ). He is taking several medications and still has seizures, plus what seems like cognitive side-effects, not to mention the cost of the medication, which is simply overwhelming as we do not have insurance. I want my sons to be treated but feel disillusioned with the whole thing. It just seems there is no end in sight to the challenges, and I don't really feel yet that we are on the right track. The whole thing is indeed a catch-22.

 

[donnajane]

It was interesting to read re how your goes bright red. My little boy 32 months often has issues with his temperature control but they don't think its due to his meds as he is on Tegretol. He can suddenly go bright red/hot and look awful and it can be a really cold day outside. But then he can also wake up from his nap with his bed looking like someone through a bucket of water over his head and in his bed. His paediatrician thinks it is due an underlying metabolic issue which they are still looking for or it could be the location of his brain lesion, on his putamen. They can't say. Hope things improve for you and your boys.
Donna

 

[Starburst]

Thank you, Donna. Hope you find the answers you need. It is hard when they are so little and can't tell you what they are feeling.

 

[Starburst]

Just an update for those who may be interested. It is now April again, and my son is having the same issues. We managed to get through last summer, but it is now clear that we cannot continue like this now that he is older. We went out for a picnic yesterday, and he was so uncomfortable and looked like he was going to explode from the heat. The neurologist agreed that we need to take him off of Topamax...but he has to start taking another medication first before we can start reducing the Topamax. So, it will be another 2 months before he can even reduce the dose. Then God knows how long it will take to taper down...and something else that surprised me is that the sweating issue can last for a very long time even AFTER one stops taking Topamax. I was reading about this on some different websites and found people who said they still did not sweat for up to a year or more after stopping the medication. I was hoping that we would be able to resolve this issue immediately in anticipation of this summer, but it seems that it is a very long process and might even take until next summer before he gets some relief.

 

[tiggy'smom]

I've been on Topamax for 7 years now and though I do still continue to sweat, I am very heat intolerant. If I go out into the heat My face gets bright and blotchy red and I noticed too that creams I used for years I can no longer use. My family (on my mom's side) have all always had low normal body temps, usually 96-96.5 if we get to 99 we are sick, try convincing the docs. In the summer I do moniter my temp and when my face gets that blotchy look and I am excessively sweating, and I to have trouble breathing, my temp is up around 99-100. So it is a fine balance between the med and my body. I wish you luck with your boys. As for the meds, I don't know what your older son is on but sometimes if you contact the pharm companies, they sometimes help patients pay for the meds when they don't have insurance.

 

[Lynda1]

I have been taking topamax for years now but I do find that I don't sweat so much, but I do get really hot & dizzy almost, but I try to drink a lot of water during the day especially if it's warm outside to cool my body down


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[Starburst]

Just another update on this issue (it's been about a year since I wrote my original post).

We eventually weaned my son off of Topamax, and he started sweating again three days after stopping the medication. This has been SUCH a huge relief as he can now go outside and play normally. I never thought I'd feel so happy to see another human being sweat!

My advice to others in this situation would be to explore alternatives with your doctor for your child. It is really hard for a child to be so hot and uncomfortable, and I regret waiting so long to resolve this problem.

 

[Starburst]

As I was telling my husband, we were basically paying $100 per month for my son not to sweat!

 

[Belinda5000]

I've been on Topamax since 2004 and I don't sweat at all.

I may not live in California but I'm in 80%humidity in Georgia

 

[Nick88]

Thanks for posting about this, it explains a few things for me.

I've been taking Topamax for years and I've always noticed that I don't seem to sweat very much if at all (I live in UK, but it was hotter that California here recently).

Also the only trigger I've ever noticed is the heat.

 

[BrandiBrat]

I took 300mg Topamax for a year and it was the weirdest thing... I wouldn't sweat normally, but rather, when I'd go outside (and I live in the So. Calif. desert) I'd get hundreds of tiny blisters that held sweat in them. So, I guess I'd sweat but my skin was closed up and wouldn't let it out. Very annoying and it took my Dr forever to switch me to Zonegran. I can sweat normally on Zonegran.

 

[Meetz1064]

I've been

on Topamax for more than 10 years (along with a few other E meds), and am just now connecting the dots, in terms of my body temp and sweating, and I thought I had figured everything out after nearly 50 years. Pfffftttt.

I do normally have a low body temp....96.6 or so. If I'm at 98.6 I'm sick. I have to continuously drink all day to maintain my body temperature so that I don't feel like I'm burning up....and I usually drink about 3 liters of water plus a couple of cups of coffee. I don't necessarily turn red, but you can feel my skin go extremely warm if I don't drink that much.

I only truly sweat when I'm so very overheated, or really ill, that it just suddenly pops out.....and i am completely drenched. Other than that, I really don't sweat...and I lived in the US most of my life, and now live in the UK.