Topamax and FL heat

[lovethattink]

Does anyone have any experience with Topamax and the Florida heat?

 

[SueM in MN]

bumping so hopefully someone can answer

 

[BeccaGrace]

My dd-3 is on Topamax for seizures and the no sweating thing has been a struggle. We planned our WDW trip for December and while people didn't like the "cold" weather, we were blessed with a week of temps in the 50s and 60s and it was perfect for her. There is no way we could have done the trip in typical Florida heat...we start noticing Becca overheating with temps in the low 70s even if she is in the shade. We spent all of last summer inside in the air conditioning and let her play outside very early in the morning or on cooler evenings.

If you do have to be outside in warmer weather...carry ice packs, LOTS of cold water, washcloths to soak with cool water and put on the back of your neck & forehead. I've heard the first aid stations & counter service places will give you ice if needed. The little hand-held fans and misters also work well. Stay inside as much as possible during mid-day...do the parks first thing in the morning, leave before noon, and come back in the evening.

We didn't need to use the GAC this trip but from what I read in researching they can let you wait in a shady area but that would not have been enough--in our case shade doesn't really help enough, only AC will do. It's a good excuse to go shopping in the nice air conditioned shops

Hope this helps! I would definitely suggest a winter trip!

 

[lovethattink]

Thanks for the information. I was just put on Topamax a few weeks ago. A winter trip is not an option, lol, I live in Florida. I am concerned about how my body will handle the heat with not being able to sweat. At this point, I'm on fairly low doses, so hopefully I won't be as affected.

 

[bavaria]

My first post on this board!

I was on Topamax for some time (and am thinking of going back onto it). I frankly didn't read the warning (and wasn't warned) about the body regulation issues. (Too hung up on the confusion and severe weight loss ones - confusion was only a day or two, weight loss continued and was a good thing in my case, but could be bad in other cases)

I took 2-3 trips to FL during the winter season while I was on the drug, with days in the 70's and 80's. Frankly, I was really hit hard although I didn't realize it at the time. The heat sometimes seemed to incrase the confusion factor, and I am sure that some CMs thought that I was clearly nuts. I did find that I had some dizzy spells which I think now came from the medication.

Hopefully if you live in a warm climate and are used to the warmth, you won't be hit as hard. I suspect that the change in climate had an impact on me.

With best thoughts to you,
bavaria

 

[ducklite]

My son takes it and has had no problems with it as far as the heat goes, although he started on it after the worst of the summer heat had passed.

Anne

 

[JenJen]

I am on topamax and I had no idea about the heat restrictions until about 2 months ago. I do know now why I passed out a few times at Disneyland. Everyone just assumed they were siezures and so did I because I don't really remember much when I have them except I get a strange taste in my mouth. I have petite mals so I don't shake really hard normally I just stare and I am out of it. Although I love the medication because I have been siezure free for some time now it has been terrible on my teeth. I had no cavities until I went on topamax. Now I have three cavities and two extractions that need to be worked on in two weeks. Also I have noticed my hair is thiner and it does not grow as fast. I have lost 60 pounds on it but that was needed because I gained 100 on Depakote.

If you go during the heat I would get the GAC that provides shade but I am not sure if that would help much because it has nothing to do with the sun just the high temps. I think it is better to have it just in case. Best of luck to you
(((((((((((((((((((((hugs))))))))))))))))))))))
Jen

 

[ducklite]

Jen--Have you tried Risperdol? My son used that after Depakote. He now take a small dose of Rispersol and an "average" dose of Topamax with pretty good results. Risperdol has a lot less side effects than Topamax and the dreaded Depakote, but it can cause drowsiness on higher doses.

Anne

 

[JenJen]

I have taken Risperdol for sleep but not for siezures it really makes me sleepy. I was on the lowest dose possible in a tablet at the time. I really LOVE topamax I just wish all my teeth were falling out!

 

[lovethattink]

My SIL has me worried about taking it. She had some really bad side effects. So far I'm noticing a few. The nausea, a strange feeling on my tongue when I drink carbonated beverages, I'm not sleeping nearly as much as I use to, and I seem to be getting alot of leg cramps. My neurologist said if I start to feel confused or can't find my words to take some alkaseltzer. He said that feeling is due to a lack of carbonic acid in the blood. He said the alka-seltzer will replace that, and take care of the confusion. I sure hope nothing happens to my teeth. I never needed braces as a kid, never had a cavity until I hit 30, etc.

 

[bavaria]

WOW very interesting thread! Obviously this is a drug which impacts everyone very differently. For me it was loss of appetite, dropped about 40 lbs. Can't comment if my recent dental problems were exacerbated by the drug, but basically I could have put a downpayment on a house or bought more DVC points with what I spent on dental work last year.

Like JenJen, I was never warned about the heat restriciton (maybe because I live in a damp, temperate climate?)

Does everyone take Topamax before bed? I remember a few trips to WDW when I didn't drive, and was worried about making it to the bus stop in the evening. I found that the lights at night made it really tough as things became kind of dizzy and overwhelming. The Hallowe'en lighting at MNSSHP was really bad - I had to hold my hands to the sides of my face like blinders.

 

[BeccaGrace]

OMG--I've been trying to research whether there was a link between Topamax and dental problems because I hadn't read that in any of the materials. Becca just went to the dentist and had FOUR cavities --I was heartbroken because she loves to brush and I couldn't understand it. I thought it was because she boycotts swallowing her meds and holds them in her mouth with whatever we mix them with. That really bums me out that it might be the meds She might start weaning later this month---not sure how I feel about that yet (yay for one less drug, yuck if it means seizures come back) but I will definitely be asking her neuro about the teeth issues!!! Thanks for mentioning this...I thought I had heard everything about Topamax but not that one!

 

[ducklite]

My son takes it in the am. His Dr, prescribed it for bedtime, but he says it disrupts his sleep, and he likes to take his Risperdol at night. OK, whatever. His MD says that as long as he's happy with it and not experienceing side effects from taking it in the day, he doesn't really care when he takes it.

You pick your battles when dealing with an almost 20 year old--he's certainly old enough to have input into his medical care... (I have legal guardianship as far as medical decisions due to his past psyc. history)

Anne

 

[bavaria]

For those of you with dental issues, Colgate has a prescription only high fluoride toothpaste called Prevident 5000. Ask you dentist about it, it may help. I used it for abouta year after going off Topamax (my dentist prescribed it, not my doctor)

 

[Nordicpollan]

Every time a query comes up about Topamax. I read with totally zeal.

I have learnt so much about the side effects from this board. No one could explain why DS2 kept getting over heated, why he didn't like fizzy drink (having always loved Coke in the past)
You guys have been able to give me answers almost before the problem arises

We now know to make sure DS2 wheelchair has a sun canopy over it in the sun(not that we get a huge amount of really warm weather here in the UK).

For our trip in Sept/ OCt this year we are ready for the sun , to make sure he is really well hydrated, and from now on to find a drink that is not fizzy and he will drink!! (I do keep him well hydrated via his G.Tube, but like him to have some fluid Orally)

Thanks again

Karen

 

[ducklite]

Interesting on the soda comments. My son used to guzzle the stuff--yeah, I'm a rotten mom, but it's pretty difficult to tell a 17 year old not to...and I did make sure to get milk into him, even if it meant milkshakes or whatever.

Anyhow, since going on Topamax I've noticed he's not as into the soda and drinking more iced tea instead. Wondering if he doen't even know why himself?

Anne

 

[lovethattink]

The only way I can describe the feel of soda in my mouth is this...it feels like one of those atomic fire balls hitting my tongue. I've switched to sweet tea, lol, I'm sure that will really help the teeth.


I know that Topamax has something to do with Calcium and saw about calcium loss. I was concerned about osteoporosis and am looking into that. What about the calcium loss and the kids on the meds? Could the calcium loss have anything to do with the tooth decay?

 

[JenJen]

Sodas taste terrible on topamax so does some fruits.

 

[BeccaGrace]

The only way I can describe the feel of soda in my mouth is this...it feels like one of those atomic fire balls hitting my tongue. I've switched to sweet tea, lol, I'm sure that will really help the teeth.


I know that Topamax has something to do with Calcium and saw about calcium loss. I was concerned about osteoporosis and am looking into that. What about the calcium loss and the kids on the meds? Could the calcium loss have anything to do with the tooth decay?

It helps so much to hear what adults on Topamax have to say because Becca has limited speech and she can't tell me what she is feeling/experiencing on it. She's only three so we don't have to deal with the soda issue but she ONLY wants to drink milk--which is good because of the calcium issues (but bad because she has a horrible cold and not letting her have milk right now has been nightmarish!).

I recall reading on the epilepsy boards that a child on Topamax was diagnosed with ostopenia (sp?) and her mom was suspicious that it was due to the Topamax. Our neuro said that would be very uncommon...sometimes I don't know what to think

 

[lovethattink]

Sodas taste terrible on topamax so does some fruits.

Just curious, which fruits? I've only eaten bananas and apples and haven't noticed anything with then.