Topamax side-effects?

[TongueTied]

I'm now on 4 AEDs (Keppra, Epilim, Clonazepam and Topamax). Since starting Topamax nearly 2 months ago I've noticed the usual side effects like dizziness and nausea which I can handle, I've also lost 15kg (33lbs) which I'm totally fine with.
I'm really embarrassed, I'm 20 and this isn't exactly something I want to be dealing with, but I've also started wetting the bed most nights and find that during the day I have a harder time making it to the toilet I was wondering if topamax could be the cause? Before starting topamax I would sometimes wet the bed (like once or twice a month at most) but we always put it down to either seizures or my cerebral palsy.
Any input is appreciated

 

[Belinda5000]

Hello Tonguetied

Topamax has weight loss as a side effect and a person can lose control of there bladder after a seizure also that is very common.

 

[TongueTied]

Thanks Belinda5000, the thing that worries me though is that it's not only when I have a seizure that I wet myself now. I find myself going to the toilet like 3 or 4 times an hour during the day, sometimes not making it because it just happens so fast.
I rarely have seizures in my sleep (I've got a monitor in my room), but I've been wetting the bed nearly every night now which has me worried and extremely embarrassed
The start of it all kind of coincided with starting topamax
Thanks!

 

[Nakamova]

Hi Tongue-Tied --

Frequent urination and urinary incontinence are known side effects of Topamax. They could also be a warning sign that Topamax may be affecting your kidneys -- you should definitely mention it to your neuro. The rapid weight loss may be welcome to you, but it can also be a warning sign -- you may be getting unbalanced nutrition due to Topamax's appetite suppressant side effect.

Rapid weight loss and frequent urination are also symptoms of diabetes. The Topamax is the more likely cause, but you may want to get checked out by your regular doc just to rule out any blood sugar issues.

 

[Cint]

Rapid weight loss and frequent urination are also symptoms of diabetes. The Topamax is the more likely cause, but you may want to get checked out by your regular doc just to rule out any blood sugar issues.

Not only are rapid weight loss and frequent urination symptoms of diabetes, so are vision changes and thirst. When I was first diagnosed with Type 1 Diabetes as an adult, I was taking Topamax and Keppra for E and an anti-psychotic med for depression. It was the depressive med that brought on Diabetes. However, Topamax did cause me to lose 20 lbs. before I was taking the anti-psychotic med, so when Diabetes entered the picture, I could only tell because of the blurred vision. It was my optometrist who made the diagnosis.

Sounds like you're on a lot of AEDs.

 

[Dutch mom]

My son refused to drink on Topamax, which was worrying because of Topamax' effect on kidneys.

 

[masterjen]

Topomax does have the added benefit of weight loss, but that shouldn't be a reason to stay on the medication. The side effects you are describing do sound worrisome, and are worth an urgent call to your neurologist.

 

[TongueTied]

Hi Tongue-Tied --

Frequent urination and urinary incontinence are known side effects of Topamax. They could also be a warning sign that Topamax may be affecting your kidneys -- you should definitely mention it to your neuro.

Rapid weight loss and frequent urination are also symptoms of diabetes

I've looked everywhere and haven't been able to find anything about incontinence being a side-effect, so that's really reassuring to hear. I have had a pee test and blood test to check my kidneys and med levels and everything came back fine, I would assume they would've checked my blood sugar level in the test as well?
I've mentioned it to my neuro but she doesn't seem fussed as the topamax has decreased my seizures (which is obviously her main goal)
My neuro doesn't seem too concerned about the weight loss at the moment either as it's basically taking off the weight that Epilim caused me to put on, she said as long as I'm eating the same as I was before topamax and I don't lose much more weight (I'm currently 54kg / 120lbs) she's happy with topamax at the moment. I'm not exactly thrilled though :|

 

[masterjen]

Another possibility to explain the bed-wetting is that all the medications at night knock you out so much that you are in too deep a sleep to recognize the initial signs of needing to use the bathroom.
Some possible solutions I thought of:
-can you adjust your medication dosing so that you take less at night so you are more apt to wake up when you first notice needing to urinate
-get one of those bed-wetting monitors that are supposed to help wake people up at the first signs of urination (designed for young kids, I think, but who cares: if it works, it works)
-if you have some idea when you wet the bed (ex. do you wake up in the night at a fairly consistent time noticing the bed is wet) set your alarm for an earlier time than that so you can get up and go to the bathroom. This might take some trial and error to find the best time to set your alarm.
-I know that with Topomax fluids are important, but if it is safe to do so as per your neurologist do not consume beverages within 4 hours of going to bed and that way perhaps your bladder may be better able to hang on until morning

Do you take any other medications? For example muscle relaxants affect all muscles including those around the bladder, etc. and can make urination easier (and therefore perhaps lead to bed-wetting in some people.

In the end, remember that YOU are the one taking the medication and not your doctor. If you do not find a workable solution to the bed-wetting, let your neurologist know that the bed-wetting is unacceptable to you. Seizure control is important, but I'm sure your doctor wouldn't be too comfortable wetting the bed every night!

 

[Nakamova]

They may not have automatically checked your blood sugar, so worth asking about...

Urinary incontinence is a less common Topamax side effect, but sounds like that's what's going on for you.
http://www.livestrong.com/article/54656-topamax-effects-bladder/

 

[TongueTied]

-can you adjust your medication dosing so that you take less at night so you are more apt to wake up when you first notice needing to urinate

Most of my medications are already dosed so that I take a larger amount in the morning. Keppra is the only AED that I take even amounts of.

-get one of those bed-wetting monitors that are supposed to help wake people up at the first signs of urination (designed for young kids, I think, but who cares: if it works, it works)

Me and mum spoke about this, I tried that when I was younger (around 9yrs) and it made me too tired throughout the day which caused me to have more seizures. It was made harder by the fact that I find it difficult to move first thing when I wake up (cerabral palsy causes stiff muscles), so by the time I was able to move myself to the toilet it was already to late. I am going to give it another go though.

-if you have some idea when you wet the bed (ex. do you wake up in the night at a fairly consistent time noticing the bed is wet) set your alarm for an earlier time than that so you can get up and go to the bathroom. This might take some trial and error to find the best time to set your alarm.

I don't know that it's happened until I wake up in the morning, I sleep right through it. I've tried setting an alarm (I set 3 alarms actually), and I got up for each one but I still woke up wet

Do you take any other medications? For example muscle relaxants affect all muscles including those around the bladder, etc. and can make urination easier (and therefore perhaps lead to bed-wetting in some people.

I take Valium (diazepam?), Cymbalta and Paxil (as well as the AEDs). But I've been on Valium for years and I've never really had any trouble with it.

 

[TongueTied]

They may not have automatically checked your blood sugar, so worth asking about...

Urinary incontinence is a less common Topamax side effect, but sounds like that's what's going on for you.

I see my dr tomorrow morning so I'll make sure I ask about my blood sugar levels. Thanks for the link!

 

[valeriedl]

I was on Topamax a few years ago and started loosing weight like crazy shortly after being on it. My mom had to force me to eat because I wouldn't. And what I did eat were nothing but crackers and a peanut butter and jelly every so often. I don't remember how much weight I'd lost on it in a short amount of time but I was sickly looking. We called the neuro and he took me off of it immediately. I started eating again after that.

 

[masterjen]

Most of my medications are already dosed so that I take a larger amount in the morning. Keppra is the only AED that I take even amounts of.
Me and mum spoke about this, I tried that when I was younger (around 9yrs) and it made me too tired throughout the day which caused me to have more seizures. It was made harder by the fact that I find it difficult to move first thing when I wake up (cp causes stiff muscles), so by the time I was able to move myself to the toilet it was already to late. I am going to give it another go though.
I don't know that it's happened until I wake up in the morning, I sleep right through it. I've tried setting an alarm (I set 3 alarms actually), and I got up for each one but I still woke up wet
I take Valium (diazepam?), Cymbalta and Paxil (as well as the AEDs). But I've been on Valium for years and I've never really had any trouble with it.

Sounds like you've tried a lot of things already! I hope you come up with something that works for you. Wishing you the best

 

[TongueTied]

So I had an appointment with my GP. I had told her about what was going on before I had bloods taken so she made sure they checked out my blood sugar levels, which came back perfectly fine. So I'm guessing that it is the topamax.
It just kind of puts me in an awkward spot. I like the control of my seizures that topamax has given me and I'm kinda running out of other seizure meds to try or re-try. But I really hate the bladder problems it's giving me. I'm not really sure what I'm going to do.

 

[valeriedl]

Have you every been told about the VNS?

I had a heck of a time with meds when I was first diagnosed. They either didn't help much or at all or the side effects were too bad. My neuro suggest trying the VNS. I'm still taking meds since I've gotten one, at not nearly as high as dosages. I am also still having seizures since I've gotten it but not as many and they aren't as bad.

It's something that works great for people, even better than me, for others it may work the same or not at all. It's just something you'd have to try to find out.

Once you get one however it can't be removed and you are unable to have an MRI.

 

[TongueTied]

Have you every been told about the VNS?
....
Once you get one however it can't be removed and you are unable to have an MRI.

We've talked about the VNS quite a lot as maybe a better solution then meds. It's still on the list of things that I can try. At this point in time it's not near the top though, main concern that once it's in, it's in which rules out MRIs. I still have MRIs pretty often (scarring and cerebral palsy, when I had the stent placed etc), plus I'm pretty prone to infections after surgery and end up taking months to get over them. My neuros still pretty keen that we'll find a balance somehow between the meds and the side-effects, but I'm getting pretty cynical after 20years :? Hmmm