Back from neurologist

[Loopy Lou]

Hmmm.... i seem to have more questions than i do answers.

My neurologist is insisting that tegretol can't possibly cause weight gain, and so i'm stuck trying to shift all this that piled on funnily enough, just after i started tegretol. onder: I've decided i either need to give up eating or just quit tegretol on my own and see who's right about this one. If i remain a big fatso after stopping the carbamazepine i'll hold my hands up and say "ok, fair enough".

He was a bit concerned about my sleepiness but again said that it's unlikely to be the Tegretol and is going to request that i be referred to a clinic who can see if it's something to do with my breathing at night. He asked me if i snored to which i replied not as far as i know, unless i have a cold. I'm not going to hold my breath though, normally nothing comes of any referrals. He's changed his mind about me seeing a neuropsychologist though, i think this may be because the tegretol is actually working.

Soooo.... less seizures, or feeling human? It's a tough choice to make.

I might stick out the tegretol until i get an answer from the sleep clinic. But that could take a long long time.

Hmmm trying to think of anything else he said now... This is why i take my mum into the room with me lol!

Edit - just read that back and lol at "not going to hold my breath". Unintentional pun!

 

[RunningGirl85]

I can't say much about the other issues, but I did I find some webpages that said Tegretol DOES cause weight gain:

http://www.epilepsy.com/EPILEPSY/NEWSLETTER/SEPT09/AEDS#zonisamide (this was written by an epilepsy specialist). I read it in other locations too, so I don't think you're off in stating the tegretol has caused you to gain weight. My neurologist also said that my terrible sore throat wasn't likely caused by Keppra, and I know it was because it only hurt within two hours of me taking the pills (and felt better once I switched over to the brand name instead of generic).

I think sleepiness is a possible side effect of almost ALL of the AEDs, and that I DID hear from my neurologist/regular doctor/and various other sources.

Good luck and I hope you get it all figured out!

 

[CQ:)]

hi Loopy,

I think your neurologist is wrong about the Tegretol not causing your weight gain. There have been quite a few posts on here from people saying they put on weight after taking Tegretol.

Hmmm trying to think of anything else he said now... This is why i take my mum into the room with me lol!

My Mum also comes into any of my neuro appts, she likes to know what's going on & 1/2 the time I usually forget what the neuro said just after I leave the room lol. I write down what the neuro tells me when I am in with him but usually I only write down any med changes that happen & not the other stuff he tells me lmao.

I hope you don't have too long of a wait to get to the sleep clinic & don't get stuffed around too much.

Good luck.

 

[Loopy Lou]

Well, he said that the sleep clinic is something that i "really need to get checked out" but that could mean i could have an appointment in a few weeks, a few months or a year. I hate uncertainty. Well, the neuro will have to send a letter to my gp, my gp will have to look into it and decide whether or not to refer me. That alone could take about a month.

Thanks for the luck, i have a feeling i'll be needing it! I have another test for something unrelated coming up on tuesday too, that will be fun >.<

 

[Nakamova]

I agree with above, Tegretol DOES cause weight gain and sleepiness, so your current neurologist needs a dopeslap. On your behalf, I say AAAARGHHH.

And I hope you can get a speedy referral to the sleep clinic. Your neuro probably thinks you have sleep apnea. Even if you don't, it's not a bad thing to rule it out and make sure your sleep is otherwise okay.

 

[Loopy Lou]

Sleep Apnoea! Yep, that's what he mentioned, thank you!

Had a total mind block about what he said lol. Mind you, it could be a perfect chance to also discover if i'm still having seizures in my sleep.

I've never had to stay a night in a hospital before, i've only ever been for day surgery and to A&E. Nervous is not the word, but i suppose there's no point worrying about it yet until it comes up.

 

[acpollard2010]

i always take my wife or mom with me b/c i forget what he is sayin partly its bad news and im doin everything in my body from hitting him and also not havin a seizure.but the sleep thing i would call and call your gp until they can fit u in sooner.and the hospital i cant say anything about england but in the u.s. it really sucks but not scary just lonely.

 

[Loopy Lou]

No chance of getting lonely in one of our hospitals, there's generally about 12 beds in a room =/

Here's hoping i can even get to sleep with the sound of everyone else snoring!

Speaking of snoring, its waaaaaaay past my bed time and i need to get some shut-eye before i fall over lol.

Oh yeah, while it's just popped into my head he said there was something else that could be causing the sleepiness. Unfortunately the only words i can recall him using were idiopathic >blank< somnolence. Shame those two words mean pretty much nothing without the middle word =/ Damn i should have got him to write it down. I soooooo fail at being a good "patient" (although i know what idiopathic and somnolence means obviously)

 

[Nakamova]

He might have said "idiopathic hypersomnolence". If so, that would be kinda useless, since that's just a description, not a diagnosis. Might as well have said "you're sleeping too much and I don't know why."

There's a little about idiopathic hypersomnolence/hypersomnia here: http://www.drugs.com/enc/idiopathic-hypersomnia.html

 

[Loopy Lou]

Might as well have said "you're sleeping too much and I don't know why."

Well, it would certainly go along with "you have epilepsy and i don't know why" and the newest one "Your hormones are totally out of whack and we don't know why"

Hopefully i'll get an answer to that second one on tuesday lol. I'm the sort of person that would quite like answers lol!

Thanks for the link, i shall go have a look at it.

 

[Loopy Lou]

"treatments include Amphetamine and Ritalin"

It'd be just my luck that i've never ever taken any sort of illegal drug and then i ended up being prescribed Amphetamine :roflmao:

Anyhoo i'll have to wait and see if i even get the sleep study before worrying about stuff like that lol.

 

[drarvindr]

Carbamazepine causes some weight gain , but you have to define how much. 0-5 kgs ( upto 10-15 pounds) can be explained by the drug , but anything significantly more is unlikely to be the drugs' fault alone ( probably something else going on too - maybe endocrine ?).
Drowsiness is a common side effect of almost all the AEDs.The point you make regarding choosing "human" vs "seizure free" is well taken , and it is a difficult choice. Personally i feel it would depend on many factors , like how much sleepiness occurs, does it affect your function during the day , are there going to be repercussions from work etc. If so , i think switching over to another drug may be warranted , rather than waiting for you to get frustrated by the sleepiness and stop your pills on your own ( i have done this and had 2 seizures because of it - not my proudest moment)

As far as the sleep apnea is concerned , its easier to diagnose for someone sleeping next to you. if you snore a lot and have long pauses between snores with no breaths whatsoever , its almost definitely sleep apnea ( especially in thick-necked people ie neck circumference of > 15-16'').
hope this helps
arvind

 

[Loopy Lou]

Hi there! Not seen you around for ages!

Thanks for your input. I would say my amount of sleep is definitely excessive. I've even fallen asleep at work a couple of times. Generally it's anywhere between 14-18 hours a day and thats when i'm drinking coffee! As far as i know i don't snore unless i have a cold.

I'm only working 16 hours a week and struggling to do that. I'm really not earning enough money though so i'm a bit stuck.

I have an urge to go measure my neck now lol

 

[Krista2882]

I'm pretty sure Tegretol caused my weight gain... I was on Tegretol first, but Keppra was added after a few months, and then the dosage increases of both meds were kind of alternated, but I remember having gained weight, and then Keppra was increased and I lost some of the weight, and then Tegretol was increased and I gained more weight... But then I read that Tegretol doesn't cause weight gain, so I thought I had the order of the weight gain wrong and that it was probably Keppra.
Then I went away to school and at the same time I'd gone down a bit on my Keppra dosage. I ended up losing 15 lbs. So I assumed that the Keppra was what had caused me to gain weight. Then I finished that program and went back home and gained all the weight back again! I think my lifestyle changed enough for me to be losing that weight and it wasn't related to the Keppra decrease at all... so I still think it was the Tegretol that caused my weight gain. I'm going to try to come off it soon. I'll let you know if I start losing weight.

 

[RunningGirl85]

Krista, I hope it wasn't the Keppra - that's what I'm on right now! So far it hasn't caused me to gain any weight and I've been on it for nearly a month, and it's the only medication I'm on. If anything, my appetite has decreased a bit, though my weight hasn't changed (I also haven't been exercising as much because I haven't been feeling great). But I know everybody reacts differently to medications.