i weigh HOW much? (Tegretol)

[Loopy Lou]

Ok since I started Tegretol I'd noticed that I was pretty bloated and my clothes were tighter, so i weighed myself and is put on 14lb in about a month. I was horrified and redoubled efforts with getting more exercise and eating less. The next month, feeling more positive, I found I'd put on another 14lb!

A couple of months on and the only clothes that will fit me are my gym clothes. I don't see what else I can be doing at the moment. I mean, over this weekend we've had a lot of stress in the family. I've barely eaten or slept and STILL put on a couple lb!

Is this likely to slow down at any point? I am not a person that can allow myself to get any heavier! I have my epilepsy review with my gp on the 9th Sep, think it might be something I bring up. I just want other peoples opinions who have been on Tegretol.

 

[Trinity]

Well I was on tegretol as a child but I don't think I put on any significant weight (i'd have to check with my mum). I was never overweight that is for sure (although I am VERY overweight now as an adult). I'm on Epilim now (sodium valproate) and that causes weight gain. I think that quite a number of AEDs do unfortunately. Hope you find a solution.

 

[Nakamova]

Unusual weight gain is listed as a "severe" side effect of Tegretol. Have you mentioned it either your regular doc or your neuro?

 

[Loopy Lou]

Oh, I didn't notice it was on the severe list. Wonder why that is? I also get the confusion and forgetfulness, extreme thirst and swollen feet and legs. Last time I went to see the doc he ordered full blood tests but apparently they came back fine, so I left it at that. That was a couple months ago though so I never mentioned the weight gain.

All I want to do is sleep but I'm still dragging myself out walking and swimming =\ might get the package insert out and have another look at it

 

[CQ:)]

I've been on Tegretol for 9 years & I haven't noticed any weight increase with the Tegretol. But a friend of mine who also has epilepsy was once telling me about an AED which made her put on weight & I'm pretty sure it was Tegretol.

 

[Loopy Lou]

The only good thing about it so far is that it seems to have evened out the kepprage lol. I'm thinking it must be the Tegretol because I'm still exercising and eating as I did before I started taking it. Well, exercising even more and eating even less since I noticed the weight piling on.

Hmph... tempting to give up eating and live on fresh air lol (jk!)

 

[momof3boys]

I was on Carbatrol (another form of Tegrotal) for a long time during my teen years. I recall gaining alot of weight on it. I was in the 7th grade when my weight got to it's highest!.... 183lbs! I felt terriable, and my primary care dr said it was more than likely due to hormones during the age period. But when I look back now, since being taken off the Carbatrol in March of this year, Ive lost weight since then. So I think all that weight gain was due to the Carbatrol. I even went on starvation diets as a teen trying to lose the weight. I know, bad Idea, but at the time I was desperate to lose the weight.


I would for sure check with your neuro about the weight gain.

Good Luck sweetie!

 

[Elsie]

I was on Tegretol for many years. I am on trileptal now, but unable to get off or keep off the weight I put on those years. But I am having more problems with weight gain with the trileptal. Last year I counted calories religiously and I must be at 1000 cal/day with exercise to lose 1 lb/week.

I also get puffy ankles, and have had that problem on mysoline, trileptal and tegretol. Be sure to tell your dr., and make sure it isn't something else causing fluid to back up in you.

 

[Loopy Lou]

Yeah, when my doc did the blood tests he also checked for kidney function because of the fluid retaining and puffy legs and stuff but it came back normal. At the moment I'm trying to stick to 800 calories a day but I'm pretty sure that's not healthy considering I'm 5 foot 10. This is the heaviest I've ever been in my life and that's a pretty depressing thought.

Hopefully my doc will have some answers for me. I can't even tell for sure that its reducing my partials as I live on my own, so unless I've obviously missed something or done something daft then there's no-one here to tell me if I've "spaced out"

 

[Bluesbrkr]

I'm on Lamictal and Trileptal and have been struggling with weight gain since I started them. I followed a good protein powder / small snack type program and went from 227 down to 212, but got stuck there... now, of course, it's coming back (up to 218). My normal weight is about 195, which I had been at for a good 10 years up until I started the meds.

Seems like the Trileptal caused it more than anything. Was on Vimpat before, and didn't have as much problems weight wise, but other side effects which caused me to switch. Guess I should ramp up a good exercise program, but TOO tired all the time. thanks meds! great cycle to be stuck in.

 

[qtowngirl]

Loopy Lou,
Unless the tegretol has kept you seizure-free for a very long period of time or something, say five years (and from the looks of your profile it hasn't), who's to say you have to stay on it? Weight gain like that is too unhealthy; and you can't be doing things like rationing yourself to 800 calories a day, my dear that itself will cause problems, incl. emotional issues. We can't starve ourselves out of fear from the meds, got enough on our hands =( It sounds like your doc appt. is at the right time.
I have been on it myself for eight years and never had a problem, but everyone and their metabolism is different, if it's affecting you this 'severely' as Nakamova said, it doesn't sound like it's for you. Scary for the health to say the least.

 

[Loopy Lou]

Yeah, I know you're right really. Tegretol is the third med I've tried that doesn't agree with me, so I'm not too enthusiastic about trying yet another one. Along with Keppra I've also tried lamictal and Vimpat.

Hmm...

 

[Meetz1064]

I have to

agree with the med change thing Lou. It sounds like Tegretol is having a major side effect for you that just is NOT tolerable. Seriously, I had that same issue years ago--but it was a result of a combination between Depakote and Lamictal. I ended up ballooning to 350 pounds. Now mind you, I am 6 foot tall, but I don't have a body built to handle 350 pounds.

When I couldn't move my toes, much less really hold a pencil, I threw an unholy fit at my neuro.......and made him REALLY LOOK at me. THAT'S when we changed.

For some, the miracle drug is Tegretol/Carbatrol. For others, it's Dilantin. Who knows what yours may be. But your neuro is gonna have to do SOMETHING.

And no matter what, keep exercising....it WILL help in the long run!!

 

[Loopy Lou]

I suppose its upsetting me so much because I've been trying so hard at losing weight, and it was working. I even worked up the courage to start going swimming again (with a friend who knows about my seizures of course).

I'm not going to post how much I weigh, but its enough that none of my clothes fit me apart from my gym clothes. Just as I'd bought a new, smaller wardrobe too.

Hopefully whatever the next med I try is, it'll work with few side effects =\

 

[qtowngirl]

Good morning Loopy Lou,
Wondering if you've tried topamax? (K everybody don't throw things at me). Pretty much guaranteed to not cause weight gain, even loss in some cases, and is usually prescribed for generalized as well as partials. It worked for me for two years with no side effects so opposed to majority of what you hear, I'm all for it. I did get the 'dumbs' after two years when my dose was doubled but that's straightened itself out too. All in good time, right?
If your acute issue is seizure control with no weight gain, topamax would be the first thing that comes to most doctor's minds; would be worth asking about. I know when I met a new neuro for the first time I made suggestions about what I thought we could do with meds, dosages, etc. and she obliged. The right doc wants to be sure you're comfortable too, and obviously you're not, so lay it down girl! I'm not happy and I want to make changes, today! (haha, sorry, but unfortunately that's how through trial and error we have been forced to act). Hope it works out for you, have a great day =)