tegretol: report this to doc?

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imaayafa

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6 months ago, my husband--14 yrs after a traumatic head injury/coma--had a tonic clonic seizure and was put on tegretol for life. he has had no seizure since. during this time he has gained a lot of weight, he has huge boil-=like pimples frequently on his face and arms and sometimes on his chest, he is more emotionally volatile than previously, more tired, etc. (he was also put on b12, folate and multi-vitamin)
my questions are :
1) are these unusual side effects for which he should make a special trip the neurologist to report? (they don't take phone calls)
2) is there any way of minimizing these side effects?
3) he has memory problems and doesn't remember when he is supposed to go for another checkup. how often should someone on tegretol take blood tests and are there other tests they should also be taking?
thanks!!
 
I've been on Tegretol for decades & have all the side-effects you've mentioned to varying degrees so no, they don't sound unusual. I've always had bad acne & as a teenager I hoped to outgrow it. So much for that, however I'm at the point that my pimples are the only thing keeping me young lol.

I used to get my levels tested every 6 months but now that I've been on it for over 30 years I go once every year. I don't know of any other tests he should be going for re. the tegretol but be aware of stomach ulcers.

The only thing I've found that might lessen the side-effects is to not take it on an empty stomach. You're not supposed to anyway because of the effects it can have on the digestive tract but that doesn't always stop me when I"m in a rush.

I Know as a kid I had to get used to having a bad memory. Now I've learned to compensate with marking things in schedules & using various reminders for things but it's still a a pain.
 
I'm not on Tegretol. I'm on lamictal, but a lot of the same stuff applies. This is my 5th AED.

Usually doctors test blood serum levels at least every 6 months, unless there is a problem or you are ramping up on a new drug and then they test it more often. They also do a blood panel to make sure kidneys and liver are doing okay. Some docs also do an eeg, but not all.

I've either gained or lost weight on most of the AEDs I've been on. It takes extra awareness and effort to keep things steady. So far I'm failing at it. When gaining I've tried portion control, extra exercise, etc. And still gained. During times of weight loss I just don't feel like eating. Wish I had an answer for this one but I don't.

On Lamictal I'm getting those weird acne things, too. They are on my back & face, one was on my arm. It isn't severe enough or important enough to me to report it to my doc, but for some people it is. Only you can make that decision. I've ordered some ProActive. We'll see if that helps.

About half the AEDs I've tried affected my emotions. Keppra made me incredibly pissed off and almost zero impulse control, Topamax I was dangerously depressed, Trileptal severely depressed. The rest ok. Whether it is important enough to see your doctor early is up to you and your husband. How severe is it? Can your you and your husband live with it? If the answer is no, then go in.

I can't believe your doc doesn't take calls. I've never heard of that before. Instead of a call can you get in quickly to see him?

If your husband doesn't remember when he's supposed to go in for a checkup, I'd call and schedule one now anyway. Can't hurt.
 
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I took Tegretol years ago and didn't experience the weight gain or the boil-like symptoms. I did, however experience the mood swings. My dr. also did blood work every 6 months. I experienced low white blood count while taking Tegretol, which can in some cases lead to aplastic anemia. I would suggest you call the dr. and have your husband go in and have some blood work done and have a serious talk with this neurologist.
 
thank you everyone! i really appreciate hearing your stories and getting your thoughts. i guess it has been several months since they did any blood work so maybe i will just schedule an appointment, to be safe. it sounds like there are a wide-range of reactions to tegretol and that this is "normal", though i do certainly wonder what kind of reactions or deficiencies (perhaps ones that are not included in the tests) are happening in the body that would effect weight gain...skin...mood...energy... ? the meds must throw the body off kilter. but i guess its better to be off kilter than unconcious. (ok to make jokes here? what else can you do :)
 
Depression can cause all those things, too (except the acne). AED's are famous (or is that infamous?) for causing depression. AED's also suck the vitamin D out of a person's body, possibly causing a deficit. Vitamin D deficiency can cause all those things, too. Ask your doc to check Vitamin D as well as the B's along with everything else.
 
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thanks, endless, i will ask about the vitamin d. i thought anti-epileptic drugs were also anti-depressents? i have a friend who takes one for bi-polar...? i understand there is also a relationship between deficiency of vits d and the bs with depression....(doc already found him to be deficient in b12 and folate so he now takes that daily with a multi)...
 
imaayafa said:
i thought anti-epileptic drugs were also anti-depressents? i have a friend who takes one for bi-polar...?
Click to expand...

Many of the anti-seizure drugs are also used for bi-polar disorder (and other problems, like neuropathy). I have a nephew with a bi-polar disorder and he has tried some of the same meds I have tried for seizures for his problem.

When taking a medication like Tegretol, one should have a CBC every 6 months initially to make sure his WBC and electrolytes, etc., are in check.
 
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Cint said:
Many of the anti-seizure drugs are also used for bi-polar disorder (and other problems, like neuropathy). I have a nephew with a bi-polar disorder and he has tried some of the same meds I have tried for seizures for his problem.

When taking a medication like Tegretol, one should have a CBC every 6 months initially to make sure his WBC and electrolytes, etc., are in check.
Click to expand...
I now remember having low sodium levels with tegretol REALLY low, so much so my GP wanted me to limit my water intake. Thanks for bringing that memory up!:rock:
 
neilB said:
I now remember having low sodium levels with tegretol REALLY low, so much so my GP wanted me to limit my water intake. Thanks for bringing that memory up!:rock:
Click to expand...

Your welcome.

I had a really low sodium level while taking Trileptal, which is very similar to Tegretol in chemical make-up. I finally was taken off Trileptal, too.
 
I've been on tegretol for 30 years. Yes to the more tired... and the weight gain could be because, well if you see this link, tegretol can cause you to retain water- I was going to post a link to info on this, but this site wouldn't let me. Grrr.

Anyway... google tegretol and SIADH

I take a diuretic for this
 
I'd just like to add on a note about vit D, something my GP brought up to me last winter. I was having some very bad times, was in a very deep depression. In fact I missed a week of work cause I was "clinically depressed". Anyway, she told me that at this time of year (at least where I live) when the days become shorter and we have less sunlight, it can have an effect on the amount of Vit D that we absorb. And in my case, I work 12 hour days, I go to work, it's dark, I get off work it's dark, I go to bed, it's dark, I get out of bed, it's dark. The only time I actually see "the light of day" is on the days I have off. Makes for a very long winter, I must say!
 
Throw in some Vitamin B-6, too. From what I've read, it seems to be the all-star of vitamins. Vitamin B-6 is involved in critical functions of the nervous system. And it boosts the metabolism of various neurotransmitters which are needed for normal brain function.
 
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