Learned More about Tegretol today.....

[epileric]

Had a new neurologists appointment today. I was thrilled because it was supposed to be at the end of March but someone cancelled so they got me in really quick.

So far he seems pretty great. He sent me for a million tests to make sure that my Carbamazapine (Tegretol) isn't effecting me too adversely.

What I learned today was that Tegretol has been found to create osteoporosis & that recently it has been discovered that Tegretol can increase cholesterol. He suggested I use a calcium supplement as well as a vitamine D supplement (since Vit. D levels can also drop when taking Tegretol)

I was thrilled to find out (as well as get the tests) & felt it was something I had to share for all the other Tegretol users here.

[Nakamova]

That's great Eric. Nice to hear about a neurologist that's on top of things.

[epileric]

It is great!

I'm just a bit still suspicious though because I'm not used to it lol.

[Elsie]

Nice that your Dr. told you about this. Mine never did. I was on Tegretol for years and years. I have osteoporosis pretty badly. Today in a dressing room I noted the slope to my back getting worse. I take calcium every day but it doesn't seem to be helping. I had lots of side effects on those bone building meds so don't take them. I didn't know about the vitamin D. I suppose the same things are true of trileptal.

[sah313]

Hi epileric, it will be worth keeping an eye on your cholesterol and blood pressure regularly (about once a month), when i was taking tegretol they both shot up all of a sudden after 6months and I had to take 4 extra tablets a day to counteract the effect which didnt mix well with the tegretol. I dont think it happens to everyone though so fingers crossed it wont affect you. Take care, Sah

[RobinN]

Odd - Rebecca tends to have high cholesterol, and Tegretol was the first med that they prescribed.
Silly doctors.

[Endless]

I'm really glad you brought this up, Eric.

In my opinion, everybody should have their D checked a couple of times a year when on anti-epileptic drugs. Any anti-epileptic drug. The symptoms of low D can be pretty subtle. Or not subtle, if it's been low for awhile.

I was on Trileptal and now I am on Lamictal, and was I was pretty shocked when my PCP found my Vitamin D levels had plunged (lowest at 7, and the normal is 30-100. serious deficiency is below 10). And this is when I was taking 100 IU a day supplement. Before that I had been on the low side of normal before anti-epileptic drugs, but still okay.

If my PCP hadn't checked it during some routine blood tests, I'd still way below normal. At the time I was feeling terrible - moods all over the place, shooting pains in my bones, and my blood pressure was a lot higher, with fluxuations up and down. It was a weird kind of nervous feeling that bugged me the most. I've been on 50,000 IU (prescription) for a couple of months now, and am starting to feel better.

I guess the point is that Vitamin D affects your cardiovascular system, bones, neurological, and immune system. It's important. And it's so easy to fix.

P.S. No doctor told me low D is a side effect, either.

[cjole]

Just a note, especially for those of us who live in regions where day-light changes during winter hours. My PCP told me that during the winter months, we tend to not get enough vitamin D as the sunlight is an important supply for it. She also told me that during winter months, bouts of depression are increased also because of lack of vitamin D. Where I live, and with the hours I work, I rarely see the sunshine. I get up to go to work, either night shift or day shift, it's dark. I get off work, it's dark. I go to bed, it's dark. I had some very bad depression going on last winter, and she told me that was likely a contributing factor. Even with day-light savings, our day-light is very short lived in the winter. It's dark until about 8 am, and the sun starts to set about 4 PM. Only leaves about 8 hours of daylight versus summer time when the sun rises before 6 AM, and doesn't set until around 8 or 9 PM. Big difference! Just a thought.

CJ

[momof3boys]

I found this out a couple of months ago from the new dr that I am now seeing. I take a vitamin D/Calcium pill in the morning and at night. I also take a Vitamin B Complex in the morning.

[trillium]

I took a printout of info about teg and cholesterol to my gp a year or so ago, just so that he knew. I'm not on chol. meds (yet) but I am on 2 bp meds. I've been on teg for 31 years, I think it's only a matter of time before I end up having to switch- hate the thought of switching, hate the thought of being on it. But, I hate the thought of seizures more so the tegretol is currently winning and I take my 900mg per day.