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Old 05-01-2010, 12:04 PM   #1
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strange side effects to tegretol

Hi there. I'm new here so I apologize if this type of thread has been made before.

I was diagnosed with Epilepsy a little over a week ago. I've been having complex partial seizures for three years now that doctors just told me were abnormal migraines, but having finally seen a neurologist and had many tests we've gotten it figured out.

Problem being.. My neurologist prescribed Carbomazepine. 600 mg a day. He told me to start slow, so i began with 200 mg a day, then switched to 400 mg a day after 3 days or so. I haven't gotten to 600 mg a day yet because of the strange effects it's having on me.

It's as if it's reducing the symptoms/severity of my seizures but increasing the frequency. When I had a seizure before the medication, I would get a quick sort of feeling telling me it was about it happen. My right leg and arm would go out/become terribly weak all of a sudden. Then i'd go into extreme deja vu and the other general symptoms of a complex partial seizure. Now while on 400mg of the meds, Every 2 or 3 minutes for the past 5 days, i've been getting the beginning of the seizure, the feeling of it coming on, and my right side of the body becoming majorly weak. I'm also exhausted by all this, I've been having 2-3 naps a day, sleeping in, and going to bed really early. I'm not sure if this is normal and should go away in it's own time or if I'm having a bad reaction and should call my neurologist to switch medication. Is this normal? I can barely leave the house, let alone walk around the apartment. It's really inconvenient and destressing.

 
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Old 05-02-2010, 08:48 PM   #2
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Re: strange side effects to tegretol

Hello,

The first med the Dr. had me on for my seizures was tegretol back almost 20 years ago. I remember it was the end of summer when I went on it and I ended up quitting school for a year (I was 17) because I was falling asleep in classes and teachers were having a difficult time waking me, I was coming home from school and going straight to bed, getting up to get a bite to eat and drink, going back to sleep, getting up for school and falling asleep in class...nothing productive going on in my life for a few months. I was in and out of the Dr.'s office getting iron checked, on vitamins etc. but it was just the tegretol. I also had complex partial seizures while on tegretol, but I honestly can't remember if they got worse when I first went on it, I know they were never controlled and I know that I really noticed them more when I was on it than when I wasn't.

If you are worried though, give your Dr. a call, it may put your mind at ease.

Good luck,

heyloe

 
Old 05-08-2010, 12:35 PM   #3
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Re: strange side effects to tegretol

Quote:
Originally Posted by ellied View Post
Hi there. I'm new here so I apologize if this type of thread has been made before.

I was diagnosed with Epilepsy a little over a week ago. I've been having complex partial seizures for three years now that doctors just told me were abnormal migraines, but having finally seen a neurologist and had many tests we've gotten it figured out.

Problem being.. My neurologist prescribed Carbomazepine. 600 mg a day. He told me to start slow, so i began with 200 mg a day, then switched to 400 mg a day after 3 days or so. I haven't gotten to 600 mg a day yet because of the strange effects it's having on me.

It's as if it's reducing the symptoms/severity of my seizures but increasing the frequency. When I had a seizure before the medication, I would get a quick sort of feeling telling me it was about it happen. My right leg and arm would go out/become terribly weak all of a sudden. Then i'd go into extreme deja vu and the other general symptoms of a complex partial seizure. Now while on 400mg of the meds, Every 2 or 3 minutes for the past 5 days, i've been getting the beginning of the seizure, the feeling of it coming on, and my right side of the body becoming majorly weak. I'm also exhausted by all this, I've been having 2-3 naps a day, sleeping in, and going to bed really early. I'm not sure if this is normal and should go away in it's own time or if I'm having a bad reaction and should call my neurologist to switch medication. Is this normal? I can barely leave the house, let alone walk around the apartment. It's really inconvenient and destressing.

 
Old 05-08-2010, 12:40 PM   #4
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Re: strange side effects to tegretol

Hi, Are you on Tegretol or a generic? The carrier in the generic causes decreased efficacy. You also have to give your body time to adjust. I have been on Tegretol since age 8 with various combinations of other meds. There is no quick fix. Try to be patient and give yourself a break! Good Luck.

 
Old 05-11-2010, 05:17 PM   #5
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Re: strange side effects to tegretol

It can take (on average) 21-26 DAYS for Tegretol to reach a stable level in our bodies. I'm surprised at the rate of increase.

I can't remember the rate they brought me up at (30 years ago!). However I do recall when they made changes it was more along a line of adjust by one tab per week. One tab being the 200mg's.

I'd call the doc and let him know the situation you are in, and ASK if you can try a slower introduction of the medication.

My "pre-cursor" of my seizures was similar to the sensation you described, but didn't effect any limbs. I'd have what I call an "electric feeling" in the body (like having electricity run through you, but NOT getting a shock) and it would be accompanied by the start of a ringing in my ear (usually only one) before the seizure could onset.

As for the dose, I only WISH I could have been on that low of a dose. They had me on 1200-2200mg/day. Usual dose was 1200-1600 over most of the time I was on it.

Continue to keep a log of the symptoms, seizures, and medication changes/adjustments. Find what works for you. In the past I used a pocket calendar. Now I use a hand held computer that syncs with my desktop, so the entries end up on both locations.

Hoping the symptoms/seizure situation improves for ya.

--Travis

 
Old 05-28-2010, 12:39 PM   #6
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Re: strange side effects to tegretol

Quote:
Originally Posted by Travis from MN View Post
It can take (on average) 21-26 DAYS for Tegretol to reach a stable level in our bodies. I'm surprised at the rate of increase.

I can't remember the rate they brought me up at (30 years ago!). However I do recall when they made changes it was more along a line of adjust by one tab per week. One tab being the 200mg's.

I'd call the doc and let him know the situation you are in, and ASK if you can try a slower introduction of the medication.

My "pre-cursor" of my seizures was similar to the sensation you described, but didn't effect any limbs. I'd have what I call an "electric feeling" in the body (like having electricity run through you, but NOT getting a shock) and it would be accompanied by the start of a ringing in my ear (usually only one) before the seizure could onset.

As for the dose, I only WISH I could have been on that low of a dose. They had me on 1200-2200mg/day. Usual dose was 1200-1600 over most of the time I was on it.

Continue to keep a log of the symptoms, seizures, and medication changes/adjustments. Find what works for you. In the past I used a pocket calendar. Now I use a hand held computer that syncs with my desktop, so the entries end up on both locations.

Hoping the symptoms/seizure situation improves for ya.

--Travis
^^This

I take Tegretol, the Generic, and it is by far the best of the others I have taken. Once it gets in your system and at the right levels, it should work.

Trust me, many of the others are rough on you, you don't want them unless you have to have them so stick this out for a couple of weeks and see what happens

 
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