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Hi. I am new to this board. Over the 40 yrs of my life, I have been on Phenobarbital and mysolin when I was a child, Dilantin and mysolin when I was a teenager.

I was then put on Tegretol...which seemed to work in my early twenties. Then the dosage got to be 1.5 400mg tablets, twice a day.

I have now been using novoclobazam with that also (10mg tablets, 2 at night, one in the day).

My partial seizures have almost stopped, but I am really doped up. I drink a lot of coffee to try to counter the effects. Do I have any other alternatives?

I always had partial seizures, or auras as they would call them. They ran all types of test during my childhood..types of food, sleep deprivation...but nothing consistently triggered them.

I have a job, and am married. Does anyone know if 600mg doses of tegretol is too high.

Michael

Comments

RE: New to board

Submitted by grez-monkey on Mon, 2005-05-30 - 14:27

Welcome to the group Michael. First thing you can look into is about the doses of tegretol. On one website page is the dosing and titration of tegretol. A portion of it lists that, 'The average maintenance dose as monotherapy for adults is 600-1200 mg per day.' [www.epilepsy.com/medications/p_tegretol_dosage.html] There is something else on this same webpage that you might want to bring to your doctor's attention, and the is "The extended-release forms, Tegretol-XR and Carbatrol, are often preferable for patients who have trouble with compliance and for those whose blood levels fluctuate widely throughout the day.".

There are alot more detailed information pertaining to tegretol, which starts at the introduction website. It is www.epilepsy.com/medications/i_tegretol_intro.html

I've had e for 18 years now and narrowed down that they nearly always occur roughly 6 hours after I've eaten a meal, or snacks. Because of it I have it set in my mind that my seizures [currently just simple partials] are being triggered by my diet and digestive tract. Overall, abdominal epilepsy. I found more information online and have worked with a more natural/organic diet form with positive results of lowered frequency and strength of the sps, plus a lowered bad cholesterol level. Caffine has also given me negative effects and results, so I lowered my intake of it.

Bruce

Welcome to the group Michael. First thing you can look into is about the doses of tegretol. On one website page is the dosing and titration of tegretol. A portion of it lists that, 'The average maintenance dose as monotherapy for adults is 600-1200 mg per day.' [www.epilepsy.com/medications/p_tegretol_dosage.html] There is something else on this same webpage that you might want to bring to your doctor's attention, and the is "The extended-release forms, Tegretol-XR and Carbatrol, are often preferable for patients who have trouble with compliance and for those whose blood levels fluctuate widely throughout the day.".

There are alot more detailed information pertaining to tegretol, which starts at the introduction website. It is www.epilepsy.com/medications/i_tegretol_intro.html

I've had e for 18 years now and narrowed down that they nearly always occur roughly 6 hours after I've eaten a meal, or snacks. Because of it I have it set in my mind that my seizures [currently just simple partials] are being triggered by my diet and digestive tract. Overall, abdominal epilepsy. I found more information online and have worked with a more natural/organic diet form with positive results of lowered frequency and strength of the sps, plus a lowered bad cholesterol level. Caffine has also given me negative effects and results, so I lowered my intake of it.

Bruce

RE: RE: New to board

Submitted by sarajane on Tue, 2005-05-31 - 16:54

Hello to everyone in E com. I'm also new here, I was diagnosed in June of '03,when I had a knock down sz at work. Woke up in a hospital, but didn't remember how I got there, my first med was zonegran which made me feel "thick" I took it for a week, but cuz my personality was stunted I stopped, much to the chagrin of my neuro who was upset about it. She changed my med to carbamezepine, which works great! Something weird happened to my large toenails though, it seems that they had started to seperate from the nailbeds , it was painless and one day one whole nail popped right off ! but since then they both grew in normally, I guess what I'm asking is if anything like this has happened to any one else ? I blamed the zonegran, the dr said it was nail fungus but the nails didn't thicken they just grew off. What do you think ? sarajane

RE: RE: RE: New to board

Submitted by grez-monkey on Tue, 2005-05-31 - 17:19

Welcome to the e.com board too sarajane,

Just a guess and idea for you. Since both of your toenails have come back and with your doctor's words, it may have been a fungus. Stay on your toe [lol] with this matter and hopeful the problem won't come back.

Bruce J