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How much tegretol is too much?

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Old 12-08-2004, 07:31 AM   #1
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Kramer_DU HB User
Question How much tegretol is too much?

I take tegretol for partial complex seizures and my doctor just uped my meds. I'm taking 1,000mg a day. 2 pills in the morning and 3 at night. Does anyone else take that much tegretol? I sure hope this dose works because I'm tired of going a month with no spells, then all of a sudden having 5-10 in a day.

Last edited by Kramer_DU; 12-08-2004 at 07:32 AM.

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Old 12-08-2004, 12:33 PM   #2
Join Date: Oct 2004
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DianaF HB User
Re: How much tegretol is too much?

I take Carbatrol, which is a long-lasting Tegretol. I take 2 in the morning and 2 at night. I was told I could take one more during the day if I need to.

It doesn't sound like it is a lot, but you would need to have a level drawn to see if you are still in the normal range.

Old 12-08-2004, 01:49 PM   #3
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bayou_girl HB User
Re: How much tegretol is too much?

You are taking ALOT of that drug. You will now, need to watch for signs of liver toxicity problems. The drug only goes up to 1200 mgs as the highest adult dosage.

I have taken all the Tegretol drugs with the exception of Trilpetal.

I have been on chewable Tegretol, Tegretol, Carbamazapine, Carbatrol, and Tegretol XR. I took 800 mgs of it and had serious problems the last 6 months I was on it. I was hepatically impaired, and neurotoxically impaired. It wasn't a good scene. My seizures were basically out of control for 8 months, making me too sick to do anything.

The seizures would go in spurts just like that. My epi told me that that meant that the drug was beining to fail and they needed to remove it, but at that point I was scheduled to have a VEEG done, and they left it two more week, snd removed it permanently when they were taking all my drugs away. I was also taking Neurontin, and Topamax. The Topamax has long since been removed, and I take Depakote now with the Neurontin, and no ill effects, and I even take 1000 mgs of Depakote, and 3600 mgs of Neurontin, which is well over the normal adult dosage that lies between 1800-2400 mgs.

I have moderate epilepsy, and it is far from being controlled. I have 2 1/2week seizure-free periods when I am not sick like I am now. I am having them every few dasy, becasue I am taking a high powered anti-biotic etc.

Seizuers will come and go like that nomrally. I would say from what I know, to not really worry about it, but I WOULD worry about that Tegretol level. It is too high for my likes.

-Absence Myoclonic PLUS MTLES
-On Depakote ER-1000 mgs Neurontin-3600 mgs

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Old 12-08-2004, 07:51 PM   #4
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tkdmom96 HB User
Re: How much tegretol is too much?

Hi Kramer,

I need to add my 2 cents worth. I understand the above poster has a medical background in this area, but from a layman's point (who has dealt with this for the last 16 years as a parent and exposure to neurologists and Epi's), everyone IS different when it comes to the handling/threshold of meds.

Our daughter was 12 and was on 1,000mg (may even have been 1200mg) of Tegretol at a weight of about 115 pounds or so). She was on Tegretol for all of those 12 years (diagnosed at 9 months), with mixed results of control (Complex Partial and Simple Partial seizures). The medication ranges are just that, ranges set by doctors after finding what works best for "most" patients. Since everyone is different, sometimes (and quite often) a med dose can be inched up (with doctor's supervision) as long as there is no toxicity or bad side affects. (blurry vision, stumbling, speech problems, headaches, jitters, etc.)

It does at times, also indicate that the higher the dose, the med may be losing its effectiveness. After 12 years and the onset of puberty, Tegretol just stopped working for Katie. We then tried the Carbamezapine, TegretolXR, and Carbatrol, all in the same "family" of meds. No luck. Moved on to Depakote, Neurontin, Keppra, Lamictal. All within a 4 year time span. That is when we reached the end of our ropes and looked into surgery.

One year of medical testing, 3 board reviews (that many shared with me here), Katie ended up having a Left Temporal Lobectomy. She had MTS, Mesial Temporal Sclerosis. A shrinking of the left hippocampus (in her case). That area was removed and she is on one AED (Lamictal-monotherapy) and seizure free since her surgery June 7, 2004.

Not everyone is a good candidate, but if you have Complex Partial seizures, it is worth investigating. It is the most amenable type of seizure, when it comes to surgery outcomes.

Keep an eye on how you feel on the med increase, have your liver enzymes checked (sgot and sgpt, back in the day...they have new names now, but the same thing), and your med levels monitored. Our daughter was on 3000mg of Keppra at the age of 13. I thought that was ALOT, but she did well and the range is higher for that med. They are all different. Also, Complex Partials are the most difficult seizures to control, according to our Epi, and if you fail more than 2 meds there is only a 10-15% chance that any other or new med will work. You may need to consider dual therapy as an option. We didn't want to do it with our daughter, but we had no choice there for awhile.

Take care and hope you feel and do well with the increase,
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

Old 12-10-2004, 11:13 AM   #5
Ron Helton
Join Date: Dec 2004
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Ron Helton HB User
Re: How much tegretol is too much?

I have been on tegretol for many years and recently put on Keppra also. Have had complex partial since 13. When I take tegretol I find that I need 8 to 10 hours of sleep or I feel like a slug and can't get motivated to do much. Ron

Old 12-10-2004, 01:05 PM   #6
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buliem HB User
Re: How much tegretol is too much?

Well since we are talking med increases I thought I'd chime in. My Patrick is on depakote. 1000 mgs a day 500 mgs morning and 500 mgs evening. Still having seizures in the afternoon/evening although I haven't noticed as much in the morning since the last increase. The neuro just called me with his morning blood levels. They were at 114. He should be in between 100-150. Strange that he's having seizures in the afternoon/evening when that's not even as many hours from his last dose and his morning levels are where they should be. Anyway now I have to add another 1/2 a 250 mg pill for one week in the afternoon and then go to a whole. The neuro says that if that doesn't work we will definitely have to add another drug. UGH! I'm really worried about his liver and his cognition, memory etc. As he is right now I'm not seeing how he'll ever be able to lead a normal life. I'm devasted.

Any thoughts or suggestions?

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