COPING SKILLS
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 Coping with High Dosages of Tegretol

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by Richard Clement

Tegretol seems to be tolerated to wildly different levels according to the individual, but I will offer my experiences & suggestions. Dosage should be increased as slowly as possible under the circumstances, at least until you fully understand how the drug is affecting you & how long it takes for you to cope with the changes. I lived what I regarded as a normal life on up to 1200-1400 mg/day (the maximum recommended dosage normally being 1200). I could drink alcohol, drive a car, work & live "normally". I had a slight skin rash but this didn't cause any distress or problems & developed badly bleeding gums. On dosages up to 1600 I had to be very careful about alcohol & the potential for drowsiness when driving. Slow increases up to this level were no great problem though, but large increases in dosage would make me dopey, irritable, sort of nauseous but without actually getting sick - just kind of "shitty" feeling, also constipated for a while (but that went as my body acclimatized, as did most other side effects). Perhaps the worst thing though when I increased the dosage fast was a cross-eyed state. My left eye would be looking straight ahead but right (the TN side) would be looking left. This was very disconcerting & caused problems for walking & co-ordination etc. The shitty feeling would always accompany the cross-eye, & I would get minor involuntary shakes in my hands as if caused by a mild electric shock.

Most of these effects would gradually wear off up to around 1800-2000 per day as my body adjusted, but I had to be ultra careful with the timing of when I took the Tegretol & this became an obsession. At dosages in excess of 1600 mg/day for any sustained period life wasn't "normal" & I wouldn't go up to that again except to tide me over while waiting for surgery. Apart from the side effects I also had the increased pain level to cope with. At 2000-2400 mgs life simply wasn't worth living, what with the combined effects of excruciating pain & nightmare existence under the influence of the drug. I can't go back to that - at any price.

The more food I ate the better I could cope with the pills, but it caused weight gain to some extent. But food of any kind certainly "soaked up" the Tegretol & helped me to cope with the pills. For me this was a problem though because eating & salivating triggered the pain! Sods law! I used to take my pills about an hour or so before eating, to give them time to take some effect, thereby hoping to reduce the pain in time for the difficult time of eating. So learning how to time the pills in relation to the onset of pain & any triggers was very important for me.

You may think that I might have been popping pills excessively, but nothing could be further from the truth. I actually constantly minimized the dosage to match what was a barely tolerable level of pain. In this way I hoped to detect significant triggers. I don't believe in popping pills & was very resistant to people encouraging me to take more in order to reduce the pain. Very high dosages must surely do some damage to the body's systems. But your body will "tell you" if it can't cope adequately. That is why you have to try your utmost to increase the dosage slowly, in order to give the blood etc. time to adjust. And it does adjust, but only up to a point. But patience, & above all perseverance, is important in giving your body the chance to acclimatize to the chemicals whizzing around inside you.  

With Tegretol (& I guess any drug that is to be taken in large doses) a base line blood test should be conducted right at the start & on-going monitoring undertaken to ensure hidden adverse effects are not taking place. I have found that the literature recommends this but that many doctors don't bother to do it. For your own sake I recommend that you strongly query the effects (especially long term) of any drug with your physician & get yourself monitored.