Question about medication levels for Tegretol

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sony12

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Hey there.

I have had epilepsy since I was fifteen (am in my mid 30's now) it is well controlled and I am very suffiecent about keeping up on my medication levels and taking my medicine.

I take Tegretol mainly and it has done a great job of helping me live a life without seizures ever since the beginning. It has been six years now since I have had a single seizure and I had one then because the doctor decided to take me off of Tegretol completely for awhile because he thought my medication levels were getting to high.

I know fluctuation on your levels is normal when you are taking generic and that is a big reason why I decided to go back to brand name medication because there were times I felt it was dropping so low that I was at risk of having a seizure while I was on generic.

For about the past year my blood counts have been fluctuating even while on brand name though (I switched to brand name about a year and a half ago).

My counts have usually been about 10 but six months ago it dropped down to 8.4 and just the other day I got it taken again and it was 11 (as long as I keep it above 7.5/8 I am generally in no danger of having seizures).

The doctor decided to decrease my dosage a bit though this last time because it had gotten up to 11 so I am wondering could the fluctuation be a result of me having too much medication and it needs to be reduced?

I started taking Keppra also last time I had a seizure just to kind of give me a safety net incase my Tegretol level dropped low so I still think I will be ok even though they are dropping my Tegretol dosage.

So I'm just asking can taking too much medication (or at least more than you need) cause your levels to fluctuate or if you are taking too much will it always be too high?

I understand the worry about it getting too high because it can possibly begin to affect your organs but I also worry about it dropping below that safe zone to where you will be at risk of having a seizure.
 
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Were the blood serum levels all checked at the same time of day? If they weren't, that could explain the variation in the results. Ideally, the blood test should be taken at the time when your medication is at its "trough" level, (usually before someone takes their morning dose). There are other variables (such as metabolism, other medications, ) that can also affect the clearance rate of a medication.

However, the most important thing to focus on is not the number of the blood serum level, but how you actually feel. If your seizures are controlled, and you aren't experiencing any symptoms of toxicity, then you can stay put. You should discuss your concerns about toxicity with your neuro, and ask him to look for signs. Common ones are nystagmus (which is when your eyes involuntarily dart back and forth) and ataxia (muscle weakness and lack of coordination).

If you think that that there's a chance you could have seizure control on a lower dose, then ask your neuro about the possibility of a small taper in your dose, to see how you feel.
 
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