Any thoughts?

[Suzanne H]

Hi there,

My husband is currently being weaned off his current seizure meds and will eventually be put on other ones. But I was going over his seizure history and it seems strange - every time his seizure meds were upped - he had a seizure about a month later.

He had his first seizure last Feb and the neurologist immediately put him on a low dosage while he awaited tests. He saw her 2 months later after the tests and he had no seizures. She sent him for a blood test to get his level and raised it a month later. So - no seizures for 3 months on the low dosage - it was raised and a month later, he had a seizure. She raised it again - 5 weeks later he had a seizure - she raised it again and 4 weeks later he had a seizure.

So he did much better on the lower dosage - going 4 months without a seizure.

Has anyone else experienced this?

Sue

 

[Fedup]

It takes a while for the drugs to get into your system every time they are changed and yes I have had much the same thing, still do but the worst part for me is coming down of a drug while adding a new one, however saying that it would be no harm to mention this at your next appointment, you always need blood tests done to keep a cheek on things, but everybody is differant in the way they handel things. So it would be no harm talking to your doctors about this.

 

[no.guru]

Haven't experienced it myself, but blood levels not within an optimal range will lead to seizures. Too high and too low raise the chances.

She had a target dosage in mind and was raising it gradually, but I'd be interested to know what his levels are now. You're right to be wary.

 

[cazzy]

i did not know that if dose to high can cause seizures that worry cos no one monitoring my seizures at present got so fed up with dr's thought i could do better job maybe not good idea

 

[Nakamova]

The anti-seizure meds are very powerful, and for some people they can actually cause seizures. If there are other medications or health issues, the dosage may need to be closely monitored or adjusted. You should let the neurologist know what you have observed, and suggest that a lower-than-average dose may be optimal in his case.

 

[Suzanne H]

Thanks

You are so right. The anti-seizure meds are powerful. Since my husband has been weaning himself off them (under the neurologist's supervision) he's been feeling so much better. He even said his dreams are lighter in color - he said while heavily on the meds his dreams were dark and about war. His sense of taste and smell has even gone back to normal and he feels more energetic.

You know, Mike has always been really sensitive to meds. After his heart surgery they decided to put him on a blood thinner. So they gave him a low dosage and his blood result went through the roof. They didn't believe the results because the low dosage would never do this, so they came back and took his blood again and yep - through the roof. So they had to give him meds to lower his INR. He's always been like this so maybe the lower dosage of seizure meds might have worked for him - even though his level was low. But it's so true - every single time his meds were raised he had a seizure about a month or so later - whereas on the lower dosage he went 3 months with no seizures - she upped it and sure enough - a month later he had a seizure.

So when we see the neurologist on Sept 11 - I'll tell her this.

Thanks everyone.

Sue