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10: Drug Resistant Epilepsy

About 30% of people with epilepsy have what is described as "drug resistant epilepsy" this means that their epileptic condition is not improved by two or more anticonvulsant medications. By the time someone has made it to their 3rd drug, there is only a 4% chance that they will ever become seizure free. I've lost count of exactly how many, but personally I've been through nine or ten and am still not seizure free.

I actually just finished a run with another ineffective anticonvulsant, Aptiom. My neurologist thought it would be a good idea to try it for my optical seizures. It worked for about a month, but then stopped working altogether. Now I'm on the slow decrease of Aptiom before I can get off of it completely. Then there are others I will probably start to use. I'm not too distraught about it though. The side effects it caused weren't the worst I've experienced, but they were very strong. I would get extremely dizzy and lethargic and therefore unable to function in most capacities. It built up slowly over days then would peak at a point and get so bad that I was forced to skip a dose in order to get back to a level of normalcy.

It's somewhat frustrating when I hear people say that they are taking a medication that I have taken in the past and it works for them perfectly, but never worked for me at all. I'm glad that they are getting relief, but it's irksome that I can't seem to find one that hits the spot for me.

Having drug resistant epilepsy also makes it hard to look into the future and see a brighter place. With only a 4% chance of ever being seizure free, it's a pretty fair bet that if seizures are stopping me from doing something now, they will be stopping me from doing it for the rest of my life.

One thing that is not so bad about having drug resistant epilepsy, is that it has pushed me to do so much research on my condition. I have a much more broad view of epilepsy and seizure disorders now than I ever would have alternatively. This is probably the case with most who live with a seizure disorder of some type. For most, education on this subject is mostly academic, as it does not directly interfere with their daily life. But others like us, it is our daily life and we have a responsibility to ourselves to educate ourselves about it. Those of you who have been diagnosed with a drug resistant form of epilepsy, share your experiences here or in the forums. Thanks for reading!

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