What to do when you've tried everything?

Posted by historygirl @historygirl, Jul 12, 2018

I've had epilepsy since I was 12 years old and I'm now 23 still having seizures. The longest time I've ever been seizure free is 3 years. Right at year 3 I had a grand mal seizure. That is the last time I've ever been seizure free for 3 years. Whenever I do have a seizure it's always been a grand mal and I never get an aura or any sign I'm about to have one. I've had a seizure were I'm having a normal conversation with someone and nothing is out of the ordinary. Since I was 12 I've had two seizures an hour apart or two seizure in one month then the following month. Recently, I had one in April and then another one in June with no physical reason. I eat healthy and I workout for 45 to 60 minutes everyday. The theory is I'm having seizures based on my hormones. I've had 3 CAT scans, 1 MRI, and countless EEG's. All my EEG's show I have abnormal spikes in my brain and if I get a high spike over the threshold line I will have a seizure. The only thing my Neurologist has been doing is writing my prescription for the same medication I've been taking since my seizures started. I'm at the max dose of my medication and yet still had a seizure while on the max dose. I've been to several doctors who aren't Neurologist to see if something else is causing me to have a seizure and no one can tell me anything because they aren't willing to think outside the box. Their theories are if they can't physically see the problem they can't do anything. It's frustrating because I'm 23 and can't drive alone and when I do have a seizure I can't drive at all for 6 months. When I was in college I was driving around campaigns and was at a stop light, but I had a seizure and went right through the red light where I ended up in the bushes in front of a bank, so I was told by bystanders. I have limited freedom because I never know when a seizure will happen, so I'm rarely left alone. I'm lucky however compared to other people who have epilepsy because I'm not having them everyday and not having several seizures throughout the day, so I'm very lucky with the amount of seizures I have. Overall, I'm just frustrated because I want to know what's causing them or how to prevent them, so I don't have the fear of not knowing when they happen or where I'm at. Any suggestions would be much appreciated because I'm starting to run out of ideas.

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@historygirl

I agree I do need another neurologist. I've gone to three neurologists already and I thought the recent one would be good, but he's been my neurologist for 3 years now and hasn't really done something different from the other ones. I've done several EEGs and I've had several CAT scans and recently got an MRI done. On my EEGs it shows my brain waves are abnormal however never have I been told what side they are coming from. Also my CAT scan and MRI show nothing so I'm still having seizures but have no clue what is causing them.

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Hello, @historygirl - wondering how things are going with your epilepsy? Did you end up seeing another neurologist?

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