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New ideas, anybody?

Mon, 04/06/2020 - 12:42
Hello! I am a 25 years old girl, and have had epilepsy for 19 years now. It started as absence seizures when I was around six years old, and then developed to generalized tonic-clonic seizures when I was around 14 (about a years or so after I hit puberty if anyone was connecting those dots..). I was struggling to find the right medications from the years 14-16, but then I got on Zarontin (ethosuximide) and it worked wonders! So the following years, from 17-22 I had some years that were seizure free, and some years where I had the "typical seizure after drinking alcohol and thinking I could live like a normal person".. I actually got so fine that my doctor wanted to take me off the drugs, and so we did. Safe to say it didn't work. The last couple of years have been just horrible. In 2017 I had 6 seizures and in 2018 I had 21 seizures. In 2019 I only had 2, but the drugs I was, and still am on are making me so "drugged" out that I feel I have "lost" all my intelligens. I am also exhausted all the the time. I have severely damaged memory, I speak like a drunk person and I feel I can't "keep up" with the world. I lay in bed almost all day every day. I've also had 3 seizures so far in 2020. - I've tried Lamictal, Topimax, Keppra, Orfiril in the past, and now I am taking 750 mg Zarontin, 500 mg Zonegran (qutting this gradually as it is not working) and 800 mg Zebinix. - I've had CT scans, MRI scans, hormonal testing, my blood tested for oxygen levels, blood pressure tests and had several EKG's and of course EEG's. They've tested my breathing, and find nothing wrong with my lungs. But they did find that I had a deviated septum.. They find eplieptic activity on the EEG, but nothing wrong on the bloodwork etc. My sleep habits, eating habits are all good now. And I don't drink alcohol at all anymore. Never done drugs. I should also mention that I had cancer as a child, and did get chemo. SO! I was wondering if there is anything else I could do? Or anything else I should test? Medication I should try? Any ideas maybe my doctors haven't thought of? I am getting desperate, because I feel like my life is passing by and I don't have the energy or health to live it. I'd be so happy for any effort to help! BTW: I'm from not from America, so I'm sorry for incorrect spelling/grammar!

Comments

Oh my goodness!  I understand

Submitted by Imsotired on Thu, 2020-06-04 - 14:29
Oh my goodness!  I understand your situation am there now. I have been having the darn things for over 12 oh no 14 years! I've tried all and after all those years, 6 years ago I had a VNS installed and after about 8 months after the installation my seizures, grand mall, they went from 5 to 6 a month to maybe 1 every month. Lamictal keep it in check but also dumbed me down to where I could no longer function, stopped taking it 3 months ago and have since had increased from 1 to now last couple of months they have really increased. Past couple days have had 4. Sorry bout this long post to suggest you might want to look into the vagus nerve stimulator, and oh well just keep searching for a drug or drug compo that could at least slow them down. Till the VNS started to work. I never reply this long but thinks to lamictal here I am. Best of luck and sorry for the long post. 

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