8 Years and still uncontrolled!!!

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TeriAdele

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I was diagnosed with Epilepsy in 2006; the seizures I have are tonic clonic. I have only been on 3 medications since I was diagnosed; Lamictal, Topamax and Keppra; Topamax and Keppra were my only combined medications after they failed separately. Lamictal is what I'm on right now; 200mg in the morning and 300mg at night (apparently that's as high as I can go on them) the longest I have been without a seizure was June 2012 to January 2014. I had another yesterday.

My last EEG was in 2011 and I never get any blood tests done to see if the medication is doing anything negative to my liver. There was a time where I came very ill and my local doctors did blood tests and I had low liver enzymes and was almost borderline anemic although they didn't say what the cause was.

I see a neurologist not an epilepsy specialist and whenever I see her she spends more time asking if I'm, sexually active? What am I doing in my spare time? Do I have a job? I've never seen her pick up her medication book.

I just feel she's acting like she's done all she can think of.
 
What are you doing in your spare time!?!?! Isn't there someone else you can see--anyone? What bad care, seriously!! There are so many other med options out there, and you deserve better.
 
I am on the combination Keppra and Vimpat. My Epilepsy specialist said he would have never tried that combination but my first neurologist loved to try latest and greatest together.
 
The health care system that I get (NHS) is complete crap, there will be other people I can see but she and the other hospital staff will just say, "No; everyone is booked."
 
I hope you can see someone better soon. I don't know if this will make you feel better or worse, but I've had epilepsy for over 30 years and am still not controlled. I've only had 5 tonic-clonics, but thousands of complex partials in that time.
Let us know how things go!
 
Hi and welcome TeriAdele,

Like Arnie, I've had E for 30+ years and mine are considered retractable, no control after trying many meds, brain surgery and now the VNS. Plus I take Keppra and Topomax. I have CPs and TC seizures. It is best to see an epileptologist, but it usually takes months before one can get an appointment with one. Can you call your PC dr. and get an appt. with a specialist thru that dr.?

Good Luck!
 
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