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Sick of AEDs - Unmedicated?

Fri, 08/12/2016 - 12:28
Hi, I'm 20 and am currently taking 500mg Keppra (levetiracetam) twice a day. I was diagnosed with temporal lobe epilepsy when 13, and put on tegratol (carbamazepine) which controlled the seizures completely. After a year I was taken off the drugs and the epilepsy appeared to have gone. In October 2014 the absences began occuring again, and so in October 2015 (turns out the NHS can be pretty slow to act...) I began taking tegratol again. It once again did the job, preventing any complex partial seizures from occurring, though I did continue getting the 'warning signs' (nauseous feeling) that I would get before a complex partial occurred. In February 2016 I decided I could no longer take the side effects of the medication (fatigue and depression), as it was having an awful impact on my quality of life, both social and academic (I was doing my 2nd year at University at the time). Just over a month ago I was put on Keppra, with a weekly increasing dose up to 1000mg a day for 4 weeks. Again this has stopped the seizures completely, I don't even get the warning signs that I continued getting on tegratol, however the awful side effects are back again. The past week I have been unable to function, remaining in bed or on the sofa, with a large reduction in appetite. For a couple of days I was so depressed that life didn't seem worth living, though as I knew it was just the medication I wouldn't say I was 'suicidal'. On Wednesday (10/08) my GP told me to drop down to 500mg bidaily, and to see how it goes. In the last two days there have been no signs of seizures coming on, but I'm still not functioning and feeling generally unwell. If this persists (which I suspect it will) then I will stop taking the Keppra. My main question is this - if I were to continue leaving the epilepsy unmedicated, what will the long term effects be? My seizures have always been complex partial, where I lose comprehension of any speech around me but can continue a repetitive activity (I've had them whilst cycling when younger and have been able to keep going along the road). Currently I would much prefer the epilepsy than the side effects of AEDs, and would be especially hesitant of trying any new ones whilst the academic year is in full swing - I can live without being able to drive etc if need be. Is there any chance of them evolving into tonic-clonic seizures? I have had EEGs taken with flashing lights with no reaction noted on the scan if that helps. I plan to speak to a neurologist on the matter if the Keppra doesn't work out, but would really like to find out more now about how feasible it would be to go on unmedicated. Thanks, Harry

Comments

without  a doctor knowing

Submitted by just_joe on Fri, 2016-08-12 - 15:29
without  a doctor knowing what you are doing you have the chance to actually kill yourself. Many different seizures generalize. Which means that can become  tonic-clonic. without medications there is a very high possibility of having a seizure which can go into status epilepticus. Which is back to back seizures.  Know that after you take your last dose the meds are still in your body for weeks

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