No idea what to do...

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Shmiles

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Hey all,

Hope you're all having a good evening! I figure I'll start from the beginning and not make this longer than it needs to be.

First off, I have no history of epilepsy in my family and have not done anything in my life that should make it more likely for it to happen. I'm 26 years old and was in Berlin when I had my first Grand Mal. I was instantly taken to hospital and had a CT and EEG... nothing out of the ordinary was recorded. That night while sleeping I had a 2nd Grand Mal and was immediately put on 1000mg Keppra twice daily. I was discharged the next day.

During this time away from hospital I began to have minor seizures of some sorts...tingling in my leg which mostly only happened when I stood up and felt similar to pins and needles. I shrugged this off initially but this continued for a few days and self-admitted myself a few days later. I was then put on Epilum/Valproate in an attempt to control these sensations which while in hospital had spread to a tingling on my right shoulder, a burning sensation on my buttock when sitting down (along with the beforementioned leg sensation). I was now on 1000mg Keppra and 500mg twice daily.

I returned to Australia a week after no more symptoms were present. I saw a neurologist here who seemed to have no idea what this leg sensation was, which now only happened while I was in bed about to go to sleep, or early in the morning as I started to wake up. Around this time I also started having a weird sensation in my throat, like it was closing up except my airways were not restricted in any way. I was then prescribed Ametriptyline 25mg once a day.

This seemed to control these other sensations to a degree but they are still occurring and I honestly have no idea what to do next. I don't even know if I have epilepsy since I was just thrown onto a huge amount of medication quickly and can't get to see an epilepsy specialist since my case isn't severe enough since it's under control with the meds.

Cheers,
Matt.
 
Matt, the tingling sounds like it could be partial seizures.
 
Hi Matt, welcome to CWE!

Usually neurologists will use the standard of at least two grand mal seizures to confirm an epilepsy diagnosis. A normal CT and EEG don't rule out an epilepsy diagnosis either. So I would say that technically you would qualify, esp. with other tingling sensations.

That said, it sounds like it would be a good idea for you to have a follow-up appointment with your neurologist to evaluate your medications, and discuss the more recent seizure activity suggested by the tingling. It's worth pushing for this, even if your seizures seem minor. If the medication isn't controlling the tingling , then you deserve a medication review to see if a change in dose or medication would help.

Of additional concern: Ametriptyline (the anti-depressant you were prescribed for your throat issues) can increase the risk for seizures.

In the meantime, keep a journal to track your symptoms. If they persist or progress in frequency, duration, or kind, then that's an excellent reason to see the neurologist. The throat sensations you're experiencing could also be seizures. these threads might be helpful in that regard:
http://www.coping-with-epilepsy.com/forums/f23/does-anyone-have-seizures-their-throat-21579/
http://www.coping-with-epilepsy.com/forums/f23/lump-my-throat-4055/

And while you're waiting to see that epilepsy specialist, take a look at this thread for ways you can be proactive: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 
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