Need Answers On My Condition

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neno21

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Hello, I was wondering could someone give me a little insight into my condition and if anyone had any experience with what I am currently going through.

I started having episodes at the end of 2015 Christmas to be exact technically I didn't have a seizure never in my life I slept walked, when I slept walked I was still in the dream but could hear my surrounding, I heard my mother ask what was I doing, in turn, I made myself fall to wake myself up. They call the Paramedic they ran a series of test in the ER couldn't find anything gave me 1mg of Keppra just in case it was a seizure. This has happened to me before in 2010, I then woke myself up also by falling also. Every time this has happened when I've been under extreme stress. But I've only had two instances of sleepwalking 2010 and in 2015

Now my condition has transformed from sleepwalking into seizures I haven't had any recent episodes of sleepwalking but in 2016 but I've had a total of 10 seizures in 2017 I had 8 this year 2018 I've had only 2 so far. It seems the seizures didn't start until Keppra was introduced and Dilantin they started me on Dilantin when I had my first seizure in my living room no one saw it they just found me unconscious I could still hear everyone around me but I couldn't move and just seen black as I was being taken away by the Paramedic. I do remember leading up to it happening I was extremely angry and on a video chat call, at the time I said to myself as weird as this might sound ''It's so bright in this room I could have a seizure and then I just blacked out''. They admitted me to the hospital and started me on Dilantin they took me off of Dilantin and started me on 250mg of Keppra but only gave me 30 day supply of it and told me to take the whole 30 days and to follow up with a neurologist if I have a seizure after the 30 day supply of Keppra then I am epileptic. After the 30 day supply was up I started having seizures back to back hence the 10 seizures in the year 2016 they kept increasing the dosage of Keppra until I was a zombie at 3,000mg I couldn't take it anymore and I told them could they please let me come down.

I have been having multiple types of seizures since 2016-2018 from Tonic-clonic seizures, Myoclonic seizures, Focal (or partial) seizures now my seizures have transformed into Myoclonic seizures where I laugh or jerk twice before the seizure then my head turns right and my body just goes out of control I'm not sure if they are myoclonic seizures or gelastic seizure I don't remember anything after these episodes and I practically destroy my tongue. As a coincidence, I remember reading a poster in the neurologist about gelastic seizure now suddenly I'm having these type. I'm starting to think I'm causing all of this stuff.

I have had 4 EEGs 1 Sleep study I don't know how many blood test 2 MRIs 1 Cat Scan they are all normal I'm just lost as to whats going on with me the Doctor isn't giving me any answers so now I'm here for a little help I live in a small town they have a clinic but its so backed up I can only get in every 6-10 months. Could the Keppra and Dilantin have started me to have more seizures could I possibly be Non-Epileptic Seizures or (pseudoseizures) and just need to see a psychiatrist am I going crazy?
 
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As a first step I would recommend an evaluation by an epileptologist (a neurologist who specializes in treating seizures). You may have to wait 6 or more months for an appointment but a doctor with this extent of training is generally far better than most general neurologists for interpreting tests and making a diagnosis. It is good that the tests you have had done are normal as this rules out some possible causes of your symptoms however the fact that they are normal does not rule out everything and one of the things the normal results cannot rule out is epilepsy.
 
As a first step I would recommend an evaluation by an epileptologist (a neurologist who specializes in treating seizures). You may have to wait 6 or more months for an appointment but a doctor with this extent of training is generally far better than most general neurologists for interpreting tests and making a diagnosis. It is good that the tests you have had done are normal as this rules out some possible causes of your symptoms however the fact that they are normal does not rule out everything and one of the things the normal results cannot rule out is epilepsy.

Thank you for your reply yea I tried to do that but the nearest one is 5 hours away and they said I needed a referral. I asked my primary care doctor for one he told me he could only referral in his insurance network. So I’m starting first looking for another primary care doctor to see if I can get referred to the guy 5-6 hours away man has this been very tough and exhausting road but I thank you for your reply it let’s me know I really need to get that referral.
 
Hey neno, I agree with MJ that evaluation by a specialist could help confirm a diagnosis and find a better treatment. Perhaps a longer sleep study or EEG might be helpful. If the epilepsy diagnosis is confirmed, there are medications other than Keppra that might be a better fit.

Whether or not there is a psychological component to your episodes (and some people have both kinds of seizures), you might benefit from seeing a therapist, since extreme stress seems to be triggering.

If you aren't already, I recommend that you keep a symptom journal tracking the episodes (frequency/duration/kind) and any potential stressors or triggers. A journal can also potentially help you to identify (and eliminate) triggers or stressors that may be contributing factors. You can read a bit more about that here:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 
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