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please help odd symptoms for year and a half

Posted , 2 users are following.

willowgirl
willowgirl

hello everyone - ive been struggling with odd symptoms for a year and a half and have just started developing another scary symptom which to me feels like it could be seizure related. 

for the last year and a half i have been having waves that go through my head, shocks in my head, shocks that go through my ears, hearing fluctuations, ringing in the ears, and just odd feelings in head in general. I have seen multiple neurologists, had mri, eeg, mra, emg, and been through the gamut of psychological drugs since they all say its psychological - nothing is helping.

the past few weeks including this morning something else has started happening - it will be around 6 am and trying to dose back off to sleep and i will suddenly while half asleep (going into sleep) get electic shocks all over my body, a loud pulsing noise getting louder and louder in my head and the feeling like i have to fight to get out of this state. It is really scary and is freaking me out. Does this sound like seizure activity? Also, yesterday i had the same sort of thing but i was dreaming i was passing out and actually felt the dizziness and woke up dizzy. Does anyone have anything familiar and could you help me out? these things have been happening for way too long. 

Just wanted to also add when i was young I had some odd things going on (I am 32 now) like everything around me would start moving really quickly and sounds and noises would sound like things were in fast motion and then when i was leaving a summer camp once in my teenage years (after a sleepless night) I had this bizarre thing happen to me where I was at a rest stop and suddenly everything was like tunnel vision and too bright for me and i wandered around barely knowing what i was doing and ended up at a fruit stand ( I know sounds weird lol ) which i would have never gone to if i was "with it".... This lasted for about 10 minutes til my dad found me and asked what I was doing - it was a very odd experience I have not had since but I still think back on these things and wonder if I always had a tendency for these things..- I am just very scared these things are getting worse and happening more often and to a more powerful extent. Its all throughout my days from the time I wake up til i go to sleep... I just dont know what to do....?

1 like, 6 replies

6 Replies

  • steve1951
    steve1951 willowgirl

    Posted

    Willowgirl

    I’ve never heard of those symptoms, but if you highlight and copy your “waves that go through my head, shocks in my head, shocks that go through my ears, hearing fluctuations, ringing in the ears” section and paste it in google and do a search, there is an article “Brain Zaps: Causes & Treatments For Electrical Shock…” just above your thread.

    Steve 

  • karen26258
    karen26258 willowgirl

    Posted

    'Waves', that's how I describe a simple partial seizure, because I have them, but any of the other symptoms you mention need to be investigated by a Neuro Team. I hope you get help soon. Ask your gp for something to calm the nerves in your brain like Clobazam or Lorazepam. Karen
    • willowgirl
      willowgirl karen26258

      Posted

      karen, i was on klonopin before and it helped about a year ago - im still on it but am completely tolerant of it - it does nothing- when you say waves do they go through your head? Thats what mine do
    • karen26258
      karen26258 willowgirl

      Posted

      Yeah, the only way I can describe them (and I know it sounds odd) is - like the tide is coming in and going out. It sort of sweeps in and sweeps out, does that mean anything to you?

      Any drugs that you have become immune to they should be changed for an alternative, this has happened to me more times than I can mention. I have drug resistant epilepsy, where I am OK for a 'honeymoon period' on a new drug then I go back to square one. There's lots of new drugs to try now the latest one I have is Perampanel.

    • willowgirl
      willowgirl karen26258

      Posted

      Hi Karen - thanks for writing me back - the waves are exactly how you describe them - very odd sweeping through my head like you said - sometimes mine will be an odd sort of pressure, sometimes an electrical feeling. Its very disconserting. I have appointment with Cleveland Clinic epi tomorrow I hope they can figure this all out. I will check out this medicine. How long have you been diagnosed and did it show up on your eeg?
  • karen26258
    karen26258 willowgirl

    Posted

    If this keeps happening and the epilepsy cannot be controlled, ask your Neuro Team to explain about the VNS, vagus nerve stimulator. I have recently had one fitted and so far doing okay.
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