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undiagnosed neurological condition

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sarie22
sarie22

About two months I randomly began to experience what my doctor describes as "episodes." They were believed to be seizures, but have been ruled out by several EEG's, CAT Scans, VEEG's, MRI, etc. I began to take Topimax and am currently taking 100mg of that daily. That has contained my episodes a bit, but I am still having them daily. Now they consist of rapid onset of extreme fatigue; Internally I feel as though I will fall asleep instantly, but externally my eyes flutter, I lose control of my neck, and my jaw tightens up. I have to be sitting or else I will collapse. This lasts for 2-20 minutes and then I go right back to my day as if nothing has happened. This happens 0-5 times a day. As I said, this started two months ago, and I have no history of this happening ever before. I have seen a neurologist who ruled out seizures and recommended me to psychiatrist. The psychiatrist recommended me to a ENT, who I have yet to see. Any help would be greatly appreciated!!! This is what I am currently experiencing, but two months ago, this all began when I was admitted to the ER for extreme vertigo and a severe migraine. I have a history of migraines. 

0 likes, 6 replies

6 Replies

  • samantha38049
    samantha38049 sarie22

    Posted

    Hi have you had any other symptoms, you said about your eye flutters, and jaw going tight....is this only on one side of your face, 
  • SteV3
    SteV3 sarie22

    Posted

    Hi Sarie,

    I think your doctor was a bit vague to you, on what "Episodes" refer to in medical terms. The actual term is "Functional Episodes", but this covers about 28 variations. It is not to be associated with Epileptic Attacks which produce electrical pulses on an EEG test.

    "Functional Episodes" are also known as Dissociative Attacks, don't associate this with "Dissociative Disorders", which is another condition.

    Your Doctor does not seem to be very clear with you at all, and I cannot understand after having all those tests your Neurologist Consultant is referring you to a Psychiatrist, whom has referred you to a ENT (Ear, Nose and Throat) Specialist!! That to me, sounds like they do not know what is wrong with you and just passing you around the hospital.

    Personally, the person that should be dealing with you is a Neurologist Consultant, if it is the same one ask for a second opinion. Your doctor mentioned "episodes", but did not elaborate on the type or level. Perhaps, your doctor is not that well up on "Functional Episodes" and the 28 variations, but your Neurologist should be, and not passing you to a Psychiatrist.

    I would give you a website to check but it would cause my post to go in to moderation, so I will show you another way. The guy that runs the website is a well-known in for specializing in Neurology, his name is Jon Stone (maybe if you mentioned this name to your Neurologist he might know him, well he should do!!).

    Go to Google and type the following in the search "jon stone neurologist neurosymptoms" (omit those quotes). You will see a site at the top of the search called neurosymptoms. You can email him, if need be and he will contact you with what you need to do.

    I hope that helps, theres a lot of content on there that is relevent to you and not an ENT Specialist!!! I cannot get over that!! rolleyes

    Regards,

    Les.

  • woodbon
    woodbon sarie22

    Posted

    Hello, Sorry to hear that you are having such alarming symptoms.  Maybe the neurologist is thinking this could be some form of panic attack.  They do have some strange and unpleasent symptoms and often are difficult to diagnose.  Some neurological problems aslo have symptoms that effect your mental health.  Have you spoken to your GP about this?  He may well be able to explain the neurologist's reasons for physic report.  I hope you see someone soon as it sounds as if you need help. Diagnosis is often a case of ruling things out to find the problem causing you so much trouble.
    • SteV3
      SteV3 woodbon

      Posted

      HI Woodbon,

      Surely, a Neuropsychiatrist, would only be referred to if the patient has a brain injury or a brain disorder. To me it sounds like she has been sent around roundabouts, not even knowing what is going on apart from "Episodes" which they have never enlightened her about.

      If it was me I would question their reasons - but that's me, and seeing too many Professors, US Neurological Teams, Neurophysiotherapists, and the lists go on and on over many decades.

      Regards,

      Les.

    • penny49988
      penny49988 SteV3

      Posted

      Les,

      I agree with you too many of the wrong Dr.s without any answers.

    • woodbon
      woodbon penny49988

      Posted

      I would ask what the a neuropsychiatrist was needed.  Although its easy for  me to sit here are say what I'd do, I know sometimes, faced with the medics you can feel that questioning their judgement is difficult and you just can't think what to say!  Thats me!
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