The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Anyone have seizures?

Discussion in 'Neurological/Neuro-sensory' started by artaylo7, Jul 25, 2017.

  1. artaylo7


    Hi Everyone,

    I recently had a 24 hr EEG on and the report was uploaded, but unfortunately I don't meet with the Neurologist to go over results for quite awhile. I've requested a sooner appt., but to no avail. Not looking for medical advice or diagnosis, but wanted to see if anyone has had seizures related to this and if this report makes any sense.

    Appreciate any thoughts. Thanks!!

    Description of recording: The seizure started at 3:30 PM. From the beginning shows symmetrical background palpation of 8-12 Hz frequencies. Amplitude maximum 70 µV. There are just muscle artifacts and blinking chewing artifact seen today. No spike spike and wave or spike and slow limits. Background and organized.

    At night patient with all stage of sleep with no underlying seizure activity. Background state symmetric and organized.

    The next day patient will call continuing showing normal frequency amplitude with no underlying epileptiform discharges. He stages. At 1:30 PM.

    Digital spike analysis reviewed in detail did not show any active underlying seizure activity.

    Interpretation conclusion: This is essentially a normal 24-hour EEG monitoring with video recording and digital spike analysis. Clinical correlation recommended.
  2. Sushi

    Sushi Moderation Resource Albuquerque

    We do hear reports of a few patients having seizures though it doesn't seem to be common. This is just my recollection--I don't have any data.
    Valentijn likes this.
  3. Kati

    Kati Patient in training

    Hi @artaylo7, the 2011 ME-ICC criteria does not mention seizures but sums up the neurological findings.
    i hear patients with ME and related diseases getting seizures but it is not widespread. i do not believe that treating them would be any different than any other patients. The neurologist should be able to help you out, though he/she may not be proficient in the science of ME- then you may want to see the very few ME experts practicing, the ones whose names keep on appearing in scientific journals and who attend the big professional conferences.

    Of note one patient who is known to have seizures is Jessica Taylor, a young patient who has made her journey public (look up Share a Star foundation)

    Best wishes.

    Edit to add: the report is not making sense to me, but I am not a professional. Are you aware you had the seizure, or are they witnessed by someone? Have you had any kind of brain imaging? (You do not need to answer if you don't want to, it just seems to me that it would be the next step.)

    Last thought, if you feel you need to be seen sooner you may want to ask the neuro's office to put you on the cancellation list. Sometimes that helps.
    Last edited: Jul 25, 2017
  4. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I think that depends on the why we are having the seizures eg some of us have seizures from the low blood flow to the brain.. I have many of my seizure like or seizures due to that (seizures can happen with POTS).

    my EEGs show the common ME non specific abnormality.
  5. ghosalb

    ghosalb Senior Member

    upstate NY
    I had a major seizure in 2010 after continuous use of computer and also some emotional stress....24 hr. EEG did not find anything and no drug was prescribed...I try not to use computer for too long at a time after that event. Even healthy kids who play computer games a lot get seizures sometimes. I have CFS for 20-25 years. I had a mild one few months ago because of some stress.
  6. MTpockets


    I have frequent seizures. Two EEGs have been "inconclusive". The Dr doesn't have a diagnosis, but he won't say everything is normal either. I tend to seize when I overexert or overheat. I have had ME for 21 years, bedridden for 3 years. Word of warning, if you try any of the seizure meds pay attention to side effects. Some of them made me extremely ill. Vomiting, hallucinations, passing out. So make sure someone is there when you first try a new one.
    Valentijn and ghosalb like this.
  7. Wonko

    Wonko Senior Member

    The other side.
    I used to have frequent seizures, it was thought for a couple of years that I had temporal lobe epilepsy but neuro's kept saying no, I even had a seizure whilst under examination by a neuro and he "agreed" I had seizures but said that they weren't epilepsy, he promised further investigations but I never heard from him again. About a decade ago I stopped having then for no apparent reason, even most of the "myoclonic like" jerks seem to have stopped, used to be tens/hundreds a day, they now only happen rarely.
  8. lnester7

    lnester7 Seven

    When I used to crash I had trembles (seizure like episodes) if the inflammation was very high but could not prove to doctor, I since then learnt that it is when I push my nervous system beyond tolerance. I went to hospital for 3 days to test OI and by the third day the test provoke them, so I know for me is OI. I was doing malsava maneuver and if I do that over and over (like blow tones of balloons I can provoke it).
    Since I know is OI I don't push as hard ever anymore, so been a while since I had one of this episodes. They wanted me to go to a special seizure center but I never did since now I can control it.

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