does anyone else suffer with seizures with cfs?

Discussion in 'Fibromyalgia Main Forum' started by suzi123, Feb 11, 2013.

  1. suzi123

    suzi123 New Member

    They are so horrible and scary
  2. ghosalb

    ghosalb New Member

    It happened to me one night after I used computer for little longer. This is when I was otherwise ok (for a CFS person) i.e. could walk around. Three months after that I had my second major relapse and it put me to bed/couch/homebound for 2 years. Since my siezure, I try to avoid using computer as much as possible. I do not know if there was any connection between seizure and my getting second (major) relapse.
  3. IanH

    IanH Active Member

    It may not actually be a seizure.

    Such events are fairly common in ME/CFS, especially when saturating the visual senses. Computer screens are a common trigger. So are loud continual buzzing sounds. The event itself is more akin to migraine than seizure. However convulsion can also occur which makes it seem like a seizure.

    This is all made more likely with stillness, ie sitting for a long period. This is why computers are a likely trigger.

    We are all more likely to suffer from these sorts of events which are nearly always triggered by an external event. This is also because blood flow to the brain is lowered as you can also read about in the latest PH posting from the study by Professor Newton.

    Do you take magnesium? Magnesium helps to reduce these events considerably.
    Take magnesium citrate 200mg twice daily, plus potassium citrate 99mg twice daily.
  4. ...I've experienced "simple partial seizures" which is one type of seizure that is common with ME/CFS. If you have a kindle or iPad and can download the book, "Chronic Fatigue Syndrome: A Treatment Guide, 2nd edition" by Erica Verrillo, it explains very thoroughly all aspects of ME/CFS, including a section that explains about seizure activity and what causes it in CFS as well as possible treatments. This book is a wealth of information and answers just about all of our questions about this DD.

    There are so many things about ME/CFS that can be scary... The neurological symptoms are some of the worse (along with chest pain and difficulty breathing at times)... But I am glad you found this board for help and support... It has been such a blessing to so many of us... So many caring folks here...

    But I also can't say enough about the book I mentioned... I believe it will help answer a lot of your questions... God bless you...

    Blessings and Gentle Hugs,
    [This Message was Edited on 02/11/2013]
  5. suzi123

    suzi123 New Member

    It is actual seizures I get had an eeg which confirmed it used to have 10 a day but thank god have lessened greatly I still don't know why although I still get dodgy spells everyday they are awful feels like our dying and my breathing goes funny medication foods and computers and light bring them on
  6. Mikie

    Mikie Moderator

    I had a sleep study done which showed some seizure activity which was not allowing me to stay asleep. I also had sensory overload, muscle cramping and tinnitus. Klonopin has been a God send and I've been on it, actually the generic, Clonazepam, for 13 years now.

    I keep a little with me and if I feel sensory overload coming on, I put a small piece under my tongue and it stops it immediately.

    I have never had a full-blown seizure that I am aware of.

    Love, Mikie