1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Are seizures related to ME?

Discussion in 'Neurological/Neuro-sensory' started by LaurelW, Sep 26, 2011.

  1. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    88
    Utah
    Hi,

    My mom, who has had ME for almost 30 years, is in the hospital for having a couple of seizures and becoming disoriented. She's never had them before, and the doctors can't figure out what caused them. She and I have talked about how nobody has studied the long-term effects of having ME and being older (she's 83). Does anyone know anything about this?

    Thanks very much.
  2. Wonko

    Wonko Senior Member

    Messages:
    627
    Likes:
    103
    England
    I dont really "know" anything about it but in my case seizures are part of ME, I havent had a bad one for a few years but have more minor ones quite often. I have had 2 full workups for epilepsy and been told it's definately not that.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    5,350
    Likes:
    3,690
    Albuquerque
    Ken Wilber, part of the Incline Village cohort, had something like 12 grand mal seizures so it does happen to some.

    Sushi
  4. Nielk

    Nielk

    Messages:
    4,827
    Likes:
    3,755
    Queens, NY
    Hi LaurelW,

    I don't know from first hand experience but, I have read that seizures could definitely be a symptom of historical ME. ME has a large neurological component so it makes sense that if you are severely effected or for a very long time, you might get seizures. I hope they give her anti seizure medications so she doesn't have to experience them anymore. Sorry you have to go through this and sorry about your mom. I hope she gets better soon. I don't think that necessarily the older you get, the worse it gets. I know of a patient who in his old age, the ME disappeared
    All the best to you and your other,
    Nielk
  5. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    Yes seizures were part of ME for me in the early days of severity (uncontrolable muscular twitching and loss of consciousness at least twice). Unable to sleep for pain I was given Neurontin originally low dose rising to epileptic dosage. Deep sleep was restored over this period and it appeared to be a bit of good turning point. None of these problems have reappeared since. (about 8 years ago). Hope you can find aid too Laurel.
  6. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    88
    Utah
    Thanks to you all for your answers, that's very helpful. :mask:
  7. fla

    fla Senior Member

    Messages:
    234
    Likes:
    38
    Montreal, Canada
    I happened to watch an Andrea Whittemore clip today and she mentions seizures in her sleep noticed only by her husband. I have the same experience having my wife mention me having seizures at night that I never noticed. I do have PENE the next days though without any specific activity.
  8. L'engle

    L'engle moderate ME

    Messages:
    930
    Likes:
    392
    Canada
    fla, what do your seizures during sleep consist of, if you don't mind saying? I've been told I do some pretty extreme muscle twitching in my sleep, but I don't know if these are actually 'seizures'. I'm taking methyl B12 and experience twitching at rest on this supplement, though nothing I would call a 'seizure'.
  9. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    262
    Long Beach, CA
    The Hummingbird Foundation includes seizures on their symptom list.
    http://www.hfme.org/themesymptomlist.htm

    Anecdotally, I've heard several ME/CFS patients mention having seizures at some point.
    Enid likes this.
  10. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    88
    Utah
    Thanks! It turns out that I mentioned the study on abnormal cerebrospinal fluid to my mom's nurse, and I got word this evening that her doctors are completely flummoxed and would welcome any information I can give them. I'm printing out the Hummingbird Foundation's symptom list and the CSF study. Does anybody know of any other papers that I could take that would be helpful?
  11. CBS

    CBS Senior Member

    Messages:
    1,353
    Likes:
    197
    Western US
    What about Lenny Jason's two papers on kindling:

    http://www.ncbi.nlm.nih.gov/pubmed/21892413
    http://www.ncbi.nlm.nih.gov/pubmed/21253446

    Relates to epileptiform activity.
  12. meadowlark

    meadowlark Senior Member

    Messages:
    131
    Likes:
    10
    Toronto, Canada
    For the record, I've had two grand mals (each in public, when alone), and the very specific visual display that precedes them twice. Mine seem to be triggered, in part at least, by very bright light. Haven't had any such disturbances for three years. And of course, I tested negative for epilepsy.
  13. leela

    leela Slow But Hopeful

    Messages:
    2,289
    Likes:
    2,380
    Couchland, USA
    So sorry to hear about your mother, but very glad she has such open-minded, caring doctors.
    Here's an abstract I found in the library:


    Chaudhuri 1999 - Chronic Fatigue Syndrome is an Acquired Neurological Channelopathy

    Chaudhuri 1999 CFS Aq Neuro Channelopathy.pdf

    Chronic Fatigue Syndrome is an Acquired Neurological Channelopathy. ABHIJIT CHAUDHURI and PETER O. BEHAN

    Abstract
    Many symptoms of chronic fatigue syndrome (CFS), including severity of fatigue, may be periodic, fluctuant and induced by physical and mental activities, including trauma and stress. The fatigue in CFS is distinct from the fatigue of neuromuscular disorders but is similar to that found in disorders of the central nervous system such as multiple sclerosis, Parkinson's disease and multiple system atrophy. Though fatigue is a common symptom of depressive disorders, it is now clear that CFS patients differ from patients with major depression in their symptoms, biologic markers such as steroid metabolism and response to standard antidepressant drug therapy. In this paper, we propose dysfunctional ion channels in the cell membranes as the key abnormality in CFS which may also be responsible for the altered neuroendocrine functions reported in this condition. In our hypothesis, changes in the neuronal ion channel function from time to time offers a rational basis to explain fluctuating fatigue and related symptoms in CFS. Finally, ion channel abnormality leading to selective neuronal instability may be the common disease mechanism in CFS and other paroxysmal disorders aecting brain functions such as migraine and epilepsy.
    Enid likes this.
  14. Enid

    Enid Senior Member

    Messages:
    3,310
    Likes:
    825
    UK
    That's interesting leela - my Neurologists suspecting Parkinson's or MS in the early days. The Hummingbird's list/description of symptoms given by ixchelkali @ post 9 is just the very best (and matches my personal history exactly)- good to see spelled out clearly.
  15. aprilk1869

    aprilk1869 Senior Member

    Messages:
    294
    Likes:
    56
    Scotland, UK
    This might be useful:-

    Seemingly Alinia and Albendazole both cross the blood-brain barrier so might be worth looking into.
  16. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    88
    Utah
    In a strange twist, it turns out that my mom was at a symposium this last weekend where 50% of the attendees ended up getting sick from the listeria-tainted canteloupe from a farm in Colorado that has just made it to the top of the news stories today. It affects mostly the elderly and people with compromised immune systems, so ME patients beware! One of the possible effects is seizures, so it could explain what happened to her. The doctors are testing for it, but haven't gotten them back as of yet.
  17. L'engle

    L'engle moderate ME

    Messages:
    930
    Likes:
    392
    Canada
    That's terrible, Laurel. I hope your mom will be ok...
  18. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    My doc suspects I have seizures too. I will have an EEG soon. I always thought seizures were all about losing consciousness, but now, after reading up on temporal lobe epilepsy its like :THAT'S ME!! it would explain my extreme memory problems too.
    Problem is; the medicines suck. I tried lamictal but that made it worse. All the other stuff makes you gain weight or increases cognitive problems severely. Ketogenic diet is another route. And surgery for some. Anyway first get me an EEG..
  19. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,278
    Likes:
    4,669
    Cornwall England
    My seizures were subsequently diagnosed as epilepsy. So I went from Viral Encephalitis to Myalgic Encephalomyelitis with Epilepsy on top! That's the twin diagnosis I have had now for 8 years (ME for 10).

    Not had a major seizure with the loss of consciousness and public 'fitting' (resulting in hospital admissions) for a couple of years but still experience seizure-like episodes that are observed by family.

    These mostly occur when I am trying to sleep or asleep. Been on Sodium Valproate (Epilim) for 8 years I suppose. Hope your Mum gets some help.
  20. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    88
    Utah
    They still don't know what caused them. Yesterday they were getting ready to send her home because she's much better, but then they discovered that both of her shoulders are broken from when she had the two toniclonic seizures, and she's havin surgery today. The small-town hospital she went to first completely missed that, and so did the big-town research hospital she's in now, for five days! Needless to say, a lot of us are having flames coming out of our ears at the moment.

See more popular forum discussions.

Share This Page