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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Brain Damage?

Discussion in 'Neurological/Neuro-sensory' started by crypt0cu1t, Jun 13, 2018.

  1. crypt0cu1t

    crypt0cu1t IG: @skagginwagon

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    Does anyone here feel like they have some sort of brain damage/inflammation? There are times when the simplest task feels overwhelming mentally and I have to lay down.

    Watching TV with family is simply too overwhelming and it frustrates me to no end.

    My vision is very dark and looks like TV static. I cant do much of anything without my brain feeling like its on fire.

    I have constant lightheadedness and I feel spaced out a lot.
     
  2. hmnr asg

    hmnr asg Senior Member

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    Those are pretty common symptoms of CFS. I have every one of those symptoms myself.
    And sure it does feel like "brain damage" but there is no evidence that CFS causes brain damage.
    Neuroinflammation however is another story and as far as i remember it is suspected as a consequence of having CFS.
    In fact Dr Montoya is recruiting currently for a PET scan study of CFS patients.
     
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  3. Wolfcub

    Wolfcub Senior Member

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    @crypt0cu1t ....Yes I do, though very mild compared to others, and started the very first day I got sick (i.e not before)

    I get a spaced-out feeling, detached in a weird way (felt like a ghost at the grocery store today like I was walking in a parallel world), a vague but constant ache in my head above right eye which has been there so many weeks. Not even what you'd call "pain" but something isn't right.
    I get clumsy. Keep making typing errors, constantly have to edit everything, have no memory of dreams any more and always remembered dreams before, feel cut off from a part of myself (no psych. history.)
    Though my memory seems okay generally. I can remember most names, birthdays etc. How to get to places in the car....that sort of thing is fine
    I practice doing mental arithmetic. I keep losing concentration adding/subtracting, but keep going back to beginning and having another go until I get it right.

    I do miss my dreams.
     
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  4. notmyself

    notmyself Senior Member

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    there are plenty of tests you can do to see if you have indeed a braind damage ..hope you don 't
     
  5. lior

    lior Senior Member

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    I have all those symptoms apart from the vision one. For me it's got more extreme as time has gone by. Some days I can't manage more than 10 mins of tv at a time. Every day, many times a day, I have to lie down after simple tasks.

    I also initially wondered if it's brain damage and some things you might read online will say that brain damage has similar symptoms. However, since these are common CFS symptoms, it's probably just ordinary CFS - if you've already been diagnosed with CFS, you probably don't have brain damage too.
     
  6. crypt0cu1t

    crypt0cu1t IG: @skagginwagon

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    Well, good to know Im not the only one!
     
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  7. Abha

    Abha Abha

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    Hi,
    I recommend you to have a look at Hypopituitarism..(PTHP)....Joanna Lane has written re this subject in her book
    "Mother of a Suicide: Fighting for the Truth"
    This article from the Daily Mail in 2014 should also be of interest to you....

    How doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'


    http://www.dailymail.co.uk/health/a...rain-injury-30-000-cases-chronic-fatigue.html

    This book by Professor Edward Bullmore should be worth viewing.You can listen to him on youtube too...see my thread on him which is in the Neurological section of PR now
    Book "The Inflamed Mind", by Professor Edward Bullmore

    I have had ME/CFS symptoms for years(now almost 75 yrs)....It was only in 2014 that I finally had a PTHP(hypopituitarism) diagnosis.......antidepressant/ECT treatments made my condition much worse and caused further harm.....Hoping you find this useful.

     
    Last edited by a moderator: Jun 14, 2018
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  8. HeleneG

    HeleneG

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    I have all the same cognitive problems and my head feels like it's under pressure. The question is, will it ever go away?
     
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  9. ryan31337

    ryan31337 Senior Member

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    Hi @crypt0cu1t,

    With your symptoms and diagnosis I would strongly consider testing for orthostatic intolerance if you haven't done so already? OI like POTS & NMH are really quite common but often missed. If you do have OI there are some good treatments & workarounds that can help considerably.

    I would start by getting a basic blood pressure monitor and conducting a few home tests - Google or look on here for 'Poor Man's Tilt Table' test. If the results are suggestive of OI it would be useful to see a cardiologist with special interest.

    I went for 2 decades with just an ME diagnosis as explanation before finally a doctor picked up on the OI, it wasn't the root cause of my issues but it damned sure added a great deal of extra problems that I could then minimise with treatment.

    Best of luck,
    Ryan
     
  10. Abha

    Abha Abha

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    Hi @@crypt0cu1t,

    These links re brain injury may be of interest to you too.Dr Mark Gordon(USA) has many youtube videos re this subject.He talks too in some about his own depression/head injuries.I have posted on these threads re this in the past.Dr Mark Gordon is involved with war vets and NFL players in his clinic.He is also producing cutting edge treatments(nano particles) for his patients...

    Coach Talk with Dr. Mark Gordon: TBI, PTSD and the Hormone Connection



    Joe Rogan Experience #574 - Dr. Mark Gordon, Matthew Gosney & Jason Hall




    Joe Rogan Experience #1056 - Dr. Mark Gordon & Andrew Marr


     
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  11. Wishful

    Wishful Senior Member

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    I'd use the term 'altered neural function' rather than 'brain damage'. The former is temporary and treatable; the latter is likely permanent. Many of us get temporary remission from ME, including those neurological symptoms you describe, so we know it's not permanent damage. It's really quite amazing how you can feel so incredibly lousy and brainfogged, and an hour later, feel healthy and energetic again. Then it feels so depressing when it fades again. :( However, the knowledge that it is possible to feel healthy again remains. We're just waiting for the researchers to find a way to reliably trigger that 'healthy again' switch.
     
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  12. HeleneG

    HeleneG

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    I am sure I have OI even without the tilt test. I can't stand or sit for more than a few minutes without getting very uncomfortable and my pulse goes crazy when I take a shower. It went up to 220 and my normal bpm is 56. Reading about it here was a Eureka experience. Now I check my bpm and try to keep it from zooming up. I spend more time lying down.
     
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  13. Sushi

    Sushi Moderation Resource Albuquerque

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    That is how I would put it also--some sort of brain dysfunction.
    Dr. Jarred Younger at UAB has done a study showing the patients with ME/CFS have a higher brain temperature than controls.
     
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  14. HeleneG

    HeleneG

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    That's reassuring. My brain is my favorite organ.
     
  15. crypt0cu1t

    crypt0cu1t IG: @skagginwagon

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    Mine too! Lol
     
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  16. chronicallyD

    chronicallyD

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    I used to think I had some kind of brain damage too. I have had visual snow (the static you're referring to) accompanied by tons of floaters, halos and sparkling white skies (Scheerer's phenomenon) since my illness started.
    I think stress was a major contributor
     
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  17. sandgroper

    sandgroper

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    Byron Hyde believes that ME causes CNS dysfunction. I definitely feel as though i have brain damage. Somethings don't work at all anymore and others poorly. Mainly executive functions. I have always been too ill to have the tests (neuropsych) unfortunately.
     
  18. Wolfcub

    Wolfcub Senior Member

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    Yes that is true during remissions, Wishful. I noticed that, too. So "altered neural function" is the best description.
     
  19. DoggerFisher

    DoggerFisher Senior Member

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    Our brains are "hot"! :thumbsup:
    I always new it was my best feature
     
  20. lnester7

    lnester7 Seven

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    Have you done a poor's men tilt table test (google is free and you can do yourself). Sounds like OI (I am no doctor but experience on it).
    2) The brain on fire I got under control with a supplement alpha lipoic acid +acetil l cartinine (comes in one pill I use GMC). This also is common on anti nmda receptor encephalitis, there is a thread here on that topic.
     

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