The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Feel a horrible sensation when watching TV, listening to music and even reading

Discussion in 'Neurological/Neuro-sensory' started by SmokinJoeFraz93, Dec 1, 2017.

  1. Hip

    Hip Senior Member

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    You need to describe what you mean more precisely, because a "horrible sensation" could mean anything.

    Is it a physical sensation or a mental sensation (is it in your brain or in your mind)?

    People with ME/CFS may experience headaches, a "wired but tired" hyperaroused mental state, an inflammatory feeling in their head, sound sensitivity, emotional sensitivity, brain fog, dizziness, etc, all of which could fit your description.
     
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  2. Wonko

    Wonko Senior Member

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    The other side.
    If you don't know what he means from his description you probably haven't experienced it, I got it pretty immediately.

    I appreciate it's a bit vague, but there are no words for a lot of these sensations - apart from maybe Nuurghhh - but I may have mispelled that, and that word would only fit for the initial sensation.

    In over 20 years I have never been able to describe it in a form other people who hadn't experienced it could understand, they can see the effect it has on me both cognitively and physically, but understand an explanation - no chance.
     
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  3. Hip

    Hip Senior Member

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    If there are no words to describe it, how are you so sure the "horrible sensation" you experience is the same as the "horrible sensation" that @SmokinJoeFraz93 experiences?
     
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  4. Wonko

    Wonko Senior Member

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    The other side.
    There is more than one post in this thread.
     
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  5. Hip

    Hip Senior Member

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    @PatJ's said he finds sound and light exposure can result brain fog, poor balance, and nausea; and reading can result in head pressure and nausea.

    Is that then what you mean by the "horrible sensation"?
     
  6. SmokinJoeFraz93

    SmokinJoeFraz93

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    Sorry guys. It’s pretty hard to put it into words, so I thought “horrible sensation” would be quite accurate. I’d say it’s like an inflammatory feeling along with a type of stressful heaviness feeling in my head.

    And I feel these on a daily basis whenever I watch TV, listen to audio, read or write, as well as doing household tasks, having a shower, drinking coffee and so forth.

    It’s like I can’t do any of these things anymore. I get 2 hours a night of TV if I’m lucky. I can’t listen to audio long. I don’t read or write. Cleaning my bedroom and changing my bed is extremely mentally challenging.

    None of these derive from an emotional aspect. The closest thing I’d say is, is my brain is hyperaroused/hypersensitive to these stuff.

    Is that a batter description?
     
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  7. wonderoushope

    wonderoushope Senior Member

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    My level of functioning at the moment is not too bad. I finally got out of a bad phase about two months ago, most days I can do activities like do some cleaning, cooking, do a bit of shopping, do orders (I work for myself) and I even have managed to get out and do some gardening.

    I have been on a pretty strict elimination these last 6 months trying to figure out some of my triggers, which has helped I think to get the inflammation down in the body. But like always, there tends to be a pattern of me crashing eventually.
     
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  8. justy

    justy Donate Advocate Demonstrate

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    Its a good description, like @Wonko i got it from the original description anyway as i experience it A LOT. as soon as i try to work on the computer - including typing this, concentrate mentally or over do it physically i get this horrible feeling of pressure and inflammation and just general yuckiness in my head. I guess its what people mean by brain fog? but not sure as some people thing brain fog is cognitive issues like word retrieval issues.

    This is separate to cognitive issues, but cognitive function becomes worse for me when im experiencing the yucky brain stuff.

    I find resting with eyes shut or meditation helps, but as soon as i do anything it comes right back. I also get the symptom as part of PEM from overdoing physically which for me can just mean laughing or talking too much. Then it can go on for days.
     
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  9. SmokinJoeFraz93

    SmokinJoeFraz93

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    You’re describing the exact same as me!! It’s exactly what I feel.
     
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  10. Hip

    Hip Senior Member

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    If you feel it might be the "wired" hyperarousal that is behind it, then possibly some of the treatments on the following thread might help:

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    Supplements on that thread such as N-acetyl-glucosamine (NAG) 700 mg, kava kava herb and N-acetyl-cysteine (NAC) 500 mg in particular may be worth trying. NAG may be inadvisable in Lyme though, theoretically anyway.

    If it's a groggy inflammatory feeling of the brain, then I find chocolate helps reduce that. There is a study showing cocoa from chocolate is helpful for ME/CFS. I also found that acetyl-L-carnitine (ALC) 500 mg works even better than chocolate for the brain inflammation.
     
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  11. Hip

    Hip Senior Member

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    PatJ likes this.
  12. Wonko

    Wonko Senior Member

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    The other side.
    It's not the same as what I would describe as brain fog, brain fog is almost literally that, it's trying to think inside an increasingly small space, as the space gets smaller and capabilities become outside of the area that can be accessed ( think big room, single dimming light, you can only access things you can see, as the light dims, less capabilities can be used, less fully, until even mental movement becomes impossible). Pushing against this is possible, it's fog, upto a point it's soft, but pointless, as it simply results in the fog hardening (increasing in viscosity), discomfort and the light dimming further. It's unpleasant, it's limiting, if ignored it can be very unpleasant, and crippling - but it's not actually painful per say.

    That's one, far from complete, description of what I experience of brain fog.

    The "horrible sensation" is different. It's a pinching, crushing, ripping, tearing, both feeling very specific but vague, sensation. It is analogous to pain. One aspect of it, "I" am a vortex, the more I try and think the faster and narrower the vortex becomes, the rest of "me" is outside the vortex, my learned abilities/knowledge. I can, until it gets too fast, reach outside the vortex to use capabilities that aren't inside it, but as you would expect, reversing the analogy, shoving a hand into a hurricane to grab something inside it, control.accuracy is really quite tricky, and the process hurts. Trying to access them, the possibility/difficulty is dependant on the vortexes speed and how far outside it they are, how small the vortex is relative to that which is "me". The attempt hurts, speeds up the vortex, making the attempt more difficult, rapidly making it impossible, ripping at "me".

    The difference between brain fog and it may be analogous to the difference between walking through a field of sheets hung up to dry (can't see far, some resistance, trying to get anything done is, problematic), and repeatedly running nose first into a wall as fast as you can. *edited to add - or maybe repeatedly standing on rakes ala sideshow bob



    The only solution is to stop, everything, until things slow down again.

    Bonkers sounding I know, and not literal obviously, it's just a way of trying to explain a small part of it, a not very good or accurate way - but it was the best I could come up with a few years ago last time I tried.

    "horrible sensation" covers some of it, and is much more succinct, and doesn;t make the poster sound nuts, that description, plus other agreements, points raised in other post, matches what I experience, just using different concepts/words.
     
    Last edited: Dec 5, 2017
  13. PatJ

    PatJ far and free I gaze

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    For me, brainfog can be entirely mental without any associated physical feelings; although physical feelings like PEM can increase brainfog. I think of brainfog as the inability to focus, think clearly and deeply, have trouble finding words or putting thoughts into words at all, repeatedly mixing up meanings etc. but without any associated physical feeling. But there are also times when I have a physical feeling such as head pressure or something similar to a migraine without the pain (a weird, spacey, dissociated, blurred feeling), so brainfog can be experienced with or without physical sensations.

    Healthy people know what brainfog feels like if given the right example: a person who is intoxicated can have brainfog but be feeling really good. Someone with low blood sugar can have brainfog but feel fine otherwise. A person who has worked a long day and is exhausted usually has difficulty thinking clearly. Someone with sleep depravation is usually going to have fuzzy thinking.

    None of those examples equals the intense brainfog a person with ME can experience but at least it helps others to understand a little better.
     
  14. justy

    justy Donate Advocate Demonstrate

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    yes this is my horrible head feeling. Its like having cotton wool dipped in something thick and acidic inside my head. My eyes often feel a little burning at the same time.

    Its thick and hard and hot (without heat). Its a force ten hang over without a headache. a pressure between the eyes and all over the head, like the brain is inside a vice, but it doesn't really hurt like a headache. Its a little bit nauseous without feeling sick.
     
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  15. Mel9

    Mel9 Senior Member

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    I have had both brain fog and 'horrible pressure' and from my point of view they are quite different. They are also different from migraine type feelings. But Hip is correct: no-one can really know that the brain feelings we have are the same others feel.
     
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