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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. SmokinJoeFraz93

    SmokinJoeFraz93

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    I’m unable to read, watch TV, listen to the radio or even go on my phone for long periods of time. When I do these things, I feel a horrible sensation in my head, so I have to stop.

    Any ideas what it could be please? I’m really annoyed because I’m literally doing nothing with my days, and it’s such a drag. Thanks.
     
  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Im thinking lack of cell energy in the brain.
     
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  3. wonderoushope

    wonderoushope Senior Member

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    Not anxiety?
     
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  4. SmokinJoeFraz93

    SmokinJoeFraz93

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    No, it’s not anxiety. It’s like a horrible sensation in my head, and I have to stop whatever it is that’s causing the sensation.
     
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  5. wonderoushope

    wonderoushope Senior Member

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    Just that I had something similar tonight (I've had it before) and now I think it's a mixture of anxiety and hyperglycemia. It's a really yucky sensation. I can't think straight, I get impatient and angry, just want to push everyone out of the way and feel light headed. You should have seen me at the supermarket tonight, trying to get the grocery basket out of its position ( I could have strangled that thing), was insane! The customer service rep, was like "let me help you!".
     
  6. mattie

    mattie

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    Sorry to hear that SmokinJoe.
    On really bad days (most days lately) I am having the same symptoms.
    All I can do than is lie down and do nothing and wait for my head to become a bit more clear again.
    It can take days, weeks.
    Doing (almost) nothing all day everyday is tough. And that is an understatement.
     
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  7. SmokinJoeFraz93

    SmokinJoeFraz93

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    I feel your pain. Thanks mate.
     
  8. Jesse2233

    Jesse2233 Senior Member

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    O2 supplementation might help by oxygenating starving brain cells, or HBOT
     
  9. Kenshin

    Kenshin

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    I get this, horrible sensation is how I would describe it.

    Sometimes it's like a 2 second zap that feels like everything is drained from your skull?

    Other times you can't focus on anything, and must close eyes and lie down.

    Both are strong and disturbing symptoms, I'm also interested to know what it could be, possibly its to do with overstimulation.
     
    Last edited: Dec 1, 2017
  10. PatJ

    PatJ far and free I gaze

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    Does the sensation intesify the longer you do the activity? And does the sensation take longer to fade if you spend longer doing the activity?

    I get this but I can also have poor coordination, speech difficulty, nausea, and poor balance.

    Here are some specifics in case you also exerience these effects:
    * Sound: I can't listen to any noise that comes out of a speaker because it causes brainfog, poor balance, and nausea. The more I push it, the more sick I will feel. Vestibular hyperacusis is the closest medical term that I've found to describe what happens.

    * Sound: Rapid, repeating sounds cause similar problems.

    * Light: LED and most flourescent lighting cause the same sensations in my head. LED is much worse and causes symptoms to arise more quickly. I can't use regular computer monitors because of this problem. I have to rely on an old laptop with a faded screen, dimmed, with light text on a dark background to reduce the light exposure. This light on dark setting helps a lot.

    * Reading: I can't read anything on paper anymore without rapidly (ie. within a single paragraph or two) experiencing head pressure, nausea, etc. that can last for up to 24 hours if I try to push it.

    I think this has to do with neurological kindling and maybe partial brain seizures. I used to be able to read on paper but in moderation due to fatigue. A couple of years ago I pushed reading far too much over a couple of days and something 'broke' in my head/perception. This is why I think neurological kindling is involved. I'm now super-sensitive to reading text on paper.

    Weirdly, I can read text on screen. I think this is because screen based text is known to engage more areas of the brain than reading text on paper. When reading on screen, maybe something in my brain is countering the effects that occur in my brain when I read on paper.

    I've noticed that I start to feel ill when I engage in tasks that require a lot of repetition (doing, or perceiving). Drawing too long can do it, doing the same origami shape more than a few times can do it, seeing or hearing anything that involves rapid repeating patterns can do it. This is why I think partial brain seizures may be involved because certain types of repetition is a known trigger for some people with epilepsy. Maybe ME induces a lower seizure threshold for some of us.

    Another idea is that it's a sort of induced migraine (migraine and epilepsy overlap in some ways). I used to get migraines in the past and have noticed some similarities between migraines and the symptoms I experience now.

    Just the ideas listed above and the idea that it's probably related to overstimulation due to exertion. It's times like this where the IOM definition of "Systemic Exertion Intolerance Disorder" makes a lot of sense.

    Sitting in a quiet field on a warm day is generally relaxing and doesn't require much in the way of exertion. Add a radio and now your brain would be processing more information, exerting itself more. Watching a movie requires even more exertion because now your brain needs to process video as well as audio. Add subtitles to that movie and there's even more processing from text shape recognition and interpretation and coordinating the text with the onscreen events. Even though you're just sitting there, your brain is doing a lot of work.

    All this exertion is something healthy people can handle well for long periods but can be a severe strain even in short durations for people with ME.

    I'm severely limited in what I can do. No TV, no radio or music, no reading on paper, limited reading on screen, no board games that involve text or complex thinking, limited ability to draw due to muscle fatigue, can't meditate due to ME induced narcolepsy, can't exercise or even leave the house because I'm partly bedbound due to OI and fatigue.

    So I spend a lot of time in my imagination. I imagine stories, imagine what different occupations or experiences might be like, try out scenarios where my life might have been different if I had made different decisions etc.

    When I first started doing this I noticed that after a week or so I was getting better at it, with more vivid images and details in my mind. Now it's like living in a story with different characters that have their own personalities and sometimes even surprise me with what they say. I've read that authors notice this effect. They imagine detailed characters and a certain story line but then the characters gain a sense of life and take over the story in unexpected ways.

    I'm so deeply limited in what I can do with my body, so I spend most of my time in my imagination.
     
  11. Kenshin

    Kenshin

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    I always thought it was easier to read on screen because I generally read short paragraphs on forums etc rather than walls of complex text in a book, but maybe there is something more to it.

    I've given up trying to watch movies with subs, causes "brain meltdown"...No foreign cinema for me lol.
     
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  12. SmokinJoeFraz93

    SmokinJoeFraz93

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    Waw!! Thank you for such a lengthy reply. This sounds a lot like me! I am amazed. Would it be worth seeing a neurologist? Or wouldn’t they pick it up whatever it is that’s dysfunctional?

    Thankfully I’ve always had an amazing imagination. So I find myself in bed imagining all sorts! :)
     
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  13. Dechi

    Dechi Senior Member

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    You probably have hypoperfusion in the brain, like most of us do. If you overdo it, this weird sensation appears. I have it too and I know that I have to rest more to make it go away.
     
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  14. PatJ

    PatJ far and free I gaze

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    I've seen three neurologists, a neuro-opthalmologist, a psychiatrist, and multiple GPs.
    1) One was a former migraine specialist and focused on the symptoms he recognized, my history of migraine in my teens, and white matter lesions in my brain; then prescribed various ineffective meds (although Sybellium/Flunarazine worked quite well for a week then quit; this was before my ME became much worse).

    2) The second neuro told me 'I sure am glad I'm not in your position' (three times!) and refused to do any testing such as an EEG that might show brainwave problems.

    3) The third neuro was very self absorbed, got totally off track focusing on an episode of Transverse Myelitis I had in 1991, and didn't do anything except refer me to a psychologist... after saying most of them are quacks.

    4) The neuro-opthalmologist thought the light/monitor problems might be related to micro-seizures in my brain.

    5) A psychiatrist told me the problems were biological, and there was nothing he could do. I was thankful that he didn't suggest meds.

    6) The GPs had no idea what was going on.

    Considering how weird ME is, I'm staying away from neuros or other doctors who are good at focusing on what they recognize while ignoring what they don't. I'm also tired of meds. I'm waiting for the day that someone actually figures out ME and comes up with a treatment or cure.

    The only things that have even slightly helped to reduce my light related symptoms are high quality glutathione (I use Terry Naturally Clinical Glutathione), LDN, and anti-inflammatories like flax oil. Proteolytic enzymes help as well (they're good at reducing inflammation) but I started have pain from them, I think from my pancreas.
     
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  15. Tally

    Tally Senior Member

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  16. SmokinJoeFraz93

    SmokinJoeFraz93

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    I keep coming across LDN quite often! What symptoms would this help? And where Can I get it In the UK? Thanks.
     
  17. PatJ

    PatJ far and free I gaze

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    That's an interesting article. This excerpt talks about the lowered seizure threshold:
    Here's a good reason to avoid pushing when feeling overloaded:
    Klonopin and magnesium are recommended for being neuroprotective. I already take magnesium but am very wary of benzo meds (klonopin). The article, and comments, covers more about klonopin.

    It helps me to think more clearly, sleep better, and stabilizes my mood. I checked my health notes and apparently it helps to reduce my light and sound sensitivity a little as well. I've been on it long enough that I had forgotten about that.

    I got mine from buylowdosenaltrexone.com. I started at 0.125mg/day and very slowly worked up to 4.5mg/day. I had anxiety and didn't feel very good at 4.5 so after some experimenting found that 2.5mg/day is a good dose for benefits without drawbacks. My dismal sleep (before LDN) was even worse after I started, until I stopped changing the dose, but after that my sleep has been better. I still need other sleep supplements to get a decent night of sleep.
     
  18. justy

    justy Donate Advocate Demonstrate

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    Its definitely not anxiety - its common, im afraid, in more severe M.E. I get it every day. I also wonder if it is linked to Dysautonomia in some way.
    What is your level of functioning?
     
  19. Kenshin

    Kenshin

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    I wonder if gabapentin could help calm neurons? (As an alternative to Klonopin)

    Edit: Just saw this from the Cheney article:
    ............................................................................................
    "On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

    1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine)
    2. Histamine blockers (Doxepin Elixir)
    Under the category "GABA Agonists" (increases GABA) Cheney lists:
    3. Klonopin
    4. Neurontin
    5. Kava Kava
    6. Valerian Root"

    ......................................................................................................

    Neurontin is Gabapentin, though it doesn't seem to be mentioned again in any more detail, would be interested to know Cheney's protocol with Neurontin, not to mention the herbs Kava and Valerian.
     
    Last edited: Dec 4, 2017
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  20. Silence

    Silence

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    LDN also helped my kindling and neuroinflammation- my sleeps got much better, I could think clearer, get less headaches/migraines, get less brain burning, zapping, lactic acid feeling, seeing zig zags, light burst, lowerd ear ringing (tinnitus). and increased my energy levels modestly. I would second the LDN and say give it a try. Its relatively cheap, side effects are tolerable if you go slow, and effects are very effective for some. The only thing to watch out for are the beginning start up symptoms.

    I also found vallium helpfull, but thats a route not a lot of people want to go on due to tolerance and withdrawal. But it is effective in controlling my excitatory symptoms- whether due to overstimulaton, oxadative stress, overactive microglia or something else.
     
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