The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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What weird, medically vague symptoms other than your fatigue do you have (pressure, vibrating, etc)

Discussion in 'Neurological/Neuro-sensory' started by Lalab, Nov 28, 2015.

  1. Lalab

    Lalab

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    Curious about this since this condition tends to be associated with weird and sometimes unexplainable symptoms (ex: brain shocks, weird tingling, etc).

    For me, they are:

    Neurological (causes the most deficits): a PHYSICAL feeling as if parts of my brain are blocked, like a couple of arteries are closed or something. This is an actual PHYSICAL feeling. I also get a buzzing in different parts of my brain for a few seconds as if a cellphone on vibrate mode was put on the edge of my skull.

    I also sometimes get a “brain shock” where the back part of my brain feels light-headed and then suddenly my head jerks and moves on it’s own. I believe this to be a form of a myoclonus.

    Leading immunologists that I've talked to mention that these might be immune mediated responses in the brain that will be more widely recognised in the future as research in this field takes off (which it already has)

    Other: Often I get this sensation of pressure all across my face and teeth as if someone had put a tight mask over my face. If I press on parts of my face where this pressure is, often times it increases.

    Checked my teeth and sinuses and all came back normal.

    Tell me about your weird symptoms folks! Appreciate it.
     
  2. worldbackwards

    worldbackwards A unique snowflake

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    I get all that. I think it's similar to the heavy aching feeling I get in the limbs - I often feel like bits of me are being pressed down upon. Often the thing with the teeth comes at the same time as an uncomfortable pressure in my chest. Quite alarming really but I've never died yet so best not to make a fuss.
    Leading immunologists don't give a shit about my symptoms. Maybe I'm doing it wrong :)
     
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  3. SOC

    SOC

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    I wonder if leading neurologists would take the same position. :)

    It gets complicated when we're dealing with a neuroimmune disease. The neurologists want the immunologists to take charge and the immunologists want the neurologists to take charge. Therefore no group is willing to dig down and sort out what's going on. :rolleyes:
     
  4. worldbackwards

    worldbackwards A unique snowflake

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    Wonder no more.
     
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  5. SOC

    SOC

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    o_O

    No luck with leading neurologists, either? Sigh.... I get that facial pressure may not be up their alley -- that could be any number of inflammation issues, I imagine. But brain shocks, buzzing, twitching, and jerking should interest a neurologist. Yeah, I know, it should, but....

    Who are these leading immunologists and neurologists? Where are they practicing? Any hope we can send them information in the hope of educating them? It's bad enough when local specialists don't give a darn, but when it's leaders of the field it's even worse because they influence those under them.
     
  6. worldbackwards

    worldbackwards A unique snowflake

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    I may have led you to believe that I have actually seen leading neurologists and immunologists. Sadly I have to inform you that I live in the UK. The closest I ever got to a leading neurologist or immunologist is when they possibly walked past me 15 years ago when I was still judged well enough to be carted along to the the hospital to be patronised every few months by someone who didn't know what they were talking about.
    Mythical beasts, chimeras, they wake on the full moon at sundown and indulge in orgiastic rituals and blood sacrifices, before repeating the timeless mantra, "are you sure it isn't functional?" and retiring to their lair, lest they be obliterated by the rays of new morning. Arise!
     
    Last edited: Dec 1, 2015
  7. halcyon

    halcyon Senior Member

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    They didn't call it encephalomyelitis just for fun. With the past findings of ganglionitis and brainstem perfusion defects, I don't think anyone should be surprised that we have symptoms involving functions of the cranial and spinal nerves.
     
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  8. SOC

    SOC

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    :(

    Amusing, but sad.
     
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  9. lnester7

    lnester7 Seven

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    Drop things, pupils dilation ( I have OI), can't swallow ( hurts like a mother &&&&), when brain is too swollen: paralysis where I loose consciousness up to 16 hours can move or ask for help, I have cried in impotence. Disorientation, black out time periods... Feel burning alive specially in brain and spine...... We can be here all night
     
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  10. Woolie

    Woolie Senior Member

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    Funny thread! To get back to @Lalab's question, mine is odd facial twitches, especially eyelids. When it happens, I must look like some sort of grotesque witch.

    Still, @Inester7, reading what you just wrote, I have nothing to complain about. :(
     
  11. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Does anyone else get woken in the night feeling like they can't breathe because their throat is constricting? GP is confident it's not sleep apnea. Cardiologist doesn't think it's POTS meds. It seems a bit allergy like but it goes when I wake up. I think it may be more POTS/Dysautonomia than ME because I've seen other potsies describe something similar on Facebook but their doctors don't really understand either.

    It's scary but nobody seems to think I'll actually stop breathing so I'll just carry on!
     
  12. CantThink

    CantThink Senior Member

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    @Jenny TipsforME

    Have you been evaluated for GERD?

    @Lalab

    Some things I have gotten:

    Sensation of water running down my leg and/or heat as if leg next to radiator.

    Eye twitching.

    Pins and needles in palms.

    Feeling of pain in my brain or as if I can sense my own brain if I try to think hard when I'm extremely fatigued/have PEM.

    Weird pain in my back - very random & occasional sharp stabbing pains that completely immobilise me until they stop.
     
  13. daisybell

    daisybell Senior Member

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    @Jenny TipsforME have you tried sleeping more propped up? Or put a couple of bricks under the legs of the bed at the head end.... Sounds like your breathing problems at night could be related to GERD to me!
     
  14. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @daisybell @CantThink it's a good suggestion. I've just looked it up and nocturnal choking is a symptom of GERD. I don't get a burning sensation though at the time or feel acidy to memory so I'm not sure. Generally I don't have problems in that area but I do feel acidy today. I'll try using my triangle pillow at night.
     
  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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    FYI if other people experience it this seems to fit my experience:

    Another possible cause is seizure but I think GERD causing sleep-related laryngospasm is much more likely.
     
  16. daisybell

    daisybell Senior Member

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    This is what it sounds like to me from your description. It can be quite scary when it happens. Sometimes, during an attack, if you can purse your lips and breathe so that there is air turbulence at your lips (like breathing slowly through a straw), the spasm at the level of your vocal folds will reduce. Creating a narrow passage for the air at your lips slows the airflow and the narrowing at the vocal folds then reduces....
     
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  17. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @daisybell thanks, I'll try that. I got it again last night despite raising myself up on a sloped support pillow. I took a swig of Gaviscon and think it might have helped but it wasn't obviously the problem. Tonight I'll take some as a preventative measure.

    It's amazing what you can find out from pwme that flumuxes practicing doctors! We should get honorary medical qualifications...

    Sorry this has diverted the thread a little. I'm interested in detailed descriptions of symptoms partly because I'm attempting to write a novel about an intentional community of pwme, health allowing. I'm trying to have them have different symptom clusters to reflect the diversity of experience within the diagnosis ME/CFS (rather than just describing my experience). Even common symptoms like "fatigue", "muscle pain" are probably experienced as very different sensations.
     
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  18. ohallboyz

    ohallboyz

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    I saw a really great neurologist and I described all my symptoms to her (and at the time had just been diagnosed with hypothyroid). But one of the symptoms I described was that feeling of having a complete block in my brain. She did an MRI just to rule out MS, because at the time that is what I was worried about. I had two spots on my MRI, and whoever read the report said it was still normal. The doctor that I'm seeing now said it's clearly not normal, and I have no idea if the spots on the MRI have any relation to the blockage I feel in my brain. I also have sound sensitivity and light sensitivity, and poor executive functioning. My memory isn't the greatest either.
     
  19. AlmostEasy

    AlmostEasy

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    Do you have any sort of confirmed diagnosis for your symptoms prior to this? Any tests that reveal anything? 23andme data?

    I have fairly severe cognitive symptoms but my MRI was supposedly crystal clear. Perhaps I should get it re-looked at.
     
  20. ohallboyz

    ohallboyz

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    @AlmostEasy , At the time I had CFS & parathesia and was just diagnosed hypothyroid (sort of). That was in May of this year. A month later I was diagnosed with Lyme and in October diagnosed with Mold Illness.

    I have done 23andme, are you referring to markers for MS in the genetic data?

    The report for my MRI listed that I had two 'flairs' - I can get the specific notation if that helps. I have not gotten the images yet but I plan on it. I am going to find someone else to look at it. I know there are specific criteria for MS - but I feel that the hypothyroid symptoms I was having were mimicking MS. I still have cognitive issues, executive functioning issues, word recall issues, and I know my memory is not the same, and it could be from Lyme and Mold.
     

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