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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Pressure/flexing sensation in face and neck

Discussion in 'General Symptoms' started by Cheesus, Jun 18, 2017.

  1. Cheesus

    Cheesus Senior Member

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    Description:

    I have a constant fluctuating sensation in my skull. It feels as though my head is constantly flexing/bending in irregular patterns. The focal point of the sensation is between my eyes - around the area where the frontal bone meets the maxilla and nasal bone - but runs generally throughout the face, through the sinonasal area and into base of the cranium and cervical spine.

    The sensation can also be felt through the mandible - usually my lower teeth - but it is typically much less pronounced than the areas between the maxilla and cervical spine.

    There are typically no sensations in the top/back of the cranium or hard palate, unless it is particular severe in which case the sensation runs throughout my entire head. These bouts are quite rare.

    Following a significant bout of these strange sensations in my head, I felt a large movement around the atlas vertebra/occiput. Since then, there is a very loud sound of blood pumping in my right ear. This would be consistent with the carotid artery putting pressure on the inner ear, or some similar phenomenon.


    Other signs/symptoms:
    • The flexing sensation can be so strong as to feel my nose is going to break. It is not subtle or mild.
    • This happens 24/7. It never ceases.
    • Sinuses do NOT feel full or pressured as with sinusitis.
    • It is more pronounced when I am lying down.
    • I will sometimes feel some brief post-nasal drip if there is a particularly pronounced surge in the sensation, but this is rare. Usually my upper airways are clear with normal mucous secretion.
    • There is generally no pain associated with the sensations except in very rare circumstances.
    • I am confident this is a peripheral rather than central phenomenon, because I sometimes hear things clicking in my neck; my upper teeth shift against their neighbours as the maxilla flexes; and something has moved in my head/neck to accentuate the sound of blood pumping in my right ear. If it was errant sensory information within the brain that would not happen.
    • These sensations initially began around 5 or 6 years ago during the prodromal phase of my ME. At the time they were much less pronounced and typically only occurred when lying down.
    • Typically the sensation will actually increase as I go through a period of improvement in my ME, and decrease during periods of decline.
    Hypothesis

    1. Sinonasal smooth muscle is spasming. This may be in response to:

    a) An endotoxin from an atypical sinus infection (however this cannot really explain why the sensation also occurs in the cervical spine.)

    b) Errant information from the brain.

    Does anyone have any ideas or suggestions? I had an appointment with a neurologist a while back, but he told me it is happening because I am "thinking about it". I have been denied a second opinion on the grounds that one is good enough (such is the state of the NHS), but I am currently fighting that decision. I tried to get a private appointment but was denied that too (I can't remember why).
     
    Last edited: Jun 18, 2017
    merylg likes this.
  2. raghav

    raghav

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    @Cheesus Do these symptoms worsen after breakfast or in general after taking food ? Are you seeing any pattern in the symptoms increasing just before bowel movements and clears on passing stools ? Do you have pressing sensation in your eye balls ? I would suggest that you consult a gastroeneterologist . It could be a case of intestinal dysmotility. Low motility and peristalsis of the intestines. Does your heart rate increase after having food, especially breakfast ?
     
  3. Cheesus

    Cheesus Senior Member

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    @raghav

    No, I don't get anything like that. I haven't noticed any relationship to food at all. I also typically do not get pressure in the eyes.
     
  4. raghav

    raghav

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    I would still insist on seeing a gastroenterologist. Ask him to give you medicines for increasing gut motility. Try it for 2 weeks. Symptoms may clear. Also ask your neuro for a EEG. Insist on it.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    I'm sorry but this is the stupidest thing I have ever heard (the Neuro, not you) and I have no patience or tolerance any more for doctors who say things like this. I have never experienced what you wrote about but I often have excruciating pain on the right side of my neck which radiates to my right shoulder and down my right arm. When it is very severe, I have to lie down and put ice pack on it and take pain pill. Other times, like right now, there is no pain. It has absolutely no relation to whether I am "thinking about it" and it is either there or it is not there. Hoping you can see another Neuro (although in my experience, the Neuros are the worst of all docs and were not able to help me with any of the medical issues I am addressing).
     
  6. Cheesus

    Cheesus Senior Member

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    @Gingergrrl

    Yes, it is incredibly aggravating. If you come to a doctor with a hypothesis that has no evidence, they will treat you like you're an idiot. If they present a hypothesis with no evidence, it suddenly becomes a factual evaluation of the state of you health. Hypocrites.
     
    Gingergrrl likes this.

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