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:
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).
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.
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).
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