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Peter Charlton

Brain hurts when I move my head or swallow?

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Probably not a Dysautonomia problem, but you guys might have an answer.

Deep in the back left half of my brain, I get a strong but dull pain if I swallow or move my head into a certain position. Any ideas?

I have suffered from feeling like a drunk zombie, balance issues, slurred speech, brain fog and Peripheral Neuropathy for two years now. I have also been seeing movements that are not there in my extreme right peripheral vision.

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I used to get head pain on movement when I had headaches.   Mentioned them to a neurologist who felt it was a migraine not headaches.   I get slurred speech when I am tired but is not related to a painful head.   Not sure what to make of peripheral vision movements.  May need to discuss your symptoms with your doctor. 

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1 hour ago, Peter Charlton said:

Deep in the back left half of my brain, I get a strong but dull pain if I swallow or move my head into a certain position. Any ideas?

Not sure if related but I used to get pain in one side of my head when swallowing - my chiropractor adjusted me and it went away. She said that there are muscles that connect the neck and the throat ( she actually showed them to me on a dummy ) that can cause this. I now do exercises to strengthen these muscles ( as per PT ) and I have not had this happen again.  

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I got a slew of testing last year after a lot of neck and head pain, visual disturbances, among other things. Turns out I was having vestibular migraine as a part of the POTS flare I was having. Not having experienced it before, it was pretty trippy. Google taught me a lot about it as well as my neurologist, who was pretty good.

Sounds like a neurology visit would benefit you if you have not gone already. Symptoms alone are not a good indicator of what's going on, in my case they found out what it was by ruling out the bad stuff (brain tumors, MS, etc) and putting me through a lot of testing. 

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I have a diagnosis of hypermobile EDS and am currently investigating the possibility of craniocervical instability. The symptoms you are describing, especially upon turning your head are consistent with this possibility (although there are also many other potential causes). 

I do not get most of these symptoms, I have severe POTS/OI and headaches, but many if not most people with this syndrome do have the neurological type issues that you do.

It may be worth reading about craniocervical instability and seeing if you think this may fit you. If it is something you feel you should pursue, it requires upright MRI scans, which unfortunately are not offered by the NHS but can be done privately in London, Manchester and possibly Leeds. 

You then send your images to a neurosurgeon who specializes in these disorders. I have been dealing with Dr Gilete in Barcelona.

Best wishes,

B xxx

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10 hours ago, bombsh3ll said:

I have a diagnosis of hypermobile EDS and am currently investigating the possibility of craniocervical instability. The symptoms you are describing, especially upon turning your head are consistent with this possibility (although there are also many other potential causes). 

I do not get most of these symptoms, I have severe POTS/OI and headaches, but many if not most people with this syndrome do have the neurological type issues that you do.

It may be worth reading about craniocervical instability and seeing if you think this may fit you. If it is something you feel you should pursue, it requires upright MRI scans, which unfortunately are not offered by the NHS but can be done privately in London, Manchester and possibly Leeds. 

You then send your images to a neurosurgeon who specializes in these disorders. I have been dealing with Dr Gilete in Barcelona.

Best wishes,

B xxx

Thats interesting, two other symptoms I didn't mention, I have a crick in the neck, so I lean my head to one side and get a massive click. I also described feeling as if I had been injected with a local anesthetic, like you get at the dentist, in the back of the neck, so my neck was numb, had this for at least a year but dont notice it so much now.

As for the pain in my brain, its still there, but not to the extent it was last night.

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Glad your head is a bit better. Those symptoms could def be coming from your neck. I hope you manage to find some relief.

B xxx

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