Head/neck possible contributor to POTS

[HopeSprings]

Have you guys read about this Dr.? He feels there is a link and was doing surgeries, but then his medical licence was suspended (then reinstated) - although patients seem to really like him.

http://www.nfra.net/...ia_rosner_4.htm

[sue1234]

Naomi, in reading about this doctor last week is what got me started on this whole topic(after reading about the astronaut's dilemma). I did read about Dr. Rosner and he actually did decompressions years ago on people with CFS and THEY GOT BETTER!

I started reading back in our forum at the polls for various symptoms, and, in my opinion, we have some symptoms that are "just part of POTS". Those symptoms can actually be part of problems with cranial nerves and/or brain/cervical compression. I read somewhere where someone is not able to control their bladder and it just goes without being able to control it. That is not POTS, that is a brain or spinal cord issue.

Of course my neuro from two years ago was the first doctor to do a cervical MRI and a thorough cranial nerve test in his office. I was surprised to find that I failed a few. At the time, he also said he didn't think it contributed. But, I am beginning to think it really could. Katy, like you said, have anything affect the spinal cord at a certain point and it is bound to affect things at and below that point.

I am going to a new neuro appt. at Mayo in April. Believe me I will be discussing my neck issue and how if might play into this. Funny, I went to Mayo to address my worst problem--hypoglycemia. In the end, I may be helping my POTS more.

[HopeSprings]

Of course my neuro from two years ago was the first doctor to do a cervical MRI and a thorough cranial nerve test in his office. I was surprised to find that I failed a few.

Sue-Interesting - how do they test cranial nerves? One of the weird symptoms that came with this for me is facial asymmetry - a neuro-otologist actually pointed this out and told me it appeared one side of my face wasn't working as well as the other. He promptly sent me for an brain MRI looking specifically at cranial nerve 9? (which ever one controls the face) (looking for a tumor) - it was negative. I know you've mentioned a droopy mouth- wonder if it's connnected?

[Ashelton80]

I've had neck issues as far back as I can remember. Even as a child. I'm married to a chiropractor. 9 out of 10 people he x rays have lost their cervical curve which can put tremedous pressure on the spinal cord. The adjustments can definitely trigger tachycardia because I am so hypersensitive. I had to switch to a different more gentle technique called Atlas Orthogonal. It has been life saving for me and a big piece of the puzzle to doing well. I don't believe for second that bulging disks, loss of curve, subluxations etc have nothing to do with autonomic dysfunction like some of those MD's said. I've seen firsthand how my neck effects me physically.

[jangle]

I definitely believe neck tension has an effect on cerebral perfusion. I notice a well executed self neck massage can alleviate my pots- tension headaches and allow me to think clearer. Sometimes I think it helps my lightheadedness too.

Julie interesting you should mention that. I also get the strong desire to clench my teeth and often have the tongue reflex up to the roof of my mouth. This just happens automatically.

[corina]

sue, i'm one of the people who lost bladder function (and more) but the strange thing is that once i started octreotide my bladder function (and more ) is back to normal again. i really can't explain but it really makes me a very happy lady!

[jangle]

You know how compression on the median nerve can cause carpal tunnel syndrome, I wonder if compression on the vagus nerve from neck tension or a malformed anatomy surrounding the vagus can cause dysautonomia?

[janiedelite]

My physical therapist is a specialist in myofacial releases. I went to her mostly for pain relief, and she's been super helpful. But she also surmised that relaxing the fascia around my vagus nerve would help my autonomic issues. It hasn't. But I'm still so pleased with the level of pain relief I've received.

[Clairefmartin]

This all made me think of the Driscoll Theory as well (at www.prettyill.com). Connection between POTS, MCAD, EDS and increased fluid in the brain.

How do they measure if your cranial fluid is high? Does anyone know? Sue - your logic in your original post is VERY intersting (in my opinion!), thanks for posting!

Claire

[foggy_brain]

"I also get the strong desire to clench my teeth and often have the tongue reflex up to the roof of my mouth. This just happens automatically." (Jangle)

Same here -- for relief in my case, and the more the better.

[issie]

Bruxism (clinching and grinding of teeth) - can be from a B5 or magnesium deficiency - affects from the adrenal glads also.

Issie

[Dizzysillyak]

Interesting thread. thanks ... I've had 4 whiplashes and a concussion from being thrown in 3 feet of water onto my head. It was one year post 2 of the whiplashes back to back that I got ME/CFS/OI. It's interesting to me tho that my neck and shoulder symptoms (constant spasms) went away about 4 years after changing my diet. 2 years post low oxalate and paleo. Although like others have said I feel weird if I try to talk with my head turned.

tc .. d

http://www.nfra.net/fibromyalgia_rosner_4.htm

Cranial Nerve deficits: 14/37 demonstrated unilateral or bilateral Horner’s syndrome. 21/37 had CN V abnormalities including absent corneal reflexes. 7/17 demonstrated CN VII abnormalities (not including dry eyes, dry mouth, or hyperacusis) and 17/37 had abnormalities of hearing (not including tinnitus). 20/37 had CN IX, X, XI abnormalities, most commonly absent gag reflex and oropharyngeal sensory changes.

Abnormalities of convergence, nystagmus, head tilt, skew deviation, esophoria and tongue weakness were common. Upper extremity motor deficits were identified in 36/37 and 35/37 in the lower extremities.

Hyper-hypotonia and atrophy were frequent. 32/37 had abnormalities to pin, touch, vibration or temperature sensation. 24/37 demonstrated hyperreflexia, and 17/37 demonstrated hyporeflexia. 34/37 had abnormalities of gait, 27/37 a positive Romberg’s sign and Babinski’s and Hoffman’s sign were present in 18 and 8 of the 37 respectively.

Conclusion: Neurological deficits can be identified in those patients with NMH/POTS. These deficits localize to the brainstem .and upper cervical spinal cord and when identified should lead to a detailed radiological evaluation of these regions in search of remedial compression.

[bellgirl]

My tongue would spontaneously being pressed to the top of my mouth when I turned my head even when I was a child, and a headache ensued at the same time; like there was a direct line (electric like nerve pain) from the back of my head and neck, that would last for about 5 seconds and go away. My parents never thought much about it, but I am now!! Vagal nerve issues, with kyphosis even back then...hmm

[bellgirl]

Sorry...Correction to above comment. My tongue was depressed, and I couldn't lift it. I had no control of my head, neck or tongue for those maybe 10 seconds, which seemed like an eternity to me, as a child!

[Katybug]

Holy Cannoli!!!! Do you know how many of those weird neuro symptoms I have that are mentioned in that quote regarding cranial nerve deficits!!?? I just recently received the report from my upright MRI and I have spondylosis in C2-3 through C6-7. I also have three cervical discs that are impinging on my spinal cord. Working on all the paperwork for the neurosurgeon right now.

[bellgirl]

I go to my neuro in March, and I will definitely ask for an MRI of my spine!! I've always wanted one....Thanks Katybug . Claire, they can measure the pressure of spinal fluid through a spinal tap, btw.

[badhbt]

I have had a spinal deformity OS odontoidieum since birth. I didn't find out about it until recently. When my symptoms started in August we decided to do surgery in October. I had a C1-C2 fusion October 25th. I am still in a neck brace, hopefully for 3 more weeks. During my recovery I was diagnosed with POTS. My symptoms have gotten better, but are not totally gone. I hope this surgery helps. I did have cervical stenosis.

[Altruism]

I learned so much from all of you! I have 2 stand up MRIs on my to do list - 1. BRAIN MRI - done - to rule out MS and Chiari (it's normal, yay!)

2. Cervical spine (next month) - to rule out cervical stenonsis and... not sure what else.

What would be the treatment if I have cervical stenosis and how likely is it to be causing POTS?

What other neck issues could be causing POTS? My PCP is so uninformed, that I have to make all the decision and tell him what to refer me for LOL

Also, do I need flexion and extension for my neck MRI?

Thanks!

[Katybug]

I don't know enough about this whole thing yet to give you good educated answers, Altruism. I'm just stepping into this phase myself. But I do know that abnormalities /instability in the c-spine can contribute to autonomic dysfunction and /or cranial pressure issues which in turn can cause POTS /NCS.

[badhbt]

Alltruism,

If you are looking for cervical stenosis then a extension/flexion MRI would be helpful. It would depend on what is causing the stenosis. If you have disc degeneration, or deformity then surgery would be the answer. I am not sure if fixing the cervical stenosis gets rid of the POTS. I had surgery in October, I am getting better, but I don't know how long it takes for cervical stenosis to resolve itself...or if it does. I had no symptoms from my neck. It was actually broken and pinched the spinal canal when I moved my head up or down. I am hoping my surgery is my fix....only time will tell.