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POTS and neck problem

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So my Orthogonal Intolerance is getting worse. It started 2 months ago and now I am flat or nearly flat for 22 hours a day or more. I do this to try to lower the malaise, and not to crash, and I have heard here that rest and not pushing and crashing is super important. My pulse is starting to rise resently when I stand up, maybe from 80 to 110 or 120, not sure. Sometimes I can raise my head a little to be in computer, sometimes not.

I feel fresh generally. But I feel weakness in arms, hands and chest. I pee more than I am used to.

I have noticed pressure or stiffness in my neck for the last days. It often gets worse when I stand up or raise my head. (history: I have been having, according to my notes some pressures in head and neck, and sometimes other scary weirdness )

Yesterday I went to the ER again, because of my neck because I thought it might be important to treat it soon.

She examined me, checked balance, muscles and many things, all was well except when she pushed the highest vertebra I got extemely neuseous and then I cried out of nowhere for 30 seconds or more. It was to me really clear. No other points on me had any reaction and I didnt feel emotional or nauseous at all. But when she pushed there (after I told her I was feeling weak there) I got a super clear reaction. She thought it was strange and thought it maybe connected to emotional issues, which sounds very unlikely to me.

This area feels much more vulnerable now, after she pushed. It felt like it was radioactive: do not push :) But very little pain.

In the evening my neck felt bad in a way I have never felt before and I was scared of damaging my neck. It has been acting up now and again today. I feel numbness and like something is swollen there. Sometimes it gets worse.

My situation now:
  • I sometimes have problem opening my mouth wide cause something feels swollen.
  • I feel more nauseous now, if I lay badly or walk around. I usually dont feel much nausea.
  • I feel more weak when I stand and hazy or numb or something. I have more fainting feelings. I was trying to find something in a box for one minute and felt dizzy and uneasy. Shortly after I just had to lay and felt like something was swollen back there, didnt know how to lay.
  • Some memory problems.
  • I dont feel particularly anxious, surpricingly.
  • small headache but not much pain generally
  • Numbness in hands, feets and chest are I think worse.

Any advice about what is going on, what I should do to at home to protect and what to do with doctors?

Thank you :)
 
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Sorry this is not very clear and organized.

I want to add that I now feel there must be a problem connected to the highest vertebra just below my skull, that I can touch. It feels like something is wrong there. The muscles are not swollen, but it feels like something might be and a strong feeling of not pushing, strange feelings there. Maybe that's why I feel like I shouldn't open my mouth too much sometimes. And chewing can feel uncomfortable. But like I said, not much pain in my body.

And the doctor in the ER yesterday didn't worry too much. Wanted me to follow up with my home doctor and maybe look for a psychiatrist. But this suspected swelling and new things have happened since then.
 
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But this suspected swelling and new things have happened since then
One of the presentations at the NIH last week included the X-ray of a young gal with cervical spinal stenosis and that included something was bulging out, seen in her exrays. Sorry I am forgetting which presentation it was but it must have been POTS or OI related.

Having alot of neck issues here....
 

echobravo

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Have you followed the recent threads on CCI/AAI, hEDS, chiari etc and how they might cause the ME/CFS symptoms and an array of neurology related issues, including dysautonomias like POTS, OI.

https://forums.phoenixrising.me/thr...ocervical-and-atlantoaxial-instability.62164/

jeff_w was the pioneer in these discoveries, check out his threads.

The cranial-atlas joint (C0-C1) is an area with a huge amount of neurology going on and can be the source of so many symptoms and dysfunctions.

One year ago I had what I believe was a spontaneous relocation of my atlas-caput joint on the left side - it happened during headstand in yoga (not recommended). I immediately had huge relief of symptoms and my healing is continuing to this day. I believe the atlas dislocation happened 40 years ago in a bicycle accident, when I smashed into a car head first - it had stopped to pick up someone in front of me. High speed & downhill. Only about 30% (pubmed) will survive such trauma when the head is actually "ripped off" from is foundation (the spine).

Maybe someone in the forum have a good doctor to recommend.
 
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Can CCI/AAI start to happen so fast?
Could it fit my reaction when the highest visible vertebra was touched? And the feeling of something being wrong there, especially when I touch?
@echobravo I have been doing headstand for a year on and off. I live in Iceland and don't know the doctor options there.
 

Judee

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I know that the headstands worked for @echobravo but we know in this disease that what works for one may not work for another.

I just wonder if the headstands are too much pressure on those vertebrae for you. That area sounds very vulnerable right now. The head is heavy but to put the full weight of your body on it may be too much altogether.

Did you have any of this going on before starting the headstands?
 
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I know that the headstands worked for @echobravo
Did you have any of this going on before starting the headstands?
I had no issues when I started no. But I dont know if its related. I have also been pulling quite hard on my head to crack joints for a year now quite often. Maybe that or a combibation of both dislocated something.


The area feels like when you have a swollen joint. I think I shouldnt do headstand for now if ever.

I misunderstood. I thought the headstand had caused his problems :)
 
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Any advice about what to do until doctors help ( i have no idea when )? when How much to push being tilted or orthogonal, mentally and physically? How much push hands to hold phone? How to lay? Should I get a philadelphia collar? Any advice greatly apreciated.
 

echobravo

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definitely be careful with headstand.. i know a person that got cervical injury (disc rupture) from doing them.

my case was different, headstand made the joint snap back into place, the 70kg of body weight and probably the tensioning of neck muscles during headstand, made it happen.

the out of place atlas would aggravate neurology in this area, like the lower brainstem (numerous autonomic dysfunctions) and probably vagus (poor digestion, heartbeat..). Headaches, neck pain, aura migraines, eye pain,.. for decades. And then the muscular-skeletal consequences of decades having a slightly tilted/twisted head position.. back pain/stiffness, scoliosis, lower back prolapse, sciatica pains, hip issues.
 

Judee

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Can CCI/AAI start to happen so fast?
Could it fit my reaction when the highest visible vertebra was touched? And the feeling of something being wrong there, especially when I touch?
I think @JenB said, "I believe I had a mild case of this for a very long time (perhaps since my onset or at latest, 14-18 months later), but never associated my symptoms with my neck or my head position. It was only after the thyroidectomy that the positional nature of the symptoms (that turning my head or laying on it made everything worse) became clear."

Hope this helps. Perhaps you could email these doctors and see if there is a neurosurgeon near you that could help. https://www.mechanicalbasis.org/neurosurgeons.html
 

Jyoti

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I am just now putting together my own history/symptomology related to the atlas, dysautonomia, etc. I have started to work with an Atlas Orthogonal chiropractor (I was nervous but when he opened our initial conversation by saying his goal is to reduce pressure on the brain stem, I decided it was worth pursuing) and have had both extraordinary, unthought-of relief from symptoms and huge crashes. So, for me, the jury is out on this particular path of healing, but it certainly confirms my theory that my brainstem/atlas out of alignment is responsible for a great deal of my situation. This chiropractor has referenced swollen nerves as well as muscles in my neck, and encouraged me to ice my neck and occiput, and I am finding some relief in that. I thought @Skuli might also find temporary relief in decreasing inflammation, at least while he looks for a more comprehensive set of answers.
 

echobravo

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and have had both extraordinary, unthought-of relief from symptoms and huge crashes.
Curious...What kind of improvements did you experience, and how quickly did they happen after the atlas adjustments?

Have you had any neck or head trauma in the past that can explain the misalignment?

"Huge crashes".. did the adjustment aggravate the brainstem in any way? I would get terribly ill sometimes if I tilted my head too far backwards.. immediate vertigo, nausea, cracking headache. Probably the misplaced (rotated clockwise) atlas pushing directly on the lower brainstem.

Hope you will see permanent improvements.
 

Jyoti

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@echobravo -- So excited to hear about your experience and especially the fact that the healing continues! I am not yet holding the improvements for more than about 9-12 hours, but they are pretty thrilling while they last. The first one was extraordinary (I've had four to date) but all of them have been instantaneous and completely clear, kind of like your unplanned re-alignment. Prior to the first adjustment, I could not stand, I was dizzy, nauseous, having trouble focusing my eyes--and my brain, sweating profusely, heart racing, etc. The doctor was trying to explain what he saw in my X-rays--pointing to various spots on a monitor--and I was pretty much in tears from the effort required.

I then had the adjustment, stood up and immediately things had changed beyond my wildest hopes: my head felt like it was floating, my jaw was relaxed (as it never is) colors were brighter, vision sharper than it had been in years, mind completely clear, temperature regulated, heart calm and regular, no fatigue at all. I went home and wondered what to do with an evening where I wasn't just counting the minutes till I could slink off to bed. And when I did finally close my eyes that night, I had the best night's sleep in a really long time. I had the same kind of remarkable shift with terrible GI symptoms as well after a second adjustment.

I've worried that the crashes that seem to follow the improvements/adjustments are brainstem compression, which is scary. It makes sense, though--if relieving the pressure creates wellness, then unwellness could easily be originating in compression. The chiropractor has told me that the muscles in my neck are also adjusting after at least a decade of compensation (yes, some trauma can be traced) and are apt to swell and put pressure on nerves (he stressed nerves, not brainstem, but I am unsure) as they are asked to do a slightly different job. Thus, the icing. Which does seem to help some. But the atlas is not staying exactly in place yet so there is the possibility that the brainstem is being impacted.

I also noticed that when the atlas slips a little and I start feeling worse I can turn my head all the way to the left--and only the left-- and alleviate symptoms to some degree. Which is kind of like the opposite of your experience of inadvertently inducing awful symptoms by tilting your head too far back. If nothing else, both directly at this mechanical situation as being a key for me, for you, for some of us at least.
 

Booble

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@echobravo -- So excited to hear about your experience and especially the fact that the healing continues! I am not yet holding the improvements for more than about 9-12 hours, but they are pretty thrilling while they last. The first one was extraordinary (I've had four to date) but all of them have been instantaneous and completely clear, kind of like your unplanned re-alignment. Prior to the first adjustment, I could not stand, I was dizzy, nauseous, having trouble focusing my eyes--and my brain, sweating profusely, heart racing, etc. The doctor was trying to explain what he saw in my X-rays--pointing to various spots on a monitor--and I was pretty much in tears from the effort required.

I then had the adjustment, stood up and immediately things had changed beyond my wildest hopes: my head felt like it was floating, my jaw was relaxed (as it never is) colors were brighter, vision sharper than it had been in years, mind completely clear, temperature regulated, heart calm and regular, no fatigue at all. I went home and wondered what to do with an evening where I wasn't just counting the minutes till I could slink off to bed. And when I did finally close my eyes that night, I had the best night's sleep in a really long time. I had the same kind of remarkable shift with terrible GI symptoms as well after a second adjustment.

I've worried that the crashes that seem to follow the improvements/adjustments are brainstem compression, which is scary. It makes sense, though--if relieving the pressure creates wellness, then unwellness could easily be originating in compression. The chiropractor has told me that the muscles in my neck are also adjusting after at least a decade of compensation (yes, some trauma can be traced) and are apt to swell and put pressure on nerves (he stressed nerves, not brainstem, but I am unsure) as they are asked to do a slightly different job. Thus, the icing. Which does seem to help some. But the atlas is not staying exactly in place yet so there is the possibility that the brainstem is being impacted.

I also noticed that when the atlas slips a little and I start feeling worse I can turn my head all the way to the left--and only the left-- and alleviate symptoms to some degree. Which is kind of like the opposite of your experience of inadvertently inducing awful symptoms by tilting your head too far back. If nothing else, both directly at this mechanical situation as being a key for me, for you, for some of us at least.

Jyoti -- if you are still around -- do you have an update on this a year later? I feel pretty sure that much of my symptoms are related to this kind of thing but have been to afraid to go to a chiropractor after reading about the (very low) risk of stroke.
 

Wayne

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