Hi Lester,

Your situation is very specific and I'm not suggesting that this is the cause- only that the incidence of "coat hanger pain" is very high with people with OH and POTS. Maybe it exacerbates the original injury or makes it difficult for it to heal?

There is a lot of stuff on the web. This is from Nature:
"Neck pain was reported by 53.6% of subjects. Orthostatic hypotension was present in 57.1% of subjects. Neck pain was reported by 75% of subjects with OH and 25% of subjects without OH (P<0.03, Chi-square). Features of such pain included positive correlation to upright posture and exercise, and relief when lying flat."

Btw, I also see Dr. Jaradeh at Stanford. And whatever the problem is, I think finding a gifted PT can really help. When I was doing IVIG, my PT designed a program that was supine and then mixed supine and upright to slowly get me back on my feet. For what it's worth, I had fairly severe pain/numbness/odd sensory issues in my left arm/chest/neck/and sometimes face and it was not interesting to my doctors because it was so non-standard.

Good luck.

Hi unjour!

Thank you for the response. It's interesting to think about how the OH could be related to the neck problem. I've heard of people having POTS also experiencing the "coat hanger" pain problem, which is interesting because it's in the same area that I experience my pain. However, I will say that my dysautonomia symptoms didn't start until after a year or two of the neck pain (the order of progression was: muscle problem in my pec/neck alone in 2016, but getting worse in the neck in the start of 2017, IBS starting later in 2017, calf muscles start to feel tender and knotted up starting in 2018, then mild dysautonomia in 2019, worsening just a bit in 2020 and being diagnosed with POTS/OH).

My personal theory is that the nerves and muscles in the neck are unhappy from all the compression, and from what I've read it's not uncommon for people with TOS to have dysautonomia. Thankfully I don't have any of the other syomptoms associated with autonomic neuropathy, like dysfunctional sweat responses (I had the table tilt test at Stanford and they also measured my sweating, which is normal).

Dr. Jaradeh did prescribe florinef for the POTS, although I haven't had the need to take it because I don't feel really bad enough or been at risk of fainting. However, things have been getting slightly worse since then. My reasoning before was that there seems to be a clear issue going on with my neck that I'd need to try and address much better than I had before before doing just medication.

Btw, a lot of bloodwork was done to rule out inflammatory causes of autonomic neuropahy, which all came back normal, although my CoQ10 was low (or rather, the percent of oxidized vs. un-oxidized CoQ10 was higher than it should be), so I am supplementing with ubiquinol (didn't affect any symptoms, but in labwork it raised the un-oxidized CoQ10 to be well past what it should be in the blood).

Anyway, I'm rambling a bit, but I definitely agree that finding a good PT is going to be important here. I was thinking about looking at UCSF in the future, since at the moment my insurance doesn't cover Stanford (but that should change and I'm going back to Dr. Jaradeh this Fall). My biggest concern right now is trying to find a medical group or clinic that has people doing both PT and something like Botox for the neck, if that is indeed going to help with any potential TOS. I bought the Peter Edgelow kit myself and have the top rib mobilization stick, but am somewhat at a loss even with the DVD instruction kit on how to make progress here (the three PTs I've had so far at different times aren't really aware of TOS or the Edgelow protocol). I do have a copy of Clair Davies' Trigger Point Therapy Workbook, so maybe I need to just work at this gradually myself while I look for a PT that can help me with some manual release as well.

I have POTS and had bilateral arterial thoracic outlet syndrome. Having surgery two years ago to relive the thoracic outlet syndrom definitely helped my POTS symptoms significantly (I'm not bedridden anymore and am not dizzy when I turn my head) but has not resolved them. My stomach issues improved greatly as well, along with brain fog. I recommend Dr. David Whitley, a vascular surgeon in Birmingham, AL. He used ultrasound and other means to diagnose me and was able to tell that my subclavian arteries were 100% compressed depending on the position of my arms. While he did not suspect a link between POTS and TOS, I found that relieving the TOS helped my POTS symptoms. It definitely helped me regain some quality of life. My mother had the same surgery for her arterial TOS (she only had it on one side). Dr. Whitley had recommended PT to us first, but it did not help us due to it being the rare arterial form of TOS.

I pray you find relief!

I regularly see a orthospinologist chiropractor who helps me with residual symptoms of TOS, as I have frequent joint subluxations which can cause a recurrence of symptoms on a much smaller, less-debilitating scale. I highly recommend this orthospinology technique, which is safe for TOS. If you have TOS, you should never let a chiropractor manually adjust your neck.

Thank you, Rachel! I am sorry to hear what you've been through, and am glad to hear that the surgery provided some improvement.

It is quite interesting to hear that you experienced POTS and TOS together. I myself am somewhat skeptical of the link, but there doesn't seem to be any other explanation of it.

I have in fact scheduled a consultation with Dr. Donahue at Mass General, and will be getting Botox and a CT scan this December. So presumably if there is indeed arterial compression it will show up on the scan.

In my case, the symptoms do not seem to vary based on my arm position. The progression has been gradual and steady, starting with muscle pain in my calves, and now POTS, OH, and finally brain fog, over time these past 5 years. If it's as simple as arterial compression, I would be quite happy to get relief from surgery, of course.

On the other hand, I have to wonder if this is somehow a neuropathy triggered by the TOS. I have been referred to a general neurologist at UCSF, and plan to ask them about what kind of imaging or other diagnostics we could do to look for a neuropathic explanation. The fact that I have OH and also general muscle and calf pain makes me wonder if a skin punch biopsy to look for small fiber neuropathy is in order.

Hi -

How are you feeling?

We’re you successful in finding a doctor for your symptoms.

I’ve had TOS & Pec Minor for 5 years now.

I do receive Botox injections for my right side scalenes, and pec minor. Also trigger point injection for pec minor.

The injection help about 50-60 % relief. I couldn’t imagine not having them.

Very temporary relief. Botox every 10 weeks and trigger point injection every 6 weeks.

My pain management specialist is at UCSD. I’m also working with a vascular surgeon at UCSD.

The vascular surgeon is saying to have a pec minor tenotomy. My other option is decompression surgery.

It’s been such a long path I’m not sure what to do.

There’s no guarantee any of this will work.

Best Wishes,

Cindy

Lester, you calf pain is likely from your POTS re: pooling of blood in the legs - consider compression stocking or water therapy / recumbent bike. Brain fog is also very common in POTS as well as IBS / Mast Cell disorders. There are known links now that many POTS patients also have hEDS or ehlers danlos syndrome - hypermobility.

EDS is a connective tissue disorder that usually presents as joint hypermobility and ligament laxity leading to micro tears and scar tissue formation. I personally have a long history of arm, hand and neck issues and whiplash. Numerous nerve compression issues from scar tissue.
I have been struggling myself with NTOS for about 5 years and been thru the gamut of all modalities and injections. My right arm and chest/neck are becoming disabled and weak. Can't even cut vegetables or prepare food.

Looking down triggers neck numbness. Raise my arms at all and it worsens. Dry needling, massage and cranial sacral therapy helpful but short term relief. Recently diagnosed with VTOS with subclavian vein compressed on abduction picked up with MR Neurography. To make matters worse, I fell about 12 years ago and had rotator cuff surgery on this side. Im making my rounds thru vascular TOS guys. They are afraid to touch me because of the ligament laxity. One surgeon is blaming the TOS on poor posture which no matter how much PT I do, the ligament laxity doesnt change.
Vagus nerve runs thru the neck and some are saying compressions in neck or vascular system cause POTS. Im not so sure about that although Im not dismissing it. My daughter has severe POTS, hEDS and IBS and all the symptoms you have. She had QSART test that diagnosed the small fiber neuropathy. This is common in POTS too. Not sure a skin biopsy would be of any value. Can't do anything for it anyway.