Coat-hanger discomfort but no pain?

[albertspa]

Hey guys,

Does anyone else have this incredibly uncomfortable feeling, as if your shoulders and neck are pulling upwards, sorta "sticking" to your head?

Coat-hanger pain is a characteristic symptom of POTS, but I haven't really found anything without the variable of pain itself and just this really "yucky" and tense feeling.

My doctor (neurologist) said it's likely my muscles not being supplied with blood when I'm in an upright position, creating tension in the area that's meant to support my head. I would love to hear from someone who has similar experiences!

 

[MikeO]

Yes i have sorted through the coat-hanger syndrome. it is a symptom of nOH as well. was not sure if i was feeling just stress tension or what but it cleared up once i was put on Ranolazine.

"nOH also causes other symptoms (e.g., shoulder heaviness [“coat-hanger syndrome”], orthostatic angina, and dyspnea)."

https://www.sciencedirect.com/science/article/pii/S0002914920301028#:~:text=Clinical Signs and Diagnosis of nOH&text=In addition to symptoms of,orthostatic angina%2C and dyspnea).

[Jyoti]

Me too.  I often feel more pressure and tension than actual pain, though the line is sometimes a bit fuzzy.  I do find that it mostly subsides when lying down.  For me it goes with a really tight jaw as well.   Does yours go away when supine, @albertspa?

[MattyT]

Hi Albert, Yes, me too. I have hyperadrenergic POTS and I believe this, at least in my case, is caused by excess catecholamines. In my case that is markedly elevated nor-epinephrine and confirmed by laboratory testing. It is interesting that you call it coat-hanger pain - that's a great description for it which is new to me. I've also had some serious jaw pain and recently had to start orthodontic braces for the second time. I think this is all related. 

I never really noticed how tense my neck and shoulder muscles were until I started getting massages. There were frequent comments that my neck and shoulder muscles were seriously tight. This probably contributed to headaches too. It appears that I had grown accustomed to the neck/shoulder tension and just pushed through it. You deserve credit for recognizing it! I find that it is uber-difficult to be objective about self-observations and often much easier to see these things in other people. 

I have found drugs which help: 1) carvedilol, an alpha & beta blocker; 2) clonidine, an alpha blocker helps quite a lot. These meds were prescribed by a neuroendocrinologist who I trust and they have helped me. They also help with some of the tachycardia and palpitations. 

Feel free to reach out if any questions, 

MattyT