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How Many Of Us Have Neck Issues?


sue1234
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I have had a "cracking" neck for a few years now. I have had POTS for almost 4 years, but don't exactly recall how long my neck has been cracking. It cracks mostly at night in bed when I roll over. Initially I remember having really LOUD popping-cracking noises when it first started that actually made me be real still to make sure I could still feel my fingers and toes! I have to say I once had a whiplash from a carnival ride(can you believe?), riding the Scrambler with my kids and he turned it on full speed and went extra time! Also, have been rear-ended in a car but no obvious injury at the time(we were stopped for turning off of a highway and got hit with the guy going 55 MPH-very lucky).

As I've said before, I think out every possible avenue. A while back I asked people about posture, and I guess this falls along the same line. As they are possibly finding in MS symptoms that their jugular veins are "kinked" and it could be related to head/neck/body posture, I was wondering if there could be a similar experience going on in POTS also. Just some talk here would be appreciated.

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Neck and shoulder muscle pain is a real issue for quite a few people with POTS, it can also go along with a headache. It is sometimes called "coat hanger pain".

When the brain is complaining because of insufficient blood flow (as is often the case in POTS) the brain pinches / steals blood flow from other less important places. The neck and shoulder muscles are often targets to have their blood supply diverted to the brain because they are nearby and much less important. The reduced blood suppply causes the muscles to tighten up and leads to pain. Tightening of the neck muscles can pull on the scalp (just like a tension headache) and the scalp itself can have reduced blood supply - this would cause a headache.

In my experience I very easily get "knots" in my neck and shoulder muscles. If I rub deeply on the muscles I can actually feel hard lumps in the muscles. When I turn my head I often get clicking / creaking / snapping sounds that can be quite alarming. I find that when my POTS is bad that my neck pain tends to appear / get worse.

For me the best treatment / prevention is to have a regular massage. I used to have a weekly sports massage therapy session and during that time I was free of neck and shoulder problems. I haven't been able to see my sports therapist for a couple of months and I can really tell the difference now. I hope to get enough money together to have a massage soon (even better would be to find a boyfriend who could massage my neck!).

The other thing that helps is applying heat. I have a microwave wheat-bag neck wrap that provides good relief. However be sure to lie down before trying out heat incase it drops your BP and makes you dizzy or even faint!

Flop

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I hadn't noticed the coat hanger pain until some way into my POTS Dx. For the last year or so, I notice (and my husband has noticed and asked what I am doing even when I don't realize) that I stretch my neck by pulling my head forward/down....because of pain in the back of my neck - up into the back of my head and somewhat in shoulders. Well, I guess I wouldn't really call it pain - more like soreness/achiness/tightness. Feel that I need to stretch it out all the time - and this is more so (I think) at times that I am somewhat relapsey (sorry to make up words).

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I've recently learned that I have a number of upper cervical/brainstem issues that could either cause or exacerbate ans stuff. I have a small chiari (herniation of cerebellum into neck), instability of head on neck, and pannus overgrowth on odontoid (second vertebra?) that pinches brainstem, esp when I look down. All of these issues are eds related, but years of bad, head-forward posture have exacerbated. My head/neck pains and ans symptoms are improved with a neck brace and exercises so that I can keep my head up and back. My geneticist actually thinks that part of the reason so many edsers have dysautonomia is because of mechanical compression of brainstem through some combo of chiari, instability, etc. That would explain why I only developed symptoms several years ago-- it took that long for the pannus and instability to build up. I"m not saying this is the cause of all ans issues, but I"ve found it very helpful to learn about in my case. I'm trying to avoid surgery, and maintain meticulous posture.

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Mack & I have had severe neck issues in the past. His head subluxed one time during a walk- he looked at the moon. He was unable to stand, was in severe pain, vomiting, etc. It was so frightening. My neck has been injured in two car accidents. Oddly, when my hypoglycemia is bad, the coat hanger pain that Flop describes is severe still.

Odd that so many of us have this.

Julie

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Read my signature line----------------my neck---cervical/cranial instability is so bad that I'm pulling teep tendons in my neck now.

My EDS doc is trying to get more knowledge out there on this, as instabilty related to EDS is much more difficult to recognize then the traditional causes such as rheumatoid arthritis, or an injury to the area. The instability caused by EDS is from unstable loose joints and ligaments, and they DO play an important role in holding that area together---------BUT apparently Doctors can get this knocked into their heads.

I have a very bad neck............ :blink:

Maxine :0)

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Read my signature line----------------my neck---cervical/cranial instability is so bad that I'm pulling teep tendons in my neck now.

My EDS doc is trying to get more knowledge out there on this, as instabilty related to EDS is much more difficult to recognize then the traditional causes such as rheumatoid arthritis, or an injury to the area. The instability caused by EDS is from unstable loose joints and ligaments, and they DO play an important role in holding that area together---------BUT apparently Doctors can get this knocked into their heads.

I have a very bad neck............ :blink:

Maxine :0)

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I've had whiplash twice. My skull also does not sit straight on my spine; the top vertebrae is 20mm higher on one side than the other. I went to a special chiropractor for specific adjustments, but it would not stay in line and had no bearing on my headaches. My neck crackles and pops all the time. I also have a slight bone spur and a disk bulge just below the second vertebrae.

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Guest tearose

Yes to neck issues. In my more "spry" days I did hang gliding. I stalled the kite once and came down and my head went into the down wires...anyway, yes to neck issues.

I now have been told I have some slight buldge in the cervical area but I live with most of the pain because I got use to it and use to managing all this funkyness...

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Yes, my neck pain started over 12 years ago when I was in a car accident. I also notice that often I'm too tired to sit up straight which exacerbates my neck/upper back pain. Like Flop, I've found that heat packs help. I do believe much of my upper back pain is POTS-related because I have worse coat-hanger pain when my POTS symptoms are worse, overall.

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When the brain is complaining because of insufficient blood flow (as is often the case in POTS) the brain pinches / steals blood flow from other less important places. The neck and shoulder muscles are often targets to have their blood supply diverted to the brain because they are nearby and much less important. The reduced blood suppply causes the muscles to tighten up and leads to pain. Tightening of the neck muscles can pull on the scalp (just like a tension headache) and the scalp itself can have reduced blood supply - this would cause a headache.
Wow... great explanation. This could explain a proclivity for muscle tension headaches.
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I have neck and shoulder pain. My mom has it too, though she doesn't have dysautonomia. I am hyperflexible in my neck and shoulders, but don't have EDS. In cases of EDS, there is a clearer connection. But for the rest of us, it's hard to tell whether there is a connection. Neck and back pain are reallly common - many people I know have some form of them.

Edited by yogini
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In addition to the muscular aches that go with POTS & NCS, I have spine problems too... had a fusion at c5/6, long story, search if you want to read it. Just had yet another round of EMGs today...oy do those hurt like a bugger! He still has to review my results more formally, but feels now I have involvement of the spinal nerves at c7.

Nina

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Wow, lots of stories since I posted this!

I guess I was just wondering if our cervical vertebrae might be unstable--of course for the EDS people, but maybe also for us non-EDS people. Like I mentioned, my neck has never in my life given me issues, but now creaks and NOT flexible in certain positions, such as looking up. I feel like maybe some of you that say you actually have an unstable cranium.

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