Neck pain

[geneva]

I could really use some help. Does anyone know of any documentation regarding neck pain with POTS? I have seen it on some symptoms lists but cannot find any specifics to provide my doctor. I don't know if there is anything that can be done to improve or not. I have had the pain since the onset of POTS and have had lots of tests which are all negative.

It usually starts when I have been up too long or using my eyes too much such as sitting on the computer or driving. It begins with pressure at the base of my skull and then pain spreads to both sides of my neck. Over the 3 years I have had improvement -- weekly massage therapy helps but just wondering if anyone has any ideas on the cause or where there is more information. Thanks.

[pamyla]

Not sure I have a solution, but I get the neck pain too. Especially when sitting at the computer (like now!!) I try to do lots of stretching, which helps a bit. I used to go to a chiropractor, and that also helped too.

[MightyMouse]

Hey there.

I've heard Dr. Low describe the neck pain as having a "coat hanger" configuration; that is, pain and discomfort spread down from the base of the head, and then spread across the shoulders. I've experienced this upon near-faints. It's a very heavy and uncomfortable feeling.

That being said, neck pain may be because of neck problems and not related to POTS--I say that as someone who's lived through that first hand, and has had 2 spinal surgeries. I have explained my situation in detail on my personal website (use the link listed in my profiel). DO NOT discount the possibility that your symptoms are a result of something else--do see your doctor and let them know of your neck pain. I can tell you that after many years (decades) of neck pain, it's such a joy to have days without that pain.

Let your doc know that you're not sure it's actually POTS or something else. Sorting all that out, after all, IS your doc's job. And, if you're doc isn't doing that for you, may I suggest you find someone who WILL be a detective on your behalf. Hey, every little bit of relief from your symptoms is worth the effort!

Nina:)

Edited October 2, 2003 by MightyMouse

[geneva]

I know what you mean about keeping in mind that some things may not actually be from POTS. Thankfully my neurologist has taken it seriously but when the MRI's and doppler ultrasound came back negative he didn't know where to go next. As I say it has gotten less severe and thankfully less frequent in the last 3 years but I don't know if that is due to lifestyle changes or actual improvement. I still deal with it several times a week vs daily and it takes a lot out of me because once it starts, it may last a long time.

The "coat hanger" configuration is EXACTLY what it feels like and the heavy feeling is true as well. I have never fainted with POTS but when I begin to get this feeling I try to sit or lie down quickly because it is so uncomfortable and will only get worse if I continue.

Do you know if Dr Low has written about the coat hanger pain?.

[MightyMouse]

not sure if he's written about it, but I did hear him discuss it at the last NDRF conference that was held in July 2002.

BTW, just because your films came back "negative" doesn't mean there isn't a problem. It all hinges on who read your films. Mine were consistently read as normal despite having a shattered disk that had fused naturally across a period of 20+ years--and then started to fill in with bone inside my spinal canal, compressing my cord significantly. Normal cord space is about 16 to 20 milimeters. Mine was down to about 7mm, hence the surgery (my neurosurgeon uses 10mm as the functional threshold).

Nina