skyblu Posted July 28, 2009 Report Share Posted July 28, 2009 Does anyone else experience "coat hanger pain"... it's the reallly bad pain that goes up your shoulder, the back of your neck and head. I've seen some websites which say it can be related to dysautonomia and OI. I assumed there might be some other causes like disk herniation or muscle spasms.Anyhow....I went to a neurologist last week who claimed she doesn't deal with neck pain, the brain, dysautonomia etc...... Don't ask what she does deal with ....cause it sure ain't much. She proved herself to be totally useless. So, I still have no clue as to what's causing my pain which I now have all the time and I can't seem to find any relief from it. Including using heat wraps.Has anyone found anything that helps with this kind of pain?Thanks Quote Link to comment Share on other sites More sharing options...
flop Posted July 28, 2009 Report Share Posted July 28, 2009 Drinking water and lying down helps.The thought is that coat-hanger pain in OI is caused by abnormal blood distribution. If the brain is lacking blood it will attempt to get more blood by "stealing" blood from other areas nearby that are "less important". Things like the muscles of the neck and shoulders are the typical places that have their blood supply stolen - this leads to muscle pain, fatigue and stiffness. The usual helps to improve OI should help coathanger pain. The short term fix for me is simply to lie down.Flop Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 28, 2009 Report Share Posted July 28, 2009 Yep, I've had a couple MRI's of my neck and multiple chiropractic, PT, and neurology appointments. All the neurologists in my area say there's no one who treats autonomic disorders. One neurologist had the audacity to bill my insurance for nearly $2,000 for literally a 20 minute visit! The insurance paid! I called to complain to the insurance company about the billing of that visit, especially since she told me at the end of the 20 minutes that I had no neurological problems. I've had unexplained neck, head, and upper back pain for over 10 years now, although I've officially only had POTS for 3 years. Like Flop said, the coathanger pain is relieved by the same measures that relieve other OI symptoms (hydration, salt, lying down, etc). Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted July 28, 2009 Report Share Posted July 28, 2009 Thank you Flop!! Never had really understood it before but I sure suffer from it!! For me it is like from my chest up to the base of my head including my throat..like a line from my heart straight up to my head...laying down and lots of fluids are my only real remady. Someimtes it feels like I can't hold my head up one more minute.You are not alone...Erika Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted July 28, 2009 Report Share Posted July 28, 2009 I get Coat-Hanger Pain often. It's one of the first clues that I've been up too long. Lying down with my feet up helps as does getting to a horizontal position as soon as feasible. I haven't found a neurologist who treats it - nor have I really found a neuro who treats POTS. I'm being treated by an endo who isn't afraid to google.Sara Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 28, 2009 Report Share Posted July 28, 2009 Hi,You might want to read through this recent post....http://dinet.ipbhost.com/index.php?showtop...mp;hl=neck+pain~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
skyblu Posted July 28, 2009 Author Report Share Posted July 28, 2009 Thanks for your replies. And thank you Flop for the explanation. It helps to undertand why this pain keeps happening. I lay down for a while and noticed the pain went away. LOL...I loved your reply Sara...."a doctor who isn't afraid to google" How rare is that? Quote Link to comment Share on other sites More sharing options...
skyblu Posted July 28, 2009 Author Report Share Posted July 28, 2009 Hi,You might want to read through this recent post....http://dinet.ipbhost.com/index.php?showtop...mp;hl=neck+pain~ Broken_Shell Thanks for the link. Quote Link to comment Share on other sites More sharing options...
TopHatKat Posted July 29, 2009 Report Share Posted July 29, 2009 I have been having this pain for a long time now too and no one has been able to explain it to me, so thanks to all of you! I think I have learned more about my symptoms and how to treat them here than from any doctor I have seen!!! And none of you will bill my insurance. Haha. Quote Link to comment Share on other sites More sharing options...
HoudiniCat Posted July 29, 2009 Report Share Posted July 29, 2009 In addition to salt/water loading and lying down, I'll wrap my neck and shoulders with a buckwheat hull pillow (especially good when it's warmed up in cold weather) or use a little battery operated massager to provide some relief. Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 29, 2009 Report Share Posted July 29, 2009 I get this too and for me it tends to come on as an acute attack of pain. Lasts 20 Minutes to several hours depending on how bad I am flaring.Hot packs or cold packs help a bit. In addition ... lying down with the top of my head just a tiny bit off of the edge of the bed and my arms back over the edge of the bed dangling a bit. For whatever reason it seems to open up that area and better balances my blood flow. Quote Link to comment Share on other sites More sharing options...
Pat Posted August 31, 2009 Report Share Posted August 31, 2009 I wonder if what I have is Coat hanger pain, mine doesnt go up into my neck it goes around my chest like where your bra would go. It comes and goes I cannot find any triggers, but when it is hurting it almost brings me to tears. Do you experience anything like this?PatDoes anyone else experience "coat hanger pain"... it's the reallly bad pain that goes up your shoulder, the back of your neck and head. I've seen some websites which say it can be related to dysautonomia and OI. I assumed there might be some other causes like disk herniation or muscle spasms.Anyhow....I went to a neurologist last week who claimed she doesn't deal with neck pain, the brain, dysautonomia etc...... Don't ask what she does deal with ....cause it sure ain't much. She proved herself to be totally useless. So, I still have no clue as to what's causing my pain which I now have all the time and I can't seem to find any relief from it. Including using heat wraps.Has anyone found anything that helps with this kind of pain?Thanks Quote Link to comment Share on other sites More sharing options...
helen.t Posted August 31, 2009 Report Share Posted August 31, 2009 Yes I get this too and have had it for a long time especially with sitting up in the one place. I agree with Flops advice about lying down but if you are in a situation which makes this difficult I try to move around a bit. Stretch my arms out front of me then slowly above, move my shoulders gently up and down and around very slow, I then massage the painful area with opposite hand to try to release tension and encourage blood flow and try to do all that together. I also flex my feet up and down so that the calves of my legs are helping to pump the blood round my body and up to my head better. I try to do it as inconspicuous as I can but it does make me look very figity I suppose. but it makes it more bearable to cope so I don't really bother about what others think. I usually do the moving thing before it gets too agonising as it works better although you have to keep doing it now and again. Even just being able to get up and walk around helps a little but I usually still have to give a good massage. Hope this is of help to you. Helen Quote Link to comment Share on other sites More sharing options...
potsgirl Posted August 31, 2009 Report Share Posted August 31, 2009 Pat, Does it feel like you might be having angina? Quote Link to comment Share on other sites More sharing options...
helen.t Posted August 31, 2009 Report Share Posted August 31, 2009 Pat, I dont think thats coathanger pain that you have. Coathanger pain affects you across your shoulders ,up your neck and into your head. I have had that pain too that your describing and it was made worse one time when I was given Fluoxetine. I ended up in hospital very ill indeed and they all thought I was having a heart attack/stroke as my heart rate and BP was completly going crazy but they continued to give me the drug that was making me ill as they didn't have clue what was wrong with me and added others as well! They then thought it was a virus affecting my heart muscles which was causing inflamation to the arteries. I do believe it was inflamation affecting the blood vessels and I still get it from time to time but pain killers and anti inflamatory have helped me greatly, although I take these for different reasons. I still get spasms now and again but I am way better now than I was. Not sure why this is, Maybe to do with different meds I'm on. It may be worth your while mentioning it to your Doctor just in case you need it checked out. Hope you get on ok, Helen Quote Link to comment Share on other sites More sharing options...
juliegee Posted August 31, 2009 Report Share Posted August 31, 2009 skyblu,I get that too, off & on. I've noticed that it's particularly bad when I'm experiencing a lot of hypoglycemia. I've seen this described by others with severe hypoglycemia. Sounds weird, but it may be worth small frequent high protein/complex carb meals. Have you dealt with this before? All the best-Julie Quote Link to comment Share on other sites More sharing options...
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