Pat

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?

Pat

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

Hi Guys-

I agree with Melissa. iIdon't think you two are describing the same thing. Unfortunately, I've had both. Pat, that's exactly the pain I had before I got my gallbladder out. It got really intense (multiple hospital stays) before the surgery. Run, don't walk, to your doc for a HIDA scan. That shows whether or not your gallbladder is functioning. They always order ultrasounds first that showed nothing for me. I had NO stones, etc. but my gallbladder was in awful shape when it came out- wrapped in layers and layers of adhesions. The pain radiated to between my shoulder pains- ouch! If it's worse after eating, that's a classic clue.

Erika, Melissa's done a great job of describing the coat hanger pain- also awful. I've had flares of that one off and on for years. It gets particularly bad for me when my blood sugar/hypoglycemia acts up. Sounds crazy, but I have periods where I get awful low blood sugar, and whenever that happens that awful pain in my upper shoulders and neck reoccurs- so debilitating. It's kind of like my glucose reserves have runout and I don't even have the strength to hold my head up Lying down does resolve it and my autonomic stuff gets bad during those periods too. Drink lots of fluid, take lots of salt (if your BP allows) and eat frequent high protein, complex carb snacks.

Hugs-

Julie

Thanks, Julie for your input I had my gall bladder removed in 92 so I know it is not that. You know it would be great if there was a POTS handbook with all the symptoms in it that you could look up and get answers out of, but unfortunately this crazy disease/disorder is different for each person. You all have given me good new information that I can research on. At least I have a starting place. Thanks so much.

Yes!!!

Terrible pain in my back .... thought it was my lungs for a long time. Pain in my chest too and up my throat. Severe when I have done too much. Today I just woke up with it tho...go figure. I have POTS too. I don't have the BP thing tho. I think this pain is called "coat hanger" pain. I am new to this but I am sure someone with more knowledge will have a more scientific explaination.

Glad I am not alone.

Erika

I am going to research into this "coat hanger" pain, I have never heard of it before thanks!

Hi,

I have progressive lenses and they don't bother me, but I had them before I was diagnosed with POTS. Maybe you just need to get use to them sorry, I wasn't much help. Good luck

I have POTS and I get this pain that is upper back/chest basically where your bra would go. Does any one else get this? It doesn't hurt all the time but I do get it several times a day and it is a severe pain. Heat seems to soothe it some. I appreciate any and all comments. Thanks

Does anyone else get pain? I mean I have had a deep pain located kind of like where your bra would go. It isn't constant but when it hurts it is severe and hurts to lay or lean back to sit. I would appreciate any comments. Thanks Pat

I went to Mayo myself this past November the week before Thanksgiving, Mayo is a well oiled machine. They know there stuff. I was diagnosed with POTS and I went there for a confirmation of my diagnosis. I will be honest it will not be a fun time, make sure someone goes with you. You will need an extra pair of eyes and ears, plus to help you. Some of the tests really take it out of you. But believe me it is worth it, they will put you through your paces but you will know by the time you leave what is wrong with you. And believe me it is easier to live with feeling crappy when you know what is wrong. I hope this helps you, but I definitely encourage you to go. God Bless you, Pat

My TTT didnt even last 1 Minute. I was on Beta Blockers. My HR doubled up in a few seconds and i felt very bad and asked them to stop. The doctors stoped the test and said to me that this is all they needed to see! I have no idea what would have happened to me if they would have continued the TTT. Before the tilted me up they told me that if i would feel realy bad, they would stop the test straight away.

I hated the TTT, it is a weird feeling being immobilized. I didn't make it to 15 minutes before I passed out and the next thing I know I am laying flat and they had cool wet cloths on my face trying to get me to wake up.

You are being closely observed and monitored, don't be afraid they will not let anything happen to you.

Hello everyone,

I am glad to have a place to talk to and read with people who understand what I am talking about. I have been recently diagnosed with POTS and Vasavagal neurocardiogenic Syncope and I know people mean well, but no one gets it! They really just don't understand what you are going through. And if you aren't passing out or weaving around... they tell you "but you look okay" I have got to the point now when people ask me how I feel, I tell them crappy and how about you. My husband and boys mean well, but they have turned into Gatorade Nazi's. Mom are you drinking, mom why are you not drinking, mom let me get you a drink. Honey are you okay? How are you feeling? Do you need to sit down, lay down... sometimes I feel like running off and screaming. But I would not get very far and I would ruin my exit by passing out.

Lets have a POTS (with NO pity) Party! What would you bring if all the party participants were dysautonomiacs? I'll bring the hundred-gallon fountain of gatorade, salty pretzels and tiny bran muffins (no tofu manicotti, that's the other thread!)

Next?

P.S. I'll also bring the air tank, cause I don't think any of us could blow up balloons!

Jennifer

This is a great idea! I will bring an air conditoner and a heater, it is a very fine line for comfort. My boys will bring the humor, they think it is really funny to tell people their mom has went to POT!

I am soo upset and figured that the best way to express myself would be to share this with someone who can relate to me! I was walking into work at Walmart Pharmacy and was not feeling well today, so I decided to use my handicap tag and park a bit closer today. Well, this women comes over to me and says "This is a handicap parking space." I reply saying that "This is a handicap tag." The tag was not blue, but red because it is temporary and my doctor re-evaluates me every 6 months. The women still did not believe me and went to the customer service desk and then went to find a manager. I supposedly "did not look like I needed a handicap tag." I WAS SO UPSET! WHAT NERVE DOES THIS WOMEN HAVE TO JUDGE ME AND WHY WOULD I NEED TO OFFER HER AN EXPLANATION. The handicap tag is issued in my name and it is valid... SOME PEOPLE NEED TO MIND THEIR OWN BUSINESS!!! I felt angry and then upset. The only people I knew who would understand me would be others who deal with POTS etc on a regular basis... Any words of advice? or support

It is hard when you have a condition that doesn't really show. People always think I am better because I look ok that day. Just remember they ususally mean well.