New to Forum - some questions

[Stark]

Hi All,

New to the forum, 30 years old. I've been suffering from POTS for about 3 months and was recently diagnosed via TTT. I have a few questions, if you don't mind.

1) Is it worth it to go to Mayo for additional testing? I have an cardiologist who is willing to prescribe different medications to see what works, but I've heard Mayo has a great treatment center

 

2) I've recently been suffering from severe neck pain and a host of neurological symptoms (headaches, tinnitus, dizziness, tingling in hands) is this normal for POTS? My neck muscles are extremely tight and I have limited range of motion in turning my head. Despite several MRIs, an EMG, an xray, and a consult with a neurosurgeon, they can find nothing wrong.

 

3) I have also had episodes of very severe shortness of breath, and the feeling that my body has "forgotten" to breathe. This occurs most frequently when I'm trying to sleep. Does anyone have any solutions for this? Is it dangerous? It was so bad last night that I went to the ER and I got no sleep afterwards due to it continuing all night. It was genuinely terrifying.

 

These symptoms are all very new and scary to me. I would appreciate any comments

[WinterSown]

1 hour ago, Stark said:

Hi All,

New to the forum, 30 years old. I've been suffering from POTS for about 3 months and was recently diagnosed via TTT. I have a few questions, if you don't mind.

1) Is it worth it to go to Mayo for additional testing? I have an cardiologist who is willing to prescribe different medications to see what works, but I've heard Mayo has a great treatment center
 

That's a tough call. They have a long waiting list. Work with your local doctors first. That your doctor wants to try various drugs or managements to help is just what you need, many are very obstinate about doing anything at all for a problem that's too often deemed 'all in our heads'. I have two cardiologists, one is an EP, and they work as a team to care for me--the differences are subtle but one works to reduce the symptoms and the other works to improve my quality of life--they both tweak my drugs. They are slowly honing in on the right combo of management and meds. The EP just added Mestinin a couple of days ago and so far, so good with that. I feel like I am experiencing less sensory overload and have more energy. win win

 

2) I've recently been suffering from severe neck pain and a host of neurological symptoms (headaches, tinnitus, dizziness, tingling in hands) is this normal for POTS? My neck muscles are extremely tight and I have limited range of motion in turning my head. Despite several MRIs, an EMG, an xray, and a consult with a neurosurgeon, they can find nothing wrong.

I had those tests and a neck doppler too. I'm glad they found nothing in your tests which means no physical defects (hooray! you get a win there still!)--I got surprised with radiculopathy and got a PT script which helped with range of motion and lessened some of the pain and parasthesia.  If your neuro is uncooperative, ask your primary for a PT script to help give you some relief. 

 

3) I have also had episodes of very severe shortness of breath, and the feeling that my body has "forgotten" to breathe. This occurs most frequently when I'm trying to sleep. Does anyone have any solutions for this? Is it dangerous? It was so bad last night that I went to the ER and I got no sleep afterwards due to it continuing all night. It was genuinely terrifying.

Sounds a  bit like air hunger. It can be scary as all get out. It is one of my symptoms following a Drop Attack, and I sometimes get this as I am falling asleep. Just like we would yawn but I'm gulping air feeling like I got winded or strangled when I did nothing to bring it on. I've found that getting up and doing some walking around or mild exercise is helpful in restoring my breathing and circulation. It's calming too. I do have less problems with air hunger than when my symptoms did first begin--I am not as worried about it as originally and that I think knocks down some of the anxiety which can fuel other symptoms. Feel better soon! You will, but it takes time to find the right combo of drugs, exercise and management. 

 

These symptoms are all very new and scary to me. I would appreciate any comments.

You're in a safe place here--everyone is very kind and helpful, very understanding.

 

[p8d]

Where are you located? There are a small but geographically diverse number of good treatment centers in the country.  There’s a link on the main page to Drs on the main page of this site and you can ask about specific ones here.  I wouldn’t trade my Milwaukee-area specialists for anywhere so don’t think Mayo is the only one.  Cleveland Clinic, Vanderbilt, Stanford as well as Mayo are all excellent.  

Coat hanger pain is what you are describing and many of us have it.  It’s associated with dysautonomia. If remember correctly the theory is that there isn’t sufficient blood supply to the upper back/neck.  Search the forum and check out the main page for more info.  I take occasional Flexeril and use heat for mine.

Air hunger as @WinterSown has suggested, also affects some of us.  It is scary!  Mine seems to have improved with meds and exercise.  Many of the symptoms are scary but with treatment it gets better.  As my specialists have told me more than once, this is not fatal.  Once you learn more about it and how your body works, or not, you adjust to it.  It still sucks but I think we adapt to the new normal.  The best thing you can do is keep fighting to get better.  Do the increased fluids/compression garments/salt/exercise/learn your limits/save spoons.  They are treatments because they all help at least somewhat and for me at least every little bit adds up.  I am nowhere near ok but I am ok with that now.