NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. › Reply To: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts.
I appreciate your distinction between POTS and Dysautonomia. I think this is a very crucial step in getting better care. Heck, even getting the word out to docs about what EDS actually is and how it presents as well as all the “extras” that go with it would be super as well.
My son was diagnosed by a Duke cardiologist (he was so very mean until he realized Austin really did have POTS!), using only the poor mans method. Austin was long gone before they finished the test. The doc seemed satisfied, but could only offer salt pills, stockings…and such which helped very little. He has so much more than POTS!!!!! I can’t agree with you more the desperate need EDSers have for docs to have the information.
I had to look up Dysautonomia!
Symptoms listed on Wikipedia….
Excessive thirst (polydipsia)
Lightheadedness, dizziness or vertigo
Feelings of anxiety or panic (not mentally induced)
Rapid heart rate or slow heart rate
Orthostatic hypotension, sometimes resulting in syncope (fainting)
Other symptoms frequently associated with dysautonomia include: Gastroparesis (delayed gastric emptying), headaches, pallor, malaise, facial flushing, salt cravings, mydriasis (abnormal dilation of the pupils), constipation, diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures. Dysautonomia can also present with orthostatic hypertension. A full list of symptoms may be found at the Dysautonomia Information Network.
Just starting here, I can say a big YES for Austin (and me too). I realize this is not likely the best list, but it was the first one I came across….and we have all of the issues.
Last night Austin came into our room about and hour after we all went to bed. He was having great difficulty breathing, he lay on our bed struggling to get each breath but doing a great job to remain as calm as possible so as not to aggravate the issue, he was very pale (he is very pale anyways…) and it was as if his rib cage or diaphragm were contracting…like spasms… I could feel his trunk go super hard on and off. Very weird! He looked like he was about to convulse at any moment with major twitches. I grabbed the heating pad and put it across his upper abdomen and lower ribs…and waited a few moments to see if this made it worse or better. He seemed to slowly, slowly relax until he was able to breathe again. Did the heat help? Or was it coming down already? I don’t know. But I tell you, I was one worried mother!
Thing is, I couldn’t even begin to explain this to our doc and hope for any real help!
So today I am in totally overwhelmed mode, mother hen worried sick I am not helping my son, and days and days and days go by while he suffers! I breaks my heart!
He is a brilliant young man, who lives in his bedroom, and tries so hard every day to do the best he can for himself.
If only we knew what doc to go to, or where to start!
We are attending the Cincinnati EDF conference and hope to learn more. We were going to Frankenmuth to hear you Dr. Diana, but as you know, it was canceled. Hopefully next year we can attend that one.
Thank you Dr. Diana, for all you do!