- This topic has 1 reply, 1 voice, and was last updated 6 years, 3 months ago by .
- You must be logged in to reply to this topic.
Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.
NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › pots/cause
I don’t know who else to see or what to be tested for. Main symptoms off balance (drunk like feeling). Fatigue shortness of breath and of coarse tachycardia.
My son who has been diagnosed had CT scan and X-rays at an ER, along with blood work. They were looking for pulmonary embolism or aneurysm that could be life threatening. All tests were normal. They said it was vertigo, which we knew was wrong. His vision starts to go when he feels the onset of a syncope episode from POTS and he describes it more like a floor moving in waves rather than a spinning sensation. He had a video EEG/ECG that was relatively normal, but did show signs of tachycardia during episodes. At the onset of an episode, he feels tingling/numbness in his legs, nausea, difficulty breathing, extreme pain in his head (from blood vessel constriction trying to maintain BP), vision disturbances, more severe brain fog. His only fix is to lie down with feet elevated to restore blood flow and BP to his head.
When not having an episode, he has pain in his neck, lower back pain, constant headache (for 2 months now) across the front of his forehead and back to about the rear of his temples, weakness in muscles, difficulty feeling like he can take very big breaths, brain fog, constant fatigue even after sleep, insomnia. His first episode was in flight coming home from a vacation and he passed out completely. Now he has the exact same symptoms every few hours but only when awake. It can even happen when already lying down.
I don’t know if your symptoms mimic typical POTS symptoms, but I’d recommend a thorough examination by a GP or neurologist. Cardiologists can also test for POTS and treat the condition. There’s a lot of information about POTS online, but there are also conditions with similar symptoms that require significantly different treatment methods. You need to be sure what’s wrong before treating.
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
Twitter: @prettyill
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross