Percythetrain Posted May 11, 2016 Report Share Posted May 11, 2016 Hi all, I'm still not diagnosed but the more I find out about POTS the more I'm taken aback by how much it matches my symptoms. I basically have the following: -- random tachycardia and air hunger -- random dizziness and low blood pressure -- Will go blind (temporarily) and my heart will go insane when I stand up or just moving about. -- Sometimes even "looking up" or moving my neck about will cause palpitations and hypotension -- TALKING exhausts me. I can seldom hold a normal conversation. (feels like trying to talk while running at full speed) -- My heart will often go insane from the effort of TALKING (crazy, eh?) -- Not just my heart but my NECK will throb like it's getting ready to explode. This is also worse moving about. -- I cannot bend my head down (as if picking something up) because my neck will nearly burst from all the throbbing. -- I cannot sleep horizontal because ... my neck. -- I always have some degree of head pressure and ear pressure (unsure if POTS or something else) I was just reading an article on here about POTS symptoms that mention the neck and circulation related issues that can affect it. I was wondering if anybody else has this neck problem or I should look elsewhere for the cause of this neck throbbing. Do you guys think my symptoms might point to POTS? I used to have some issues with lightheadedness as a teenager, as well as issues when it came to singing and reading aloud. But back then I could hold decent conversations. Thanks for any advice or suggestions Quote Link to comment Share on other sites More sharing options...
m@t Posted May 12, 2016 Report Share Posted May 12, 2016 If you look at a video of "JVP" (jugular venous pressure) does that look like the pulsations you feel in your neck? Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 13, 2016 Report Share Posted May 13, 2016 If I do a particularly strenuous activity (for me), and I get short of breathe, flushed, sweaty, and tachy, I will often have a very hard, pronounced pulse in my neck. Quote Link to comment Share on other sites More sharing options...
yogini Posted May 13, 2016 Report Share Posted May 13, 2016 Have you seen a doctor about the neck issues? Many of the issues you mention are very common with POTS - breathlessness, not being abler to talk, skyrocketing HR. Neck pain is also common, but the neck/head issues sounds like they need special attention. There are some common co-onditons that people with POTS have which can affect the neck. Chiari and EDS are a couple of them. i don't know a ton about these conditions but others may know more. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 13, 2016 Report Share Posted May 13, 2016 Hi Percy! Yes, I would agree with Yogini re: seeing a dr. about the neck issues, on another note, have they ever done a Doppler/ultrasound of the carotid arteries to look at blood flow? So sorry that you have all of this going on, it must be really scary when the blindness occurs. What is your BP like when this happens? Quote Link to comment Share on other sites More sharing options...
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