Could this be POTS?

Posted , 2 users are following.


I am at my witts end after a 7 year health battle which started with a massive thump in my heart and then my heart racing out of control. I also had severe head pressure and tingling in my hand . I had every test you can think of for my heart including a catheter. all clear but I still kept getting arythmias etc. I spent my life in the ED just not feeling right.

had a tilt test done and was told I have hypotension and be careful standing up etc. I deal with many weird symptons at times including:


head pressure

will bolt awake at night as blood pressure has dropped and my heart will race uncontrollably. I get instant nausea during this and just don't feel right

gastric issues

can't go into shopping centres as it triggers nausea and vertigo

fatigue like I've got nothing left in my body

migraines nearly every day

panic attacks due to many ambulance rides

horrible neck pain mainly on left side

I'm tired of feeling like a hypochondriac but before this I was perfectly well. most doctors tell me it's a panic attack etc. but I'm so unwell most days that I had to quit my job. I dont get the severe fainting episodes etc like pots can. mine is just a feeling of being really unwell and not right comes over me suddenly and I have to sit down and get out of crowds. when I have an 'episode' which is mainly at night, I can feel really bad then for days, sometimes weeks.

any thoughts would be great. I've ruled out nearly everything I can.



0 likes, 3 replies

3 Replies

  • Posted

    I have tried to reply but unfortunately the moderators delete anything that refers to an outside source, even if it is a reputable one.

    Orthostatic hypotension can be a chronic condition and it sounds like you need help from an autonomic specialist.

  • Posted

    THankyou , I appreciate you reaching out and trying to help

  • Edited

    Look for the Dysautonomia International website.

    Click on "Connect" just under the logo.

    Have a look at the "Find a support group" and "Find a doctor" pages.

    I hope you can find a specialist listed there, or a Facebook support group that covers your location for specialist recommendations. It's worth joining Facebook just to access this knowledge if you don't already have an account. You can always delete the account after you have gotten some local suggestions.

    There is also a good online support group called DINET. There are quite a few folk there who have orthostatic hypotension plus other symptoms. It's a very friendly and helpful community.

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