Blood Clot?

[Hhkk]

I have recently really been querying my dysautonomia diagnosis, personally feel as though I may have been misdiagnosed with just “orthostatic intolerance”. People with orthostatc hypotension that I have spoken to say they do not have any of the symptoms I experience. Moreover, I am not improving with exercise, it gives me chest throbbing.

I feel very short of breath, sitting or standing, severely heavy/tight chest at rest, when I lie down to sleep it feels like a rock is ontop, and when I sit up, it’s alleviated. I have severe stabbing chest pains throughout the day, tests normal for heart. A dry cough too and lightheadedness. With exercise I feel i can’t breathe well or take a full, comfortable breath in. All asthma inhalers haven’t done anything and my sats are always 99%.. It is just a feeling of difficulty breathing. No way is it any form of anxiety, I feel unwell permanently and know that is an entirely different, less worse feeling!

I am 20, normal weight, no prior health issues, all of this supposed “dysautonomia llness” began after taking two contraceptive pills 11 months ago. My symptoms have got much worse recently, can’t lie flat in bed at all and chest pain worse all over. I have never been given a CT scan. I know in my gut something more is wrong that could maybe be an easy fix. The doctors are really fobbing me off. I can’t even leave the house to go to my classes I feel so unwell and weak. I really don’t know if its dysautonomia, I never experienced a specific “flu” or “virus”, just the birth control pills (which gave me awful symptoms at the time so stopped them).

Any comments welcome x

[kushami36]

Chronic orthostatic intolerance can cause dyspnea (air hunger) and chest pain in some cases. It’s important to remember that chronic OI is different to OH, and it has a lot of variability in symptoms.

Having said that, if you are unhappy with your diagnosis and feel it doesn’t explain your symptoms, do you have the possibility of a second opinion?

Was the diagnosis made by an autonomic specialist? Did you have testing? Have they recommended any treatment apart from exercise?

I have been diagnosed with chronic OI. Basically it encompasses the same symptoms as POTS except the characteristic tachycardia. (Because it’s a syndrome, patients will have a constellation of symptoms, not every single one.)

potsuk.org/about-pots/sympt...

Here’s an article that might help as well:

brighamhealthonamission.org...

OI-type dysautonomia doesn’t necessarily come from a specific trigger such as a viral infection. It can have a gradual onset, or come seemingly “out of nowhere” as well. With so little research done on this syndrome, it is possible it could come from a medication reaction (nobody has ruled that out).

It is rather difficult to find info on chronic OI. Dr Peter Novak seems to be the foremost researcher in the field, so if you feel up to it you can find various articles and studies he has done in the last decade.