Are Dysautonomia And Pulmonary Embolisms Related?

[sspenc]

I was diagnosed with dysautonomia OI one year ago, my sister was just hospitalized with pulmonary embolisms. Just wondering if there is any connection considering dysautonomia seems to have an underlying genetic factor??...

[corina]

I can't really answer your question (hope some else can!), just wanted to say hi and welcome at DINET!

[Kellysavedbygrace]

I don't know either. I haven't heard of that connection but I have a copy of the latest medical text, "Primer of the Autonomic Nervous System, 3rd Ed.". I searched "pulmonary embolism" and no search results were found. I would think if there were a connection that was well known among specialists in autonomic dysfunction there would have been something mentioned in that text. It was released last Nov so it is fairly up to date.

[Chaos]

I don't know that there is a connection but I have OI and my daughter was hospitalized with Pulmonary Emboli this spring. She had "massive clotting throughout her lungs". Scary times! Sorry about your sister. Hope she's doing ok.

My daughter also seems to have OI issues but hasn't wanted any formal testing done. She was symptomatic before the PEs but even more so afterwards.

[Mytwogirlsrox]

Could there be a correlation between the inactivity of OI and pulmonary emboli OR ans dysfunction people take birth control? Or atrial fib/ rhythm issues & PE?

[HyperPOTS8]

I have an autonomic disorder due to antiphospholipid syndrome/Hughes syndrome (APS) which is an autoimmune clotting disorder. This association has not yet been published but is per Professor,Hughes (who first described APS 29 years ago) whom has several other patients with both. The diagnosis of APS is by blood testing.

[Chaos]

I have also been reading a lot of articles on inflammation and it's role in causing a lot of chronic illnesses, including ME/CFS (which has a lot of overlap with POTS/OI). There has been a lot of information about inflammation and it's role in cardio vascular health issues, so there seems like there certainly could be some potential for some connection there.

[E Soskis]

Do you know the origin of the embolisms? - are they coming from your legs or somewhere else? - Pulmonary emboli that come from the back of the lower leg generally are due to the inactivity from being chronically ill. Sometimes from surgery or something like a long airplane flight with inactivity. With dysautonomia, it is the need to stay down and inactive just to maintain decent blood pressure. There is also the issue of clotting disorders as discussed - especially true with autoimmune dysautonomias or genetically acquired dysautonomias. From what I can tell, those of us with dysautonomia, whatever the type, are at increased risk for vascular collapse and heart events as well as pulmonay (lung) events due to this collapse - that would include pulmonary embolism - so sorry you are having these problems - it seems with dysautonomia, there is always something new happening to keep us on our toes.......

[Angela]

i believe it has very much to do with blood clotting/blood flow/coagulating/vein type related issues. My big sis has ms and my lil sis has severe fatigue/bleeding/unexplained bruising issues. I think pots and both of their disorders have to do with irregular blood flow due to one (or related) specific cause. I think the same with my left temporal brain waive slowing noted on eeg as well, was originally dx'd with simple complex siezures however I have a veinous anomoly in the same spot. What a coincidence, right? will talk more later just waiting for someone else on dinet to post on this theory and that is a whole new post i think........ hopefully we will start to connect some dots.....