Anyone been diagnosed with Dysautonomia?

[Mumma02]

Just that really. What were/are your symptoms and how were you diagnosed? Thanks.

Yes- POTS. Diagnosed with a tilt table test.
Also vasovagal syncope when I was a teen/in my 20s.

PoTS here, triggered by Covid. I sought out an autonomic specialist via pots.org.uk and pushed to get a referral through my long covid clinic. If I hadn't have pushed, I wouldn't have got one, and a cardiologist before that pretty much said "so what?". I was diagnosed through an active stand test, which is less full on than a tilt table.

The symptoms are hard to distinguish from long covid since there's so much overlap (fatigue, brain fog etc.) but the very obviously PoTSy ones are postural tachycardia (HR usually rises by about 50-60bpm from resting), weakness and shakiness on standing for too long, shortness of breath (feels dysautonomic since it varies with hormone fluctuations), inability to walk any distance without having a horrid fatigue crash, mystery internal tremors, and so on.

My symptoms are definitely worse since having covid @FSVin. Do you mind me asking what treatment they advised?

Initially, the basics of fluids, salts, compression and gentle rehab. They used to do an in person rehab program I think but that's been suspended because of Covid - the docs I was sent instead to self manage it are accessible below. With increased fluids and salts not making a major difference, meds are prescribed. Beta blockers, midodrine and fludrocortisone - possibly others I don't know of yet

www.newcastle-hospitals.nhs.uk/services/chronic-fatigue/

Try vit B1

www.hormonesmatter.com/artists-decades-long-dysautonomia-treated-with-thiamine/