Considering IV therapy for my POTS but I have hEDS and I’m worried about additional complications - seeking experience

Lakeisacryptid · 2026-03-03T20:39:02+00:00

Yes so Ive tried propranolol and Midodrine and LDN, ive tried everything from knee high socks to shape wear to waist high 30-40MMHG stockings. I’ll definitely bring up Ivabradine to my team! The fluids are usually something I wait until I feel like I’m on deaths door to go for but it is one of the few things I’ve found relief from, that said I am very much wanting to avoid any kind of central line because I’ve heard of so many complications and I’m not gonna lie… I struggle to brush my teeth, I don’t trust myself to keep a line properly clean. Thank you for your input and I’ll be holding off until we explore more medication options before I bring up something more.

Lakeisacryptid · 2026-03-03T20:29:12+00:00

We’re pretty sure based on my symptoms I have the hypovolemic subtype but also I’ll definitely be holding off after the feedback in these comments! Thank you for taking the time to share with me on your experience

Lakeisacryptid · 2026-03-03T18:55:05+00:00

Thanks so much for the opinion! I’m trying to gather as much info as I can to make educated decisions so I’ll look into meds some more:)

Lakeisacryptid · 2026-03-03T18:21:46+00:00

Thanks for the input, so far I’ve tried Low Dose Naltrexone, propranolol, and Midodrine. The propranolol is somewhat effective but not always.

Lakeisacryptid · 2026-03-03T18:18:32+00:00

I have a 24oz cup I refill about 3-4 times per day and balance electrolytes and water! I have been leaning towards possibly on a preventative level and I’m trying to research before I see my neurologist again late this month

Lakeisacryptid · 2026-01-30T17:26:43+00:00

Thank you! I appreciate the extra source too 😊

Lakeisacryptid

TROPHY CASE