Does anyone have experience with IV infusions for POTS?
I developed long covid after contracting covid in back in December 2022 and in April I started to show symptoms for POTS. (Fainting, dizziness, orthostatic tachycardia, brain fog, extreme fatigue, heat intolerance, and maybe a few other things my mushy brain can’t remember right now)
I had many tests done to rule out serious cardiac disease. I wasn’t put on beta blockers but was advised to drink lots of water and electrolyte drinks. I also take multi mineral, iron and vitB supplements.
The thing is, the heat. I cannot tolerate it. On Wednesday the moment I stepped outside around 4 pm, I immediately got dizzy, nauseous and was unable to move. I tried to get out of home a couple more times after laying down and it wasn’t happening.
I am getting closer to the disabled zone, if I’m not already there. I’ve told my family about my condition and as much as they’re accepting and understanding for now they assume it will eventually go away and I don’t know how things will go in the future. I don’t know if POTS is here to stay.
My question is, does anyone get regular IV infusions for POTS? Or is there a clinic I can go and request infusions with or without referral?
Last time I fainted they gave me IV at the ER, the ER doctor was knowledgeable about POTS and he quickly put my on electrolytes.
I felt great for a few day and had a mental clarity after a long break. (Mild to severe brain fog is my new normal)
Thanks for help~
4 comments
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I don’t have personal experience receiving this treatment, but if you have a GP that knows your medical history, at a rather large clinic I don’t think anyone would have a problem administering a saline drip for you. Explain clearly that it makes your symptoms manageable when nothing else has. It should be covered by insurance I think.
Are you in Tokyo? It may be beneficial to seek out clinics running long COVID services. (新型コロナウイルス後遺症外来/しんがたコロナウイルスこういしょうがいらい) Like Mirai Clinic in Nihonbashi. They may offer to try other treatments as well. [Here](https://www.hokeniryo.metro.tokyo.lg.jp/kansen/corona_portal/link/iryokikan.html) is list of all the clinics registered in Tokyo. Unfortunately COVID attacks receptors on all blood vessels in the body, so your situation is quite common. Good luck seeking help.
Have you had a 2nd opinion?
My sister had very similar symptoms for years, even before covid. (Which she unfortunately had twice. As a nurse it’s hard to avoid and only made her symptoms worse) Then she finally met a doctor who told her she needs a pace maker.
She’s had no problems since she had the day surgery for a pacemaker.
Pretty much any clinic should be willing and able to provide saline drips if you explain your symptoms and how you usually feel better afterwards. I don’t have POTS, but was showing weird symptoms that my initial doctor thought was a kind of dysautonomia a year back, and kept feeling faint all the time. I’d pretty much pop into any clinic that could take me ASAP, explain the situation, and they’d hook me up.
I second seeking out clinics running long COVID services though. Apart from administering IV infusions, they might also be more willing to give medications like beta blockers. Plus I hear quite a few of them allow online consultations. The downside is that many of them are absolutely booked at the moment…
All the best.