Andy T

Cheers, I too have a port (Hickman line). yes we do do have risks associated with a central line but without it, quality of life is much reduced.

I have my fluids twice weekly, 1 litre over 4 hours. It has improved my symptoms so much I really cannot believe it. I find faster infusions just give me a really bad headache. Dizziness is almost gone, postural sweating, nausea and breathlessness have all but disappeared. BP is now normal (120/60 or thereabouts), where it was 75/45 previously or lower. Joining the gym next, which is an achievement considering I struggled with a flight of stairs 2 months ago.

It wasn’t easy but just keep pushing! ive had POTS since 2012 but had lots of problems this year probably worse with the hot summer. In June my BP had a low of 55/29 with also loss off blood flow to the kidney. Had seven admissions since June each time dehydrated & low kidney function (I drink 3-5 litres per day). Each time I recover with IV. I was discharged from my last admission with a plan for my GP to do weekly bloods & fluids as required, However, I soon found out our local health trust had no facility to supply fluids out of hospital. In the end I tracked down & emailed the local “community IV team” which is run by the district nurses to provide antibiotics & treatments mainly to cancer patients. They arranged a meeting at the local hospital with a consultant to over see things & another doctor. It was all agreed in minutes & they gave me fluids on the spot after the meeting (dehydrated again). I get the fluids at a local NHS health centre twice weekly (I’m having them as I type this). Central line goes in this afternoon. hope this helps

Interesting reading all you guys posts on IV fluids. Over here in the UK it seems much more difficult to get IV for POTS. I’ve recently started twice weekly (for around a month now) and get my central line in two days. Anybody in the UK had trouble/success accessing IV as a treatment option?

Hi Peter, my edema is definitely caused by vascular leakage during standing. I too have mild heart damage, but this has happened as a result of overworking the heart. On initial diagnosis heart was fine & all usual causes of edema were excluded. my diagnosis was confirmed by tilt table testing, where the test was terminated at 19 mins due to rapid drop in BP & HR. My symptoms came on within 2 minutes. A neurologist conducted many bedside tests afterwards but my leg sensaowere normal except sensation of temperature.

Hi, I also have simultaneous fluid depletion and edema leading to low blood volume & low blood pressure. the edema forms very rapidly when I stand via capillary leakage. I loose so much volume it drops my kidney function. the edema resolves quickly on lying down. My docs say the underlying problem is autonomic neuropathy preventing blood vessel constriction allowing blood to pool. any of this similar to yourself?

Yeah will do. Once I’ve had fluids and lay down enough I get all my kidney function back. I’m amazed how robust my kidney is, must have had over 50 episodes of acute kidney failure. I’m interested to hear if anyone else gets the leaking blood vessels & oedema!

Hi & thanks for the reply. when this was first discovered the medical team got very excited over the possibility of nutcracker syndrome. Apparently the kidney did move slightly but didn’t compromise the renal blood flow. The initial discovery began with 2 hourly blood tests (while in bed) followed by another test after 2 hours walking. (I was in hospital for 5 months at the time). after the walk, creatinine had increased 70%. I’ve had renograms of renal artery & nothing is abnormal. Eventually this led to testing for Autonomic dysfunction. I have problems with hypotension & get sudden drops of 60 points on systolic pressure. My kidney function declines continually, providing I’m not lying down.

Hi guys, im new here but had POTS since 2012. My UREA CREATININE & GFR fluctuate wildly each week and even in the same day. Currently my GFR is dropping from around 76 (I only have 1 kidney), down to high 20’s within 5 days. I stand up, function (actually the renal blood flow) drops. if I lie down long enough it recovers slightly but normally I need IV fluids. im normally hypovolemic & the pooling blood allows extracellular fluids to leak out rapidly. Anybody else got similar?