u/FirstAidPoetry

Well, I was told the results from the tilt table test would take up to two weeks to reach my general doctor and sure, they did. He's now written notes that he's made a "consult referral" to rehab, because he doesn't know what to do.

Rehab doesn't even deal with POTS, that's Endocrine, Cardiology or ... honestly I forgot the third one, I'm having some bad brain fog today, but it's _not_ Rehab. Rehab should come into play once you have a diagnosis and medication, not before.

To boot, he's written I "may" get a POTS diagnosis, so now I have to push him through all kinds of hoops to finish that, and then get the subtype confirmed.

He has no idea what medications to give me. I told him, and he was just all confused. I asked if I could at least get the one against the nausea while he does his research. Nope.

So now I'm stuck in limbo waiting for him to hear back from Rehab, and they're notoriously slow, especially during the summer with all the vacations. After that, I might get him to send me back to where I did the tilt table test which is where he should have sent me in the first place.

I know this isn't my most elegant post, I'm tired and frustrated, all while I'm also doing some H1/H2 inhibitor medication tests against MCAS and it's making me more loopy and tired than usual.

I’ve seen a few people being worried about doing the tilt table test, so I thought I’d add my experience here.

Some disclaimers first: I have C-PTSD, possibly a light autism, I’m an absolute wuss. Also, everyone’s experience will be different.

First off: I heard the test can be up to 6 hours long or “until the patient faints”. Not so here at least. Mine was interrupted at 20 minutes but would have been 30 otherwise.

Secondly: you don’t get tilted back and forth. You get tilted up to 60° from horizontal. Once.

Weirdly enough, just bring tilted up like that felt…wrong. Weird. I did not expect that. It wasn’t horrible though.

Then slowly my hands started to go numb, i started having trouble swallowing, my breathing got out of sync with my need for air, nausea, cold sweating all over, then this diffuse feeling of not being sure if I was going to faint or throw up. And then it went dark.

I recovered mostly after five minutes and could sit up, even if I still about one hour later now, still feel wrung out.

Was it fun? No.
Would I do it again? If you paid me. Lots. Maybe for €3000. Maybe ;)
Was it worth it? Heck yes.

To begin with, I should clarify I have HyperPots.

I have had my sister visit for a couple of days. She's been great in nagging me (in the best of ways) to remind me to walk slower, not get up so fast, eat more often and more carbs, not carry anything heavy, to drink more and not use the stairs.

What can I say, I'm an impatient person and I hate being a burden to anyone so I do dumb things 😄

On day three I measured my resting pulse. 60 BPM.

To put that into perspective, my normal resting pulse while both sitting and lying down, is usually somewhere between 93-140.

One of the big problems with POTS: It's really hard to see what affects you or not because it can be cumulative and/or over time. That hot shower you took, that can hit you later that day. Same with that bag you carried from the store or that you walked up just one set of stairs.

My brain keeps going "eeh it's just 20 steps up, why wait for the elevator" or "Ehh I'm just carrying a carton of milk and some butter, it'll be OK, it's just six blocks to the store"

Yeah apparently not. I _knew_ this, because I've several times crashed so hard after a grocery run, that I have been splayed out on the hallway floor for half an hour before I can get up and put the groceries away and pass out in bed.

So just a reminder to you all, even if you're not as stubborn as I am: Be careful of the little things. They matter.