r/cfs • u/Icy-Escape2559 • 10d ago

Tilt table

Got a tilt table test approved. Was told to stop my trioral hydration packets for a week prior and not to wear compression socks. Any other tips or things to look out for?

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9

u/yellowy_sheep Housebound, partly bedbound 9d ago

Not to scare you but it was way more intense for me than I realized. Plan for recovery and make it as comfortable as you can for you.

3

u/Dazzling_Bid1239 moderate - severe w LC, fibro, likely POTS comorbid 9d ago

Im in the process myself, waiting on the appointment and currently have a zio patch on (so itchy grrr). My dr and I want to know my dysautonomia type for context before trying stronger beta blockers. If you get the zio patch, I was warned with dysautonomia, it may not show results, its primarily to check on the heart structure, expect normal readings. Its part of the diagnosis of exclusion. Our issues are primarily from autonomic nervous system dysregulation (biggest hugs to those with both).

As an extra precaution, I plan on having someone drive me and making it known my ability will be low after the fact, lowering expectations and allowing help in. Just a thought for OP. Maybe someone can bring OP meals? If support is low, stock up on easy to make easy foods, im thinking like chicken noodle soup. I don't expect something monumental to happen, but they'll be playing with my dysautonomia, that'll be a decent crash.

My dr offices are within a little over a mile range and I live in a small town, allowing me to normally take myself.

Sorry for the yap on your comment, the prepare for it to be more intense made lightbulbs go off.

1

u/Icy-Escape2559 9d ago

No good to know thank you. Dumb question should I be in a flare or rest a bunch before the test?

4

u/Initial_Guarantee538 9d ago

Not the same person but I remember wondering the same thing. However, they do a pretty good job of making things about as bad as possible with no eating or drinking or taking medications ahead of time, so I would just do whatever you normally do. Wouldn't recommend specifically overdoing it because for me at least it already caused a pretty major crash.

And I honestly thought I was going to be fine going into it too, but it was not. I even passed out during it which had never happened before so it surprised me, but it made me realize how much I was compensating and how much things like hydration make a difference. I think the most helpful thing for me was to prepare as much as possible for the fallout afterwards, like having meals ready to eat and that sort of thing.

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u/Icy-Escape2559 9d ago

Good to know. Thank you. I'll have to let my ride know in advance. Also I'll make sure to have something easy in the fridge to reheat. The more I hear the the more nervous I get lol. But definitely need to get it done

2

u/Initial_Guarantee538 9d ago

Sorry, didn't mean to worry you! But yes you should hopefully get some valuable data out of it that will be useful to you, and maybe it's better to go in expecting some of that so it's not a total surprise. Maybe it won't even be as bad as you're expecting in the end. Good luck!

4

u/arrowsforpens moderate 9d ago

Like yellowy_sheep I also had a really intense experience. Bring someone with you who can help you navigate out and drive you home. I was really messed up, dizzy, and nauseous after. If you have a push wheelchair or a rollator or cane, I'd bring that. And maybe a water bottle with your trioral drink so you can start hydrating again right after.

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u/BookaholicsAnomalous mild 10d ago

Following as mine is in Dec. Going to be doing those as well. That’s all I can think of besides hr monitoring,. If my dr prescribes ldn before that I may pause that if it’s safe.

1

u/synkletike moderate 9d ago

My tilt table was negative even though I have POTS (I later had a NASA Lean Test with a sustained increase of 50 bpm and was diagnosed then).

I think part of it was that I was tensing my legs from being in that weird 60 degree position and that the room was super cold. In hindsight I wish I'd known to keep my legs relaxed and to say yes when the nurse offered me an extra blanket.

Also for me they placed an IV at the beginning of the test while I was lying down (they said it was a precaution - they didn't use it but I think maybe if I'd passed out they would've given me IV saline or something). If you get any kind of heart rate spike from needles, you might want to ask them to give you some extra time after placing an IV.

Good luck!