r/dysautonomia • u/Safe_Lab_4811 • 2d ago
Diagnostic Process Tilt table test requires an escort
I’m finally scheduled for a tilt table test after the assumption of POTS for two years and a Dysautonomia diagnosis this year. When I was scheduling the hospital said I’m required to bring someone with me and stay for the duration to drive me home…. Well I’m a single mother with closest family 4 hours away, no friends close enough to take an entire day off work to sit at the hospital. Is it really necessary to have someone with you? Can I push back on the requirement if I take an Uber? Is the tilt table test really worth it?
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u/Jillmanji 1d ago
Here's my best advice: join a buy nothing group, and explain that you need a ride/escort to an appointment, and you can give more in-depth details via dm. I can almost guarantee that someone, someone out there, would be happy to help. Maybe offer to buy them a coffee, or a snack, or something as a lil "thank you"
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u/PotentialSteak6 1d ago
This is the best solution. There's a good chance there's a retired person or someone who would want to help out a single mom.
It's tough raising kids without family nearby, let alone dealing with all this by yourself
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u/spaghetti0223 1d ago
And if funds allow, you can hire someone on care.com. I have had good experiences with this.
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u/Jazzblike 1d ago
I just had it done yesterday, the escort is because they fully intend to make you pass out and you will need help getting home after that😵💫
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u/fighterpilottim 1d ago
I see lots of people say this, and if I course I believe them. But mercifully, my neurologist closely monitored my vitals in real time and stopped the tilt about 20 seconds before syncope (his words). He was not trying to force me to pass out, and he saw that it was imminent and stopped the test. That was enough for diagnosis. This is Stanford, btw.
And I did drive myself there and back, and no escort was required.
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u/Jazzblike 1d ago
That’s awesome. I was at a teaching hospital JHU and they are there to learn so they let it happen fully. I didn’t mind because I was also curious but I definitely wasn’t expecting to pass out that bad it was a little scary. I literally felt fine right up until I wasn’t .
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u/fighterpilottim 1d ago
Interesting. Yeah, I felt fine the entire time. I was shocked when I read the study results to find out I was about to faint, and the doctor confirmed it verbally. That was my first actual diagnosis that confirmed that I was sick, and I had been in poor health for years. I was also shocked to have a positive test result. Lots of shock to go around.
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u/Jazzblike 1d ago
While this wasn’t my first it is definitely the first that made me feel truly disabled. Experience that full syncope really did a number on me
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u/GeneralImplement6 1d ago
Same. It took me weeks to get back to “normal” after my TTT. I fully passed out also and, oof, the feeling of that full loss of control was the worst.
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u/BunnyPort 1d ago
Miglis? When I did mine there they tested until they got symptoms enough to confirm. Thankfully they didn't push to try to make me pass out.
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u/fighterpilottim 1d ago
I think my vitals were telling them everything they needed to know. They did ask me about what I was feeling at various points, but I don’t recall anything remarkable. Except for hating the ridiculously tight coil on my finger.
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u/BunnyPort 1d ago
Same here. My doctor was stuck in traffic so they left me strapped to the table for about a hour before they actually did my test so I only vaguely remember the finger coil. I was so worried that it would be another "normal" result because it was probably one of my best days in the last year at the time. They also did an EEG at the same time so I felt super sticky and gross after. I couldn't imagine taking that test on a normal day and also having them try to push me into passing out.
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u/intl-uni-help-please 1d ago
Is it possible to arrange medical transport? I know some medical offices have a service that will transport you back and forth after procedures to meet this requirement
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u/SavannahInChicago POTS 1d ago
Usually if a healthcare facility tells you this then you NEED someone to pick you up. If you do not they will usually cancel the procedure. They will be very strict on this.
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u/Meowserspaws 1d ago
My hospital doesn’t even accept rideshares as an option for such cases. I kind of understand why. It is an inconvenience when you don’t have anyone around. But based on my personal experience, I needed someone and I’m glad they had that policy. Had to be wheelchaired out and all and was out for the rest of the week. The second week was a bit better. Hopefully you’ll be fine but be prepared to also not be.
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u/thenletskeepdancing 1d ago
Hun, this is very important testing. It's time to reach out for help. I know it's hard for some of us. There must be someone. You owe it to yourself to get this done after all this wait.
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u/foibledagain 1d ago
It is a hell test. I was not stable enough to drive afterward, either time. It was different from a normal fainting episode because they specifically pushed me past my body’s tolerance point and then kept me there (which is, of course, the purpose of the test, but leads to a serious flare).
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u/Careless_Block8179 1d ago
This is worth asking someone to take a little time off for. I passed out at my tilt table test and the nurse said he would need to wheel me down to the entrance, which I think is a legal liability thing. I believe my hospital specified that I couldn't use ride-sharing, although my memory is hazy. They wanted someone WITH me -- and it was fair. (Errant thought: There are specific medical transport companies that may work here instead. They help people get to and from doctors appointments and often have some medical training, know how to help with mobility issues, etc. You might want to call the hospital and ask if that's ok.)
My husband was there with me and he just brought a computer and worked from the waiting room. Not a huge deal for him at all. I don't think you'd need a friend to take the whole day off of work -- a half-day, maybe, or they could take a whole day and just accompany you for a couple of hours. I bet there's someone in your life who wouldn't mind doing it and could use the rest of their day to run errands or take care of things they can't get done on weekends.
Like...would YOU rather spend a day working for some ungrateful boss embroiled in petty work drama or helping a real person who's grateful and who needs you figure out their health? I know I always like helping other people because it makes me feel like I'm being the kind of person I WANT to be, the one who knows which things in life are really important. I hope you can at least let yourself ask a few people.
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u/eaten_by_the_grue 1d ago
It is completely necessary. They WILL make you pass out one way or another on that table. My cardiologist fed me a nitro pill during mine. You're gonna feel like crap after. I was grateful for the wheelchair ride back to the pickup area. I would try asking any of the friends you have for help, they might surprise you. Also someone mentioned posting in a social media group which might work. The hospital's chaplain team or social workers might also have resources to help folks find necessary transport.
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u/jessikawithak 1d ago
I didn’t have anyone take me or drive me home and neither did one of my friends. I wonder if it’s just that hospital’s policy
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u/contrarycucumber 1d ago
The hospital i had it done at an hour away from where i live had this policy but sprang it on me last minute. I don't pass out and knew I'd be ok to drive so i had to lie to them to get them to release and said i had a friend coming. If i had felt weird after the test I would have called someone, but instead i waited an hour to make sure I'd be fine and downed a gatorade.
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u/Lucky_wildflower 1d ago
Maybe see if you can pay someone to do it. Like if you know any babysitters that are driving age—or post on Nextdoor that you need a caregiver for a day.
I drove myself home, but they made me stay for some amount of time after the test to recover—maybe an hour?
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u/Safe_Lab_4811 1d ago
I definitely know a babysitter that’s a great idea. Did you feel the test was helpful? My cardiologist says we’d treat you the same way an assumption of pots with or without the tilt table test.
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u/Lucky_wildflower 1d ago
My dr wouldn’t diagnose POTS without it. After my dx, he switched me from atenolol to ivabradine, which requires a yearly prior authorization because it’s expensive. Ivabradine gave me my life back—not 100%, but I really feel so much better. The one other benefit is that in my area, the main POTS guy is starting to reduce his patient load. It gives me some peace of mind knowing that I can switch to another cardiologist nearby and already have the test on record to back up my treatment plan. I would be really upset if someone tried to change my meds or send me for further testing before renewing a prescription.
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u/audvisial 1d ago
I did mine during the height of Covid and couldn't be escorted in. I also had to wear a mask the whole time. It was literally horrible. I thought I was gonna die.
Stumbled down to my husband waiting in the car, and thought I'd pass out.
Definitely need an escort.
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u/Positivity-77 1d ago
These horror stories are exactly why I won’t get this test 🥹🥹 especially since this all started from a vasovagal syncope. Nope nope nope. 🙂↔️
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u/pomegranatepants99 1d ago
That’s weird. I just sat in the lobby until I was ready and drove myself to work after.
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u/TheRantingPogi 1d ago
I didn't think I would need it, but I was wrong. You'll be dizzy and nauseated all day and probably so tachycardia that you'd have an accident driving yourself. Be safe and ask a church member or something..
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u/teddybear65 1d ago
I don't understand I was not dizzy I did get nauseated but I come right back when this happens to me I mean it's a frequent thing.
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u/TheRantingPogi 1d ago
Well, I didn't pass out, but the medicine and test plus QSWEAT test really messed me up.
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u/OldMedium8246 1d ago
Even if you pass out regularly, it’s not the same. When you normally could bring yourself to the ground or lay down as you feel it coming on, you get none of that relief during the test. It’s genuinely like slow torture when your body hits that tipping point. I was so tired and weak for a couple of days after. I was physically unable to care for my son.
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u/GnowledgedGnome :doge: 1d ago
They didn't do this for mine (though it sounds like from other comments it's common)
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u/Wonderful-Place-3649 1d ago
I pushed back for all the same reasons you’ve listed and they readily relented with the compromise of no driving - take an Uber.
I have since learned that I most likely would have qualified for free medical transport for this test but I honestly probably still would have done an Uber as opposed to all the waiting associated with group transportation as I was not particularly comfy after the test.
eta: typos
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u/Tall_Stock7688 1d ago
I had to fly my escort out to mine, as i didn't know anyone near the test location.
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u/LuckyNerve 1d ago
I wasn’t required to. I didn’t pass out during the test but I hyperventilated and straight up could not breathe and they released me 15 minutes later. It was the worst medical experience I’ve had.
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u/nnopes 1d ago
Usually hospitals don't require someone with you the entire time, just someone to drive you home. So if you have someone that can drop you off and drop by to pick you up at the end, you're good to go. When I lived in cities, confirmation that I had a ride home (uber, taxi, etc) was usually enough (they didn't love public transit due to the potential for issues). I'd definitely ask about an uber or ask for their recommendations. Sometimes there are organizations that will drive people to and from medical appointments (the hospital social workers are usually the most knowlegeable about this).
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u/KittyKratt 1d ago
I didn't have anyone with me, they didn't tell me I needed a driver. Why is my experience so much different from everyone else's?
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u/strangeicare 1d ago
I wasn't told to have an escort- I wish I had one becausw I felt like shit from stopping a handful of medications for extensive testing, but it was ok
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1d ago
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u/IDK_SoundsRight 1d ago
Request an "autonomic reflex test" not a conventional tilt table..
The way it was explained to me was, with neurology they do the autonomic reflex test to see what your symptoms are and how severe they can get in that setting.
But over in cardiology, they do a "tilt table test" where they try to push you to your most extremes with drugs to make sure your heart isn't going to explode... Which isn't necessary for pots.. it's not cardiac. ..
No drugs... And hopefully no passing out.
But still gets the full readings for diagnosis.
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u/issiautng 1d ago
I got diagnosed at JHU (by happenstance, I live nearby) and they let my then-bf (now husband) drop me off and pick me up. I was having a really good day, so I was actually worried about the test not working, but my symptoms were "textbook." They made him come fetch me at pickup, not just release me on my word that I have a ride waiting for me. They definitely wouldn't allow a ride share or taxi. He actually had to come in to the hospital and be visibly an adult and say "yep, I'll be driving her home." I felt pretty miserable for the rest of the day because they successfully sent me from "good day, feeling like a normal person" into a flare. I took it easy for the afternoon and was fine again by the next morning. Maybe I could have driven myself home, but it wouldn't have been comfortable or smart.
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u/sillybody 50F unique snowflake 23h ago
It's necessary for your safety. I know it sucks from an accessibility standpoint, though. I only have a couple of good friends in town and their schedules are challenging.
I rarely pass out on regular days, I'm more likely to gray out. But I passed out hard during my TTT. My BP was 39/11. I felt awful after and the nurse explained that, basically, my body thought it was coming back from death.
A different provider in the same hospital system explained to me that they had a patient have a "negative experience" with an Uber driver after a procedure, and that's why they no longer allowed patients to use them after procedures.
The combo of recovering from death and possibly needing to navigate a difficult/unsafe situation doesn't sound like a good one.
I hope your test goes well!
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u/BunnyPort 1d ago
You should just call and ask them. Tell them you have someone who can drop you off and pick you up, but it will be difficult for them to stay the entire time. Ask if that would be ok or if you need to make further arrangements. I've seen ppl get heart stents etc with their kid just dropping them off so it certainly doesn't hurt to ask. Just make it clear that it will be difficult to arrange a chaperone, not impossible if they say it has to be a chaperone basically. Also, what state are you in? I doubt you are in my city, but I'm sure many of us like me would be happy to help if you are local.
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u/LJAM1 1d ago
If you're getting or can get the treatment you need, and your insurance is covering it, the TTT is absolutely not necessary. The official POTS diagnosis is only necessary if it's required to get the medication you need or for your insurance to cover it. I also have ME/CFS, and neither my cardiologist not my electrophysiologist felt it was necessary to put me through the test and damage my health for months or even permanently. They were both willing to prescribe medication, and my insurance covered it
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u/teddybear65 1d ago
Why? They aren't giving you a sedative for that test. I went alone did the test and drove home after no heart beat during the test.
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u/neversayaword 2d ago
It is necessary, period. The hospital won't accept the liability for you to go home alone after the test. It's worth it in my opinion.