My experience getting a tilt table test, posted for posterity

[untonuggan]

Intro

So yesterday I got Officially Diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of Dysautonomia, which is apparently what has been causing the dizziness and the falling down and many things that are the opposite of helpful. While I'd had an ANSAR test previously that was indicative of POTS, the gold standard for POTS diagnosis is the tilt table test. (Note: I've also had MRIs, MRAs, Stress Echocardiograms, "regular" Echocardiograms, and more tests overall than I'd care to remember...)

The tilt table and the thought of a tilt table totally freaked me out, because I'd been told: to eat lightly; that people pass out; that the table moves fast; other scary things.
I thought I'd document here what I actually experienced so people who are considering similar tests can hopefully feel less of a sense of DOOM (or a need to sing Grr's Doom song), and also lay out what the Dr told me about some POTS stuff so if anyone is facing a POTS diagnosis then they also won't feel as intimidated by all the scary things on the internet message boards.

What happens during a tilt table test?

In the end, I told myself it was going to be like a free roller coaster ride, only it wasn't like a roller coaster ride at all.

Basically, a tech (or two, mine were very nice fortunately) put a bunch of leads on your body in places like your forehead, hands, feet, sides of your abdomen, and sides of your neck. There is no naked and I didn't have to wear a gown. They also put on a blood pressure cuff. During the test they may also add a blood oxygen finger cuff thing. These measure things like heart rate, blood pressure, the fluid volume in your neck, etc. They have you lie on a table with your feet flat against a board at the bottom. There are two very wide straps, one across your legs that for me went from mid-calf to hip (I'm short though) and another across your chest around heart level that is about half the width of the other one. These are to stop you from falling off the table when they tilt it upright.

During the actual test, for 10 minutes the table is flat and you are flat and they are getting a baseline reading. You have to stay very still, because moving can throw off the readings. The blood pressure cuff goes off about every 2 minutes. After they get a baseline, they move the table 70 degrees to almost but not quite upright. Then you stay there for 20 minutes and tell them of any symptoms you are having. (At this point, some people pass out but I did not. Apparently the passing out usually only lasts about a minute and they are there to catch you and tell you where you are.) After 20 minutes, they lower the table back to flat and ask how you feel.

What does it feel like when it happens?

For me, it was fine while I was flat but (because of the POTS) kind of awful when I had to be upright for 20 minutes. If it weren't for the straps I might have fallen off the table because of my legs giving way; I was dizzy; I felt very heavy; I was nauseous. But honestly, if you do have dysautonomia, you have probably experienced all these symptoms before. You probably just have the good sense to sit down when you start experiencing them, amirite? Well here you don't get that luxury.

I am glad I didn't call off the test, as I thought I might have to at one point when I was struck by a big bout of Imposter Syndrome and physical discomfort midway through, because my heart rate didn't hit the required 30 beat per minute increase for POTS until further into the test. If I'd been like "F this I'm out of here!" I wouldn't have answers, I wouldn't have a diagnosis, and I wouldn't be able to get treatment. So yes, it felt bloody awful to stand strapped to a board for 20 minutes with a bunch of wires sticking from me. But it's temporary and I'm glad I did it.

So what's your prognosis? Are you stuck as the Magical Falling Liz for all time?

Dr. says long recovery process, but improvements possible. No promises how much, probably because we live in the Land of Lawyers. He did say I'd probably start feeling better in 5-6 months. He put me on some meds and in a month we're going to start a conditioning program to help me be better at Standing. *fingers crossed*

Check back later for more posts on the Saga of Dysautonomia.

Comments

[tarnished]

Oh wow, this is so informative and interesting. I look forward to your future updates and good luck with everything - and also thanks for posting, because I knew absolutely nothing about it before reading this post. And also congrats on making it through the test and doing that for yourself!

[tarnished]

Also how do you pronounce dysautonomia?

[untonuggan]

dis-auto-gnome-ee-ah

(is how I can think of writing it, but I am not a phoneticist)

[untonuggan]

Thank you for your support and interest! XD

AGH test was definitely a Test, but very worth it in the end. As is much of life.

[sid]

So glad you stuck it out and got your diagnosis! *crosses fingers for happy-making results down the road*

[untonuggan]

Thank you! *crosses fingers too*

[pretty_panther]

I'm glad you have a diagnosis at least now. I've found that even if progress is slow and non-existent even in the beginning having a name for something is really good for your piece of mind :3

[untonuggan]

Heh, the way things have been going, 5-6 months sounds like frelling light speed. Diagnosis ftw.

♥

[altamira16]

How do you feel Imposter Syndrome about a medical test? I am getting silly thinking about this.

Fake Doctor: Your blood pressure looks high.
Fake Me: I am worried about my score on a blood pressure test. Everyone around me has better blood pressure. If I could just study harder for this test! Maybe I will go get some exercise. Oh wait. That raises your blood pressure. Doh!

Imposter Syndrome

[untonuggan]

They kept asking me to describe my symptoms as they were tilting the table, before, after &tc and I felt really awful but was afraid that nothing would show up physically, and that it really was "all in my head."

Re: Imposter Syndrome

[altamira16]

Oh, I hate the "we don't know what is wrong with you so we are going to tell you it is psychological" thing.

[cadenzamuse]

I'm glad you survived the tilt-table test, and I appreciate your documentation of it. I hate to say "yay diagnosis!" because I feel like so often you really need a diagnosis because of insurance, rather than just being able to have a doctor say, "It's probably something like this; we'll do these things and get around to narrowing it down and doing more conclusive tests while we work on making you better." But yay diagnosis! And yay feeling better eventually!

[untonuggan]

Thank you very much for this. ♥ Exactly what I needed to hear.

[shanaqui]

I don't know much about this but I was really grateful for your post; I found when I was about to have my gallbladder taken out that the internet is full of scary personal anecdotes from people who had bad experiences or didn't get what they needed out of a test or procedure, and very few "well, this was useful" ones. So while this doesn't apply to me, I'm still glad it's out there.

[untonuggan]

♥ Glad it was helpful to you, and hopefully also helpful to others!

[zcat_abroad]

This is very interesting - not something I had previously met anywhere. And yet, the message I'm taking away from this is Grrr's song.

Glad there's an end in sight!

*Doom doom doom doom, doom doom doom doom*

[untonuggan]

"I'm gonna sing the doom song!"

Heh

[vae]

Tilt table tests are thoroughly unpleasant - they do them for labyrinthitis, too, as well as tests where they fill your inner ear with water and track your eye responses - but they really do seem to deliver good results for diagnosis. Sometimes I think the tests are so bad to put people off having them unless they really need to.

[untonuggan]

Yeah, it does seem to be a Conspiracy. I think, though, the tests may be bad similar to how tampons are terrible. If men/doctors had to undergo them regularly, they would be much better.

[jesse_the_k]

Thanks for this public-service description of the TTT.

Mine was in an outpatient room at the hospital, administered by a cardiologist, and almost 20 years ago. One difference was they inserted an intravenous line and hung a bag of saline so they could control my blood volume.

When they tilted me to 70° I said, "Feels great!" and I "stood" there a while feeling like a total impostor. Then they injected a hint of adrenalin in the IV, and I was out like a light. I asked the cardiologist, "So, what to do?" and he said, "I don't know. I've never done this for someone with CFS before. Good luck!"

Ah doctors, can't live without 'em, can't kill 'em.

[untonuggan]

Ah doctors, can't live without 'em, can't kill 'em.

Couldn't have put it better myself. Lol.

Hope you have found some answers in the intervening 20 years.

[jesse_the_k]

I wish I had miracle stories to share but no meds have worked for me. I sure hope there have been some better meds and better science in the intervening years.

My life includes lots of pickles and all the salt I want; drinking vast quantities of liquids; being aware of movements, positions & environments where I'm at risk for passing out; and (most importantly, I think) regular exercise in a swimming pool. In the water blood pressure isn't an issue, since the water acts on all the blood vessels equally and I'm mostly horizontal. This permits me to do vigorous exercise which would make me keel over on land.

Happy to share stories, happy to shut up :,) There's at least one other POTS person on DW, who's been dealing even with this stuff even longer: mariness.

[untonuggan]

Good to know! Thanks for responding. Om nom nom all the olives. I've been on a low salt diet for, like, forever so the high salt thing is really weird but there are select things that were always "forbidden" foods that I'm eating with gusto (feta, omg).

Pools are kinda scary for me, so I'm easing into them. However, have had good luck so far with recumbent trike except that sometimes when I finish triking I feel like falling over. But triking itself = bestest exercise for lizcommotions. So far. Apparently I'm getting a whole PT program in about a month, after the meds kick in or something.

Stories are great!

[jesse_the_k]

FETA is the best. I recommend a short course in experimental Mediterranean gastronomy: bovine, ovine & caprine feta cross-tabulated with black and green olives. Salty bliss. (Also pickles.)

I'm so glad you're getting a whole PT program.

I used to be a devoted cyclist, so I tried recumbent (squid trike: two wheels in front) and I LOVED being able to push myself forward!* But the angle of its seat put my head in the unfortunate "let's faint now" position. That might contribute to the done fall over feeling. I'm sure there are lots of different backrests for recumbents.

Weirdest thing about the faints and 90%-faints is that they wipe me out afterwards. I don't get why it is such a big deal. After my TTT I was prone for days.

* I'm a power wheelchair user, with NMH/POTS being part of why.

[brigid]

I'm glad it went well for you, and as counter intuitive as it sounds, yay for diagnosis! That means you can progress in treatment! (at least in theory)

[untonuggan]

Thanks! Yeah, in theory it's a good thing, it's just one of those, "Oh boy, another!" kinda things too.