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untonugganIntro
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.
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.
no subject
Date: 2013-07-09 05:45 pm (UTC)♥