Sep. 12th, 2014 02:31 pm
lizcommotion: four different colored panels of the MRI image of a brain (brain)
So I have had such trouble finding POTS doctors for, like, ever.

Apparently the key search term is not anything to do with dysautonomia. It is "electrophysiologist cardiologist" or some variation of that.

Also because they think the general public will have trouble remembering that, the professional association associated with that has a horrible website.

BUT there is a website for the Heart Rhythm Society which is basically the same thing, because even though it basically spends the whole time talking about atrial fib and arrhythmias, when I have called any of the doctors that they have IN THEIR DATABASE OF DOCTORS, the receptionists KNOW WHAT POTS IS, they do tilt table testing in house, and they can schedule me with a doctor who specializes in the weird thing I have.

So basically it's a secret society of doctors who treat POTS but don't advertise? IDEK. Like nowhere does it say anywhere "POTS" or "dysautonomia" or "hypotension" or whatever, BUT THEY TOTALLY TREAT THOSE THINGS.

Did I mention that their database of doctors appears to be international?


cynicism about doctors )
lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)
…I am either:
  1. A mermaid who has given up her underwater breathing and tail fins and shell bra to a sea witch in exchange for legs and talking like a human.
  2. A selkie whose skin has been stolen while I was out on land.
  3. An X-man/person whose superpower is feeling AWESOME in cold water (think 62 degrees) but whose kryptonite is anything warm.
  4. Someone with Postural Orthostatic Tachycardia Syndrome whose symptoms disappear in freaking cold sea water, and whose limbs also return to their proper size & color even when everyone in the sea at the same time (all two other people) eventually have their feet turn yellow. Yellow. My feet go from purplish to a color I'd call "regular." My fingers go from a shape I call "sausage" to one I'd call "bendable without screaming."

Personally, I think any of the first three would be kind of awesome (although the mermaid and selkie stories tend to end rather tragically like, always; also if I were an X-man person I would get to meet Professor Xavier and Magneto theoretically yes I know that it is not "real" just let me have my fantasy!)

I did somewhat enjoy chuckling to myself at the mere mortals who saw us in the water and thought, "Oh yes swimming sounds fun," and then mostly made it to about knee depth before running out screaming.

This is a vast improvement from yesterday, when I was basically curled up in a Ball Of Pain crying. Two swims and an epically awesome massage later and I feel vastly improved. Really wish I could steal the massage therapist back home with me (and his really cute dog); too bad they probably would not enjoy that and also the ocean is not portable either.

Today we bought Chance a cheap feather boa, because he has a Thing for feathers. At the moment he is not sure What to do with it. Partner and I are pretty sure he will probable decide in the middle of the night, and we will wake up in a room full of  feathers and no boa.
lizcommotion: A hand-drawn/colored lovely little creature with a knitted cap and piles of yarn behind it knitting a scarf (knitting creature)
...Chance apparently knew I needed extra kitty loving, because twice he stood on his hind legs, kneaded my chest gently, and licked me on my face.

Also in the good things realm, I think I *may* possibly have solved the mystery of the stabbing pains at night. I believe it has to do with the long-standing thermostat wars that have occurred in my household since time immemorial, that go something along the lines of, "I am cold and it is cool outside, even though no windows are open to let in the cool air, I will turn off the cooling completely" and then someone else going, "Why is it so f'ing hot in here, who turned off the cooling??? I will now turn the house into a fridge."

So last night I was SUPER hot and also, maybe randomly, having the pains. So I thought, I will go make it a degree or two cooler or at least turn the cooling *back on* if the person-who-shall-remain-nameless has turned it off (I forget if they had). And guess what? The pain stopped.

Oh, POTS/dysautonomia and your bizarre ways of saying "I am heat intolerant make it stop."

(In retrospect, maybe I could have figured this out sooner if I had thought more about how when the pain started, it would stop if I slept on the couch...in the coolest room in the house.)

Praise be to All God(esse)s of Sleep, and may this problem resolve itself with a minimum of drama regarding the thermostat setting at night.
lizcommotion: Person with prosthetic legs doing pilates (aimeepilates)

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. tw: talkin' about medical tests )
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?

tw: medical procedure discussed in detail )

What does it feel like when it happens?

tw: more about medical procedures )

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.

lizcommotion: Person with prosthetic legs doing pilates (aimeepilates)
In case they are useful to some, here are some dysautonomia links. Dysautonomia is a thing I may have that causes dizziness and falling down and circulatory problems, as well as things like headaches, brain fog, peripheral neuropathy...and may be linked to things like fibromyalgia, CFS, etc.

I have another post about it that is more personal under an access lock, please PM if you would like to be granted access. I am making this post public as it seems it could be useful to the general dreamwidth community.

Note that I have not looked through all of these links in detail so I cannot vouch for their accuracy. Also note that some of them are very DOOM GLOOM EVERYTHING WILL BE TERRIBLE FOREVER while others are all EVERYTHING WILL BE WONDERFUL EVENTUALLY, so I don't know. Something in the middle probably? But don't take the doom and gloom to heart, is my advice.

Life With Ehlers-Danlos Syndrome - blog by someone who also has POTS (Postural Orthostatic Tachycardia Syndrome) and other invisible illnesses, note the POTS tag on the sidebar

- Yahoo group with teleconferences for a host of related syndromes, including Chronic Fatigue, Fibromyalgia, and Chronic Lyme as well as Orthostatic Intolerance and POTS

National Dysautonomia Research Foundation - Info about how the autonomic nervous system works for the layperson; also has a list of specialists

NIH Dysautonomia Page
- doom and gloom but has links to potential research trials and other sources

Disautonomia Information Net - Patient-run information site and forum

Dysautonomia Youth Network of America
- more sunshine and roses than the others; does have good info even if you are no longer a "youth"


lizcommotion: Lily and Chance squished in a cat pile-up on top of a cat tree (buff tabby, black cat with red collar) (Default)

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