woah holy shit a bio?

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Joined 2 years ago
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Cake day: June 30th, 2023

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  • The sweat test was awful. You basically wear your underwear, lie down in what amounts to a glass oven, then they spread sand all over your and you sit still for an hour and bake. Then they take a picture at the end.

    And purple means sweat, yellow means no sweat. It shows what sweat glands activated by the autonomic nervous system. Then you have to shower it off and it takes forever.

    They were very professional about it though, it was a nurse, a doc, and technician. I guess they were doing multiple tests at the same time, but I never saw other people doing it. Which was a relief I didn’t really want to see other purple people


  • It does help me keep volume, definitely. I found ones called “vitassium”. They have 500mg of sodium, 100mg of potassium per pill. That seems to work ok with 3L, so it should help reduce your intake.

    It’s kind of weird to think about though. All my life I had to listen to my family having too high blood pressure so I got used to not eating salt.

    Well that backfired.


  • Well, bro, I got some bad news on that front.

    I’ve been to two of the best hospitals in the world (not on purpose, just coincidentally and they wanted to check it out in their specialty clinics) and went through some unpleasant testing (one is called a thermoregulation sweat test that they cover you in color changing sand), and that’s the exact same thing I have to do.

    I take 4 salt pills, drink 3 liters of water, Gatorade or Pedialyte and a beta blocker. I do cardio. The one thing I am starting to get better at now is lower body strength - my legs are pretty dinky and along with increased blood volume, bigger leg muscles can help ease the symptoms.

    The beta blocker thing I got unlucky with though, there’s a few of them that are better for pots but I can’t metabolize them (or maybe I rapidly metabolize them so they don’t work at all, I cant remember).


  • Does really hot weather seem to cause it?

    Do you seem to eat less salt than other people?

    Do you have persistently low blood pressure but a heart rate that is easy to spike?

    If you stretch just right will it happen?

    I don’t want to just say “go see a doctor” but having collapsed at very bad opportunities, it is not worth finding out until it’s too late that you have to make some lifestyle changes to function.


  • I want to point out that Orthostatic Hypotension is normal to some degree.

    If you experience it changing positions while sitting, or notice exercise and heat intolerance, talk to a doctor. In the short term drink enough fluids and get a bunch of sodium and potassium in you.

    Edit: Im going to step out here and say that I am personally familiar with a condition called Postural Orthostatic Tachycardia Syndrome. It’s somewhat uncommon, and has a lot of potential causes. COVID-19, specifically, can trigger it because of the way it attacks the nervous system. However, the symptoms of POTS are also the symptoms of a BUNCH of other much more serious conditions. It’s a diagnosis by ruling out other things. When they get to the step of testing for POTS it’s hilariously easy. They monitor your heart rate and blood pressure, stick you on a moving table, and tilt you.

    On the downside, POTS itself is incurable unless the underlying cause changes or improves. This happens in many people, I was unfortunate enough that they discovered I had unexplainable neuropathies. Either the nerves were damaged when I was young, or they didn’t grow correctly.

    The upside is that we can manage POTS symptoms. Avoid heat. Build lower body muscle, increase electrolyte intake, and drink a lot of non-caffinated and non-alcoholic liquids. I take salt pills, drink Pedialyte daily, and have a prescribed (and extremely cheap) medication. It still happens, but it’s manageable, and I won’t die from a head injury anymore.







  • I imagine the children with these things are emotionally disregulated in some way shape or form. A small group of children sometimes don’t learn to self soothe when they are very young, others in ASD struggle with it for a lifetime. Some with ADHD have a very difficult time when their medicine wears off and their emotions kick back in to overdrive.

    For all those groups I mentioned, the whole concept of this thing was almost brilliant. Something that they can go to knowing it will be able to help them guide through emotions while mom and dad are doing something necessary like cooking or fixing something outside, or in the bathroom.

    If you haven’t had to deal with a child that has emotional regulation problems, then it is hard to explain the difficulty that the failure of this device will make. It is true that they will adapt it, they always do, that’s how things work. The problem is that the emotional disregulation leads to broken things at home, aggressive behaviors with peers, getting kicked out of preschool and day care, etc.

    It truly is a nightmare scenario. The parents have to prepare for all of these things and a new way to help their child through the limited existing means.