#(( I need to at least attempt to unfuck my sleep schedule ))

[mghtfall]

I'm gonna try to get some sleep soon

so I might not post anything else for the night. But I should still be lingering around discord for a little bit.

[doberbutts]

Hi! Wondering if I can take you up on the offer in that dysautonomia post.

I’ve been feeling randomly more tired than it feels like I should, but I think it’s not general deconditioning? Showers can wipe me out for a few hours and a shower chair is helpful - but I can walk for miles and afaict even a 5 mile hike drained my mental energy before obvious physical exhaustion (noticeably worse executive function and sensory/emotional tolerance but only normal muscle fatigue). Medically, been trying to sort out high hgb/hct that isn’t going down that much with T dose, and also night sweats at least a few times a week, and also I can be lying down to nap with my heart rate over 100 and it only comes down slowly. Can’t freaking tell what’s ptsd triggers, what’s other stress/anxiety, what’s maybe autistic burnout/sensory management taking much more energy than I expect, what’s needing to eat more consistently, what might be sleep issues, what’s effects of hormone levels, or what might be something else. I’m waiting for a sleep study to try to rule out sleep issues. I would really appreciate any pointers if any of this sounds like it might point a particular direction or if other tests might be useful.

Sadly that could be a lot of things, and I definitely think a sleep study is a good way to start. Making sure to manage your food and water intake, fixing your sleep schedule, taking care to be kind to yourself during episodes, those are a good place to start. No, I'm not saying that that will completely fix your problems, but any doctor that knows about POTS that does end up diagnosing you [if you have it] will tell you to do these things anyway. This is why I have been slowly attempting to unfuck my life.

If all of these things don't seem to be helping and the sleep study reveals nothing, the next thing I'd do is buy a cheap blood pressure monitor and see if you can have an actual record of your heart rate and blood pressure before, during, and after these episodes if possible. Something that records the output, or take a photo of the readings so you can show them to your doctor. Personally being a child of diabetics I also recommend buying a cheap glucose test kit to see if your sugar levels are doing anything funky during these times as well. Try to keep a journal of time of day, what you were doing just prior, and the readings you're acquiring to see if someone can point out a pattern.

A really easy way to see if there's a cause for pushing for specific testing is to go from seated to standing at your usual pace. If you are an otherwise healthy person and your heart rate jumps more than 30 bpm there is a pretty good indication that something interesting is happening inside of you that shouldn't be. If you also notice a big spike or drop in your blood pressure when initially standing or after standing still for a long period, that's another clue.

If you unfuck these areas of your life AND are getting concerning readings with little to no improvement on symptoms, it's time to look deeper. Most cardiologists will do a 24hr holtor, an EKG, a tilt table test, and/or a stress test, though the tilt table test is the one that really tends to seal the deal. However with some of your symptoms, I would honestly not be surprised to hear your doctors wanting the sleep study and probably an EEG to rule out things like sleep disorders or epilepsy as there can be some overlap.

It does take the average patient 8 years for a diagnosis- it took me less the first time around because of my family history, but the second time around took more like a year and a half due to comorbidities and I literally almost died. A friend of mine got really jerked around by her doctors for close to 6 months before someone was willing to run a tilt table test and almost instantly diagnosed her the second she fainted during the test. Another friend was told she was being a ridiculous germaphobe while her doctor ordered the test despite having a known dx of something commonly associated with POTS and again she was still diagnosed almost instantly during her tilt table. A third friend keeps getting 'hmm maybe' 'no' 'totally healthyl 'yes?' 'okay well that's weird' when he asks for a tilt table and they refused to give it to him despite picking up arrhythmias during his holtor and EKG- it's been a year and he's still arguing with the doctors to get a tilt table. Unfortunately many doctors simply aren't trained in autonomic disorders or in autoimmune disorders, and POTS is both. It can be very difficult to find someone willing to listen to you.

If you do all of these things and land on 🤷‍♂️, a lot of times it's things like fibro or MS, and the knowledge gained from these tests will help find a diagnosis of whatever-it-is affecting you.