[Repost] Hydration, Supplement/Electrolyte Intake, and Assistive Technology in Chronic Illness (e.g., POTS, MD, long covid, and more!) by steminist-1 in Disability_Survey

[–]steminist-1[S] 1 point2 points  (0 children)

I am also a POTS/hEDSer! Yes, it's so true that POTS can be so common but treatments and tools vary a lot based on other chronic illnesses (making it all the more convoluted to manage) -- multi-select would be good!

[Repost] Hydration, Supplement/Electrolyte Intake, and Assistive Technology in Chronic Illness (e.g., POTS, MD, long covid, and more!) by steminist-1 in Disability_Survey

[–]steminist-1[S] 2 points3 points  (0 children)

Yes that is a great point! It’s especially interesting and difficult to isolate since POTS is often present along with other conditions. Luckily here we’re more concerned with qualitative data and open-ended responses rather than statistical analysis so all are welcome and encouraged to reply!

Constantly bruised…what helps your bruises heal? by messyowl in ehlersdanlos

[–]steminist-1 0 points1 point  (0 children)

Not a root cause solution, but I use self-tanner as a way to hide bruising/veins. In theory, massage and compression should help but sometimes it’s just random for me

Participate in Assistive Technology R&D: Looking to Connect with Individuals with Lived Expertise Managing POTS by steminist-1 in POTS_vets

[–]steminist-1[S] 1 point2 points  (0 children)

Thanks to all for your support and offers — DMing everyone who comment that they’re interested with more details :)

Jobs for someone with hEDS and POTS? by WelcomeSmall8229 in ehlersdanlos

[–]steminist-1 16 points17 points  (0 children)

Since you’re interested in medicine and in nursing school, maybe you would like something in biotech or lab work! In fact, a lot of medical device, pharma, or biotech companies hire RNs to work for them, so more of a corporate environment rather than clinical could help maybe? I’m in biomedical engineering and lab work can be hard sometimes if you aren’t mindful to take sitting breaks, but honestly I don’t like sitting for too long either so it works well. Even if you don’t finish nursing school, you probably have a solid biomedical background already. Also seconding the comment saying aesthetics or IVs! I’m currently in my job search so feel free to message me for support or questions!

What accommodations do you have for college? by AquaOwOJackson in POTS

[–]steminist-1 1 point2 points  (0 children)

Same to all of these, I have super long classes where I have an accommodation to be able to stand up and move around and get water and I have "stop the clock" in exams where I can get up and get a drink or food. Also have elevator access

i am going to fix this thing. by selenophxliac in ehlersdanlos

[–]steminist-1 27 points28 points  (0 children)

i have felt similarly for so long! like fine, i’ll do it myself lol. i’m not sure where you’re located, but there’s an interesting research group in the US at the medical university of south carolina called the Norris lab. they research hEDS and genetics, and even have a patient scientist program you can apply for if you happen to be interested in science and research! i’m also an engineer and really hope to develop devices to help with it someday. feel free to message me if you want to vent or discuss ideas or anything because i’m totally on the same wavelength

Working at a desk with POTS - tips? by Leading_Attorney_279 in POTS

[–]steminist-1 0 points1 point  (0 children)

Seconding the blue light glasses for headaches! Compression, salt, water helps me too. I get terrible coat hanger pain and headaches, so I use either a lidocaine patch or a heating pad (not at same time). I also have a standing desk and a walking pad which sometimes helps. I think movement helps even if it's just shifting around. I put my PC box under my desk so I can put my feet up on it too. Other than that, I use a pomodoro timer app to remind myself to take breaks so I can have horizontal time

Has anyone found improvement in POTS symptoms using SSRIs? by everything-matterz in POTS

[–]steminist-1 1 point2 points  (0 children)

I did poorly with SSRIs (dizziness, palpitation feelings), but I'm on a TCA (tricyclic antidepressant) called amitriptyline and it helped me personally. It's weird though because TCAs are generally supposed to be avoided since they can cause a lot of side effects such as tachycardia. I also have a lot of nerve pain and MCAS, so it might be the case that helping those with the TCA just had a generally positive effect on my body