bella27

Hi all - can anyone recommend a good cardiologist in the DC area who specializes in POTS? I'd also love a rec for a naturopath, as I haven't had much success with traditional medications. Thanks!

Hi guys! I'm looking for new work and am hoping to find a remote position. My chronic insomnia (caused by POTS, of course) makes it hard to do the 9-5 thing. Can anyone recommend any good companies/organizations that hire for full time remote jobs? I'm looking for editorial and communications positions preferably at a nonprofit or publishing house. It seems like all the remote jobs I'm finding are either for part time, project-based or for tech roles. : / I figure there must be a lot of remote workers on this site, so I figured I'd ask. Thanks so much! R

Katy - Thanks for your message. I have the type of tongue posture where the tongue rests on the floor of the lower jaw but it used to protrude against my teeth. I'm surprised that holding the tongue on the roof of the mouth is a symptom of EDS, as that is the ideal resting position for the tongue.

I was wondering how many others out there are mouth breathers? I've been a mouth breather and tongue thruster all my life and have been reading about how mouth breathing can cause dizziness and brain fog. Now, I'm curious if there's a link between my mouth breathing and POTS. Would love to hear others' thoughts. I'm going to start myofunctional therapy soon to help me learn to nasal breathe so will let you know if this relieves any of my POTS symptoms.

Can anyone recommend a good doctor in Boston for POTS? Thanks! Rachel

Thanks so much.

Thank you! And I hope you start feeling better soon.

I was wondering if anyone has been able to find a full-time salaried job where you can work from home? I'm a writer (advertising, marketing, journalism) and would love to work from home b/c of POTS. I realize I can freelance write, but it doesn't pay the bills nor does it provide health insurance. Its weird how the government seems to only support people with disabilities by paying them disability if they can't work. I think they should instead provide some kind of program for people who are still lucid enough to work but need to do it from home. They should encourage companies to offer opportunities for such people to work remotely. I've found such work-from-home positions to be very very rare. And most seem rather sketchy. If anyone knows of any legit companies who have a lot of remote positions, or knows of a program that helps people in my situation, please let me know!

Thanks Dixie. Maybe I need more time to adjust. Its funny because I noticed that it helped with some of my brain fog issues (I was able to speak more clearly and concisely and it helped with verbal memory) but seemed to hurt with other areas - my brain seemed foggy when reading, for example. This disorder is endlessly confusing... Rachel

I am sure someone has written about this before but I can't find it anywhere. So apologies for the repeat... I am so confused as to why propping up front posts of your bed a few inches helps POTS symptoms. My biggest symptom by far is brain fog and that improves when I lie down and worsens when I stand for long periods. Slanting my bed upwards leans my body in a more "standing" position so you would think it would worsen my symptoms the way standing does. All this being said, I tilted my bed last night and do feel a bit better. I just would really like to understand why. Thanks in advance for your help! Rachel

Thanks everyone for your imput! I just started taking Jolessa and am nervous about the side effects. Has anyone taken this?

Whenever I have my period, my POTS spirals out of control. I am dizzy and tired and my memory and word retrieval problems become even more intense than they already are. I would like to take birth control to stop or at least lessen the effect of my periods but was wondering if birth control effects POTS in any other ways (positively or negatively)? Does it have any effect on blood volume? And do its horomones have any effects on POTS besides helping to regulate the menstrual cycle? Has anyone had good luck with a particular brand? Obviously, I would like one that does not make me emotional or gain weight... Thanks so much for your feedback!! R

That is such a good idea! I personally thought I had brain damage before I was diagnosed with POTs because I abruptly went from having an amazingly good memory to barely having a memory at all. I bet there are a lot of cases like this.

Hey all, I'm a freelance writer for various magazines and I've had POTS for 10 years. I would love to pitch a story on POTS to a newspaper or magazine to raise awareness about this horrendous disorder. I am having trouble coming up with an interesting/commercial angle though. I don't want the article to just be like, "This is what POTS is." I am hoping to do a kind of think piece that focuses on brain fog (which I think is a pretty unique symptom that non-POTs people find fascinating). Let me know if you have any ideas on how I can discuss POTs and brain fog in an interesting meditative way. Many Thanks, R

Thanks for responding. Please let me know if you ever decide to try it with the piperine.