westernmass

I should add that I agree with what others have said-- if I push too hard, I will regret it. There is a fine balance. Overdoing it results in bad fatigue and even worse muscle spasms/cramps that only muscle relaxers relieve.

I've worked really hard to build up strength through exercise. When POTS first hit me, I went from being very active, working out almost every day, walking several miles 3 times a week, doing yoga, etc. to being unable to do 10 mins on the recumbent bike without becoming symptomatic and being wrecked the rest of the day. I remember at my first cardiac stress test, the dr said to me "the only reason you are still functioning is because you were so fit when you got sick...every step you take is a step away from a wheelchair" and that really stuck with me. About 6 months post-diagnosis, I started an exercise plan, which was 10 mins per day recumbent bike. Each week I added 3 minutes, until I reached 45. Then I would do 40 minutes recumbent, 5 minutes upright, until I could do 45 minutes upright cardio. At this point, cardio is so boring! So I do 20-30 minutes a day (unless I'm hiking, in which case I will go much longer) and do some weights and yoga as well. I feel like I'm technically quite fit. Exercise has helped me be physically stronger, and has increased my endurance. It has helped with confidence and definitely is a fantastic stress reliever for me. Exercise has not helped with my blood pressure or heart rates, or symptoms overall, other than I can perhaps the help of being stronger. I am pretty "high functioning" for POTS, able to go to school full time (but not work as well) and I can walk around and all that. Compared to "normal" people, especially my fit yogi friends, I'm not even close though. I notice that since POTS, my balance and breathing is really off, whereas before that was something I liked about yoga, now I struggle with those parts. I think part of the benefit is also the empowering feeling of "doing something about pots". Similarly to eating really healthy, taking my herbal medicine and vitamins and getting acupuncture, I feel like it's part of my regimen (at this point I haven't found a medication I can tolerate).

I was really hopeful about Mestinon, and did a month trial this summer. It's a month I feel like I lose from my life, LOL! I had pretty severe side effects from it, and didn't see any improvements in anything. I've heard about people doing well on it so had high hopes. Good luck!! I did 15 mg twice a day and went up to 30mg twice a day before tapering back down and off it.

I just started the process. Imapumpkin- curious who you saw as I know we are in the same state. I know they do have several pots patients- mostly younger (teens) and mostly with eds or mito. They told me I don't jump out to them as having either, but they did a bunch of preliminary blood work. So far pretty much everything seems to be a dead end for me, so at the very least another possible cause to cross off the list? LOL, trying to look at the bright side.

I've tried several diets (vegan, dairy/gluten free) and then back to no plan. I started Chinese medical school last fall, and have since adopted a diet that combines those guidelines with what my gastroparesis demands. I eat a bland, most cooked diet. Grains, lots of cooked veggies, meat. Everything organic because why add pesticides, etc to the mix LOL. I find that anything raw KILLS my stomach. My skin really likes a diet high in healthy fats- olive oil, peanut butter, and I'm obsessed with coconut oil (both in diet and as a moisturizer). I find red meat, especially near my period, boosts me up a bit (it's considered a "blood builder" in Traditional Chinese Medicine) but it's not the easiest thing to digest so I limit it. I have found that both dairy and wheat (white) can bother me, so I minimize them as much as possible--but am not super strict about it.

I wear sports-grade compression socks. I have very minimal pooling, so for me they work fine. I would imagine if you have more severe pooling you may need something stronger? I've found them on zensah.com, but they are quite expensive so I will check out the links you posted!

When I get headaches that get much worse on standing (like pressure in my head) it's usually my blood pressure fluctuating like crazy. Make sure you are hydrated enough- are you good about that? Do you take salt? Can you monitor your BP? If you are concerned definitely check in with your doc though.

This is so interesting! Very exciting to potentially get some answers in the foreseeable future. Rich- thanks for your explanation I found it helpful. If anyone does have info on the larger study, please PM me the details

Heat heat heat! I'm a convert since starting Chinese medicine school. In their perspective, cold constricts, which would worsen circulation to the area and therefore worsen muscle pain or healing to an area. I know a lot of doctors and physical therapists say ice, or alternate ice and heat, but since switching to straight heat I feel some more relief.

I have nothing diagnosed- but am a terrible sleeper in general. I have, only a handful of times, woken up shaking and unable to move (drs said it's not a seizure because I was aware of the episode?). I do occasionally wake up from tachy or what feels like presyncope from changing positions (rolling over, etc). I am diagnosed with pots and dysautonomia, not ncs, but figured id chime in

I have noticed this as well. I'm working on strengthening my back in general, with the hope of improving posture and helping my horrible neck pain. I think (purely my thoughts!) that the slouching is a combo of the body's fatigue as well as an attempt to get everything closer to the heart and/or laying down to relieve the effort of dealing with BP and HR swings. Other than strengthening exercises, I've been incorporating some yoga poses and stretching to my daily routine. Also, fwiw--Back in the day, when I was an equestrian, some of the girls who had a naturally rounded posture bought and wore a "shoulders-back" which is sort of a figure 8 thing you wear over you shoulders which helps/forces your shoulders back.

Interesting. I have (general) low-normal BP when resting (and who knows when standing LOL). I use ginger in many forms, often daily, but haven't noticed adverse effects for me personally. Definitely helps my digestion. There are lots of foods and herbs that can play with BP, so it's good to be aware, especially if you have very low BP.

I have not had these symptoms-- have you checked in with your doctor? Is the rash causing pain?

Acupuncture! Find a licensed practitioner. I am a bit biased though feel free to PM me about it.

Ha! I had a hard time picking one from the list, and I'm sure there's so many others! This is a funny poll