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Everything posted by westernmass

  1. 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.
  2. 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).
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. 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.
  8. 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
  9. 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.
  10. 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
  11. 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.
  12. 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.
  13. I have not had these symptoms-- have you checked in with your doctor? Is the rash causing pain?
  14. Acupuncture! Find a licensed practitioner. I am a bit biased though feel free to PM me about it.
  15. 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
  16. They don't hurt, do yours? The ones in my groin haven't fluctuated at all, but the one in the back of my neck seems to be worse when my neck pain is worse? Maybe? LOL, that might be a reach...there's no definite triggers that I've noticed for the fluctuating size.
  17. Thank you for sharing your experience! I see a metabolic/geneticist in May. Wondering about EDS and/or mito. It's really interesting you mention lymph nodes! I have one in the back of my neck that swells and goes down and swells, and two in my groin that stay swollen. No one (pcp and neuro) seems concerned but it seems really strange to me.
  18. I have been having this badly for the past month or two. I don't think I used to, or at least last time I was monitoring BP/hr daily my numbers were better! It seems to generally go from approx 110/70 with hr of 60, stand up and it's 140/100 and hr 90, then a minute of standing it's at 120/97 and hr 110, and I would imagine continues to drop (I stop standing still at that point to keep from fainting!) Glad to see I'm not alone. Anyone know if hypertension (even just on standing) is a big concern? I used to have orthostatic hypotension so now being hyper...I'm confused! I can feel the fluctuations all day long!
  19. I also started on the recumbent bike. I started with 5 mins, 5 times a week and each week added 5 mins until I was doing 45 mins. I actually worked up to 45 mins on the treadmill and did my first 5k over the summer! Exercise was great for me, especially mentally to see yourself get stronger. I had a bit of a flare up this fall, and stopped exercising completely. I started back on the recumbent bike this past week- my goal is 20 mins 3x/week. The most important thing is not to overdo it. Start slower than you think you need and slowwwwly build up your strength. Good luck!
  20. Have you seen a GI? I don't have the dramatic postprandial rise in HR, but severe bloating after eating could be caused by SIBO, an overgrowth of bacteria in the small intestine...which can also be caused by gastroparesis, which to some extent (mild-severe) it seems that many of us with autonomic disfunction have. It also could be something totally different! So if you haven't checked in with a GI yet, I would definitely recommend it. Otherwise I've found sticking to several small meals a day to be helpful...can't say anything for ur HR jumping up though. Good luck!
  21. It was explained to me that there's vertigo (feels like room is spinning) which is different from dizziness (aka presyncope...that sort of black-outy feeling before fainting). For me I consider "brain fog" to be that general "out of it" feeling that is neither dizziness or vertigo (lol!). What testing have you had done? The hives/itching could be a lot of things, but have you looked into mcas/mcad? I know several members here have that as well. Are you taking salt and staying hydrated? Those definitely help (mildly). Are you on meds? Do you wear compression stockings?
  22. This may or may not be unwelcome advice, and to be honest I do NOT know much about trigger point injections...BUT, I am getting my Master's/Doctorate in Acupuncture and Oriental Medicine. Both of these practices ("dry needling" and the injections) are NOT considered safe. Who is giving you these treatments? Red and hot to the touch is NOT an appropriate reaction to needling...it sounds like infection or allergic reaction and I would see a doctor about that- especially if it's not getting better or causing discomfort. If you choose to get "trigger points" needled, please see a licensed acupuncturist (NCCAOM). Especially for us POTS/Dys patients whose systems are so delicate, a lot of those points can have adverse effects which a licensed acupuncturist would be aware of. A PT or whoever doing "dry needling" may have only taken a weekend course on needling- whereas a licensed acupuncturist has AT LEAST a Master's degree or doctorate and 3-6 years of graduate level schooling and clinical work. Sorry for the earful! I hope it's helpful and not too preachy. I'm sorry you are dealing with this reaction and hope you recover quickly!
  23. I had to leave my job last January, but am doing grad school full time since September. It's definitely tough! I don't have much energy to do anything else.
  24. I use the calf sleeves as well as socks from an athletic site. I have very minimal issues with blood pooling, and I do find the sleeves to be effective for me. I notice the difference in size of my veins when I wear them vs don't wear them. I have the athletic ones (not medical grade) so I can def see how if you have severe pooling, these wouldn't cut it.
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