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MTRJ75

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  1. I know the weather thing has been discussed here and agree with your assessment, but was wondering if the doctors would have had anything new or different to add. There has been no combination of things successful in controlling my allergies this year. In one respect, it actually helps with the Sjogren's dryness, but it's torture in all others (I mean neurologically, not the sniffles of course).
  2. Another one. Brain is working overtime today. This one about weather and why does it affect us so much? Sure, 90 degrees or 20 degrees at the extremes make sense, but my worst months (and I've heard the same from others) overall have been October/November. Beautiful fall weather. Why? Is it the actual weather or the changes in weather patterns that affect us the most? Also, people always recommend sunlight as a remedy to many things, but sunlight now destroys my body. Why is that?
  3. Got another one if it's not too late. This one is a three parter about exercise. 1) I keep hearing exercise, exercise, exercise as I'm listening to the 2021 DI Conference. What about someone who had been exercising at a moderate rate (not often over-doing it) for most of their life until they couldn't due to this condition? Why didn't the previous lifestyle/exercise regimen keep this from happening and why should we think the result of renewing an exercise program is not going to end in the same failure now? (Again, I'm talking about moderate exercisers, as I understand over-exerting the body consistently can also cause a problem). 2) Assuming there is a reasonable answer to Q1, where can we find an easy to follow exercise regimen to follow. I'm talking about something with a description of exercises AND a schedule, so that we don't over-push. I have previously downloaded the CHOP program, but had no idea what to do when I was finished reading and ready to start. 3) I also heard on a talk last year by an physical therapist with POTS experience that those with MCAS issues will generally fail at exercise programs until that's under control. I'm really not sure what my question is here, but this is not an easy thing to get under control. Can someone maybe expand upon this?
  4. This might be kinda silly, but most times whenever my oximeter acts whacky it's because the battery needed to be changed? EDIT: Also, do you have a Kardia? I've often used both at the same time whenever I suspect a disturbance. This might be much more effective in recording one. I believe they cost about $100.
  5. I had an echo once that said I had pulmonary hypertension and an enlarged heart. Went through a series of tests, including catherization and cardiac MRI, very invasive and uncomfortable to finally realize it was probably nothing to worry about. Pretty scary potential diagnosis though. Ever since, my cardiologist says that echos don't come out very clearly for me for some reason. We do a cardiac MRI once every 5 years and she's otherwise unconcerned.
  6. There is literature out there to that effect, though I can't remember if it was ever posted here or not. You may want to google. That said, the dosage you're on is still very small. less than a standard single dose. If you don't have blood pressure issues (mostly high), you can also consider looking into Ivabradine (though I hear it's difficult to get covered).
  7. I have noticed that the heating/sweating effect has been a bit better the last few days as the weather has cooled, but it's also partially about somehow calming your body so that it isn't as amped up and producing heat. It was 60 degrees in the house yesterday w/o heat and I was fine (temperature wise) for most of it, but as soon as I took a phone call and had to lean forward to take a note, heavy sweating again.
  8. I heard this yesterday. Not shocking, but really validating and also goes back to my question in the other thread about informing our doctors without overwhelming them. You walk into any doctor's office (or ER) with 32 symptoms and they're assuming it must be anxiety.
  9. What's the dosage? I'm on 10 mg of PPL once a day early (mostly for high blood pressure), but then 2.5 mg of Ivabradine in the evening. Feel like my heart rate has been better controlled with Ivabradine. I think there's also some literature on lower doses of beta blockers being more beneficial than higher doses in POTS.
  10. The weird thing (or maybe not so weird) is it doesn't happen as often in bed or lying down anymore. But I guess lying down is when a lot of us are least symptomatic. And the heating sensations are more in my core, not so much in my head, so I've never actually recorded temperatures that increase too much even if my insides feel like a furnace on high. As far as the meds go, I feel like they keep trying to add meds to deal with the side effects of the last one, but some of them do seem necessary, unfortunately.
  11. Are these going to be collected to view somewhere?
  12. Let's preface by saying I certainly realize October is generally recognized as a part of the year with heightened symptoms for a lot of POTS/Dysautonomia patients and I also had my first real flares 3 Octobers ago and while last October was quite a bit better, mid-to-late-fall is still my worst time of the year. However, it was just last week where I would have said I was perfectly at my baseline of not feeling like I could do anything, but not feeling like I needed emergency medical treatment either. And then my work schedule lightened up at the end of last week. So much so, that I thought I would switch the alarm off and get some extra sleep this week. The result is the same morning burning, screaming muscles I usually wake up with and then after I get up, medicate, take out and feed the dog, I'll sit back down for the most agonizing part 20-30 minutes of my day, which will generally let up some after that. First off, that's not really happening this week. It somehow seems the more rest I get, the more exhausted and achy my body is all day. I don't mean minor aches either. I mean I have trouble even using muscles all over my body for anything or even getting up off the couch. Even sitting up for long periods. My body has been in such a state that a couple of years ago, I'd probably have been in the ER this week, if my mental capacity hadn't improved enough to calm my body as much as possible. Is this a weather change thing or is somehow getting more sleep (8-9 hours instead of 6.5-7.5 normally) actually worse for me? Can that even be a thing. My entire body has been in a high state of exhaustion and anxiety, deep aches and low blood flow all week. I'm walking around like I'm dealing with a drunken concussion if I am able to get up with a tightness/burning/tingling up the back of my neck through my head all day (which, of course, I feel all through the coat hanger area as well). Then there's the sweating, which seems to be getting worse and worse by the week for a while now. Anything...ANYTHING that makes me move or even have to think too much, now drenches me in sweat. I'm changing shirts several times a day now and have even ruined a couple of good t-shirts. Phone calls are getting ridiculous now and it's like my body has an inner sense of who I'm talking too. Friendly phone calls might be a light sweat, but if it's something to do with medical issues or some kind of bill, drenching sweats right away, much worse if I have to lean forward to look something up or write something down. I've even begun putting people on speaker because the phone has begun slipping out of my hand. Then, of course, if I can finally get my body calmed down from that sweating, heated up, fight or flight, need to empty kind of response, I'll immediately flip over to the opposite extreme...freezing with a constant need to urinate. Frequently, I'll flip back and forth several times per day. I'm already on so many medications and thought that after starting LDN a few months back that my baseline might have even been improving in some ways. What am I lacking/missing here?
  13. I've come to this thread several times to attempt to find the words to ask a useful question in a coherent way, but always end up deleting it. Maybe someone can figure out how to reword it if it's not clear enough, but some (a lot?) of us have doctors (cardiologists/neurologists) who want to help, but aren't experts in this particular specific condition(s) and what they do know may sometimes be outdated. So... 1) What's the best way to keep up with the most recent therapies/treatments and tests in the field? 2) More importantly, what's the best way to help educate our well intentioned doctors without over-whelming them?
  14. Absolutely. Especially afterward. Workouts that I'd been doing for a long time were destroying me, even after cutting them in half and then in thirds. I would start shaking/trembling and couldn't recover from simpler and simpler things (or at least I though they were). It was pretty terrifying and involved several ER trips in the beginning when I couldn't figure out what was going on.
  15. I have a close friend who has this and ironically, we always remark how we don't have nearly the same symptoms. Anyway, his wife does some volunteer work for some foundation and was contacted by a Dr. Sherene Shalhub out of Seattle, who happens to be a vascular EDS specialist (I think), who volunteered to take on his case. I hope this is helpful.
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