MTRJ75

One of the key take aways from that health rising blog too is that they're finding that it's not the # of mast cells activated, but where they are being inflamed (near digestive nerves).

I have a ton of nausea. It's one of my more constant symptoms, though certainly not among the worst. However, I blame most of mine on Sjogren's (dryness) and allergies.

Well, she said it that if she tried hard enough with a TTT she could probably make me pass out and find something, but it wouldn't change her treatment for what she's already seen without it.

The newest Health Rising blog has some interesting stuff on IBS and MCAS. Will probably try to expand on that in a new post when I have more time. Some potentially large implications there: https://www.healthrising.org/blog/2021/11/13/mast-cell-activation-ibs-fibromyaglia-chronic-fatigue-syndrome/ Also, in Dr Pace's talk this year, she mentioned the ability to test for MCAS via biopsy during endoscopy now.

It seems to me that these tests are designed with the thought that people are equally symptomatic all the time when POTS/dysautonomia is a bag full of wavering symptoms. You don't have the same ones every day or even every hour. This is pat of the reason my cardiologist told me a tilt table would likely be a waste of my time and energy. Shouldn't the data in your records, noted by doctors on frequent occasions in the past when someone was more symptomatic far outweigh the random day and time they chose to test you when you might not be as much? Why don't they just test the things that should be more constant?

When you go to the doctor, do they perform the "poor man's" tilt test? BP/HR lying, sitting, standing? Maybe they can pick up something different upon standing? I have no idea what it could be, but of course that's probably what's so concerning about it. Our bodies have been through so much, they tend to freak out and exacerbate new symptoms. Hopefully this is a very temporary thing for you.

Something is termed not significant when it's happening to somebody else.

I believe you have to go through DI to get a link to the conference videos from them. They are on Vimeo somewhere though if that doesn't work.

Ugh, what a nasty few months for you. This probably goes out the window if we're dealing with damage rather than dysfunction, but I sometimes find that when my body is focused on dealing with something else, it almost "forgets" to be dysfunctional autonomically. It's beyond frustrating when you think you're well enough to do something only to pay a heavy price for it.

Watched Dr Pace's DI2021 presentation today. Always very informative and pertinent to this discussion. She's very up on the technological advances in GI diagnostics, though she also calls IBS a trashcan diagnosis. Anyway, worth a watch/listen if you have access.

The doctor didn't appear extremely concerned, but they let me visit for the entire weekend instead of just a few hours, although they refused to give me fluids until the second night when I got a nurse who was familiar with POTS.

I've had the same thing happen in the ER. Nothing came of it.

Just finished watching Dr. Raj's talk and ironically, I had recently watched his 2021 DI Conf. talk that prompted me to ask some too late exercise questions in the other thread. In fact, a lot of this talk and many of the slides were repetitive from the DI Conf talk, which is fine because they were very useful. Some of the new things though: - Towards the end, he touches on the beta blockers and even mentioned that "less is more", which is something that has been discussed recently in another thread where I couldn't remember where I'd seen that lower dose beta blockers were better for POTS. - He mentioned salt tablets and nausea (which he also mentioned in the other talk). I never connected the two before. Stopped taking my salt tablets first thing and the morning this week and less nausea. - POTS Plus - I'd never heard this term before and while in the beginning, standing tachycardia was among the worst of my symptoms, it's far from a solved issue now, but I would certainly consider other issues more debilitating. He mentioned MCAS, AI, neuropathy, etc... Is this something that's actually a real thing now? Do I go into my doctors now and say I have POTS Plus (and then explain to them what it is)?

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).

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?

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?

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.

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.

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).

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.

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.

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.

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.

Are these going to be collected to view somewhere?

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?