MikeO

Figured out my Docs understand being short of breath and the generalized term fatigue. My endo gets the term pumping like molasses but that's because he has diabetes as well. we often gauge how i am feeling to how well i can go up and down the basement stairs. bad day i will be SOB quickly and very nauseous .

https://pubmed.ncbi.nlm.nih.gov/31753129/

My clinic said they don't care about the OH subtypes as knowing won't change the treatment. My argument has always been knowing what portion of the ANS is not working well is telling for other issues that most of us experience.

well @Jyotipharmacy called today and wanted to know if i was still taking pyridostigmine even tho i have a active prescription. i just hope this drug is not going to the wayside. did see there is a newer myasthenia gravis drug coming out in the market.

be honest no. Dr. Blitshteyn has already noted that side effects from SSRI can cause symptoms. while a SSRI maybe a lifeline for some folks if is also a stressor for others.

i can't diagnose you but i am pretty sure that the criteria for hyperandrogenic POTS is a increase in systolic BP >10, substantial increase in HR (tachycardia) or norepinephrine levels > than 600 pg/ml upon standing. Grubb’s 2011 study described hyperadrenergic POTS as having an increase in systolic blood pressure of ≥ 10 mm Hg during a tilt table test with rapid heart beat (tachycardia) or serum norepinephnrine levels that were greater than 600 pg/mL upon standing. (The mean standing norepinephrine levels in Grubb’s hyperadrenergic study were 828 ± 200 pg/mL; normal range: 520 pg/mL.)

Good job! on advocating for yourself but Sorry to hear that your test results were positive. hopefully lifestyle changes will make a difference for you.

best i can tell you i do present at times then not other times. I don't have POTS but the outcome is the same.

@MaineDougTotally get the hot flashes...been there Lol. Hopefully the new Rheumy provider can help, have my fingers crossed for you. My faint clinic tried to dump me about a year or so ago and told me to go to the Mayo clinic (not going to happen) and you are right did not feel good. Keep up with the exercise!

Articles are interesting, thanks for sharing. Good Luck with your upcoming procedure.

@Sarah Teethis is a start up concept. so worth following. i do hope it pans out.

@Sushimore chatter on the STAT facebook page. Daniel Ewok Lee This is helpful; thanks! Customizable smart phone alerts for each data point you are tracking (HR, BPT, and cerebral blood flow trend) would significantly broaden the utility of the device. Some example use cases: for OH patients, a decreasing BPT will be critical information, whereas for a user with hyperadrenergic POTS, being able to get notifications of an increasing BPT will be most helpful. For other POTS patients, getting an alert when HR crosses a user-defined threshold will be invaluable to preventing a syncope episode. Other POTS patients could use the device to help with energy pacing: setting an alert for when HR has been elevated above x for y amount of time. As for the cerebral blood flow trend: this is the data point I'm most excited about, and I can already imagine several applications in my own life. The aspects of POTS and OI that are most life-limiting differs so much from patient to patient--and the lifestyle hacks we've all come up with to learn to live with these conditions are often so idiosyncratic--that I can see this device being most broadly useful insofar as it allows us to customize those notifications.

last year my eye doc did mention age related cataracts but mild. i have had relatives go thru the surgery and was fine with it. can't say if this is a ANS issue.

well i did get a response from stat. It was honest. We believe STAT should capture orthostatic changes in BP Trend in people with nOH. Preliminary data does show STAT capturing BPT drops in tilt patients who are experiencing hypotensive episodes, as compared to more obtrusive clinical Continuous BP monitors (working on data analysis for a publication now). But I looked through the diagnoses of the participants in the study I'm analyzing now, and nobody had a nOH diagnosis. Based on how our BPT algorithm works, I don't see why STAT would not detect BPT changes in those with nOH, but until we have the data verifying that our BPT algo works on nOH patients, I'm hesitant to make a definitive statement. Totally get it on your desire for the alerting functionality. I initially designed/envisioned STAT being used for this as the primary feature/functionality - my dad has recurrent syncope without a prodrome so he doesn't see the faint coming. This was also what we had some promising data on in our Johns Hopkins / JACC study. However, for a few reasons we are de-prioritizing the real-time syncope alert for later. It's an extremely valuable feature for sure for some people, but with our limited engineering resources and the difficulty of making/getting approval for a reliable real-time alerting system, we are first prioritizing our efforts toward ensuring our Up Score and Flow Score work reliably across people, as well as some of the retrospective analytical tools to help people better understand how lifestyle choices are affecting their metrics. Creating a function for real-time alerting is a lot more of a technical/regulatory challenge that we will get to, but will likely not be ready in STAT's initial release. We may however provide a smartphone "notification" (not "alert" because that's a loaded regulated word) that we could send if we're seeing your BPT is abnormally low at some point in the day that might be useful to know before you stand up, but it may not be responsive enough in our initial low-power bluetooth behavior to be useful in-the-moment during a specific stand event. In addition, in the initial app, you will be able to see BPT trends over the course of the day that might prove useful to helping you understand your BPT patterns over the course of the day to help empower more preemptive planning. Lots more learning to do, but we're on it! There's a lot of people with nOH so we really should specifically seek out getting some nOH people into our next test cohort. Please sign up when we open up our next testing opportunity!!

i had a conversation with a Gal on the STAT facebook page she tested positive. short blurb from her "Autoimmune Autonomic Ganglionopathy (AAG), a rare form of Dysautonomia" she said that hypotension and OI are symptoms of this.

This is plausible as well. since i have been taking B12 and D3 it has helped. Have you been tested for PVD?

here i am out. devise does not meet my expectations. I already know what affects me fluid and meal wise. Technically, STAT doesn't measure absolute Blood Pressure, but instead measures a correlate to Blood Pressure that we're calling "Blood Pressure Trend." Here's some words from the website about our Blood Pressure Trend metric: "STAT’s BP Trend algorithm does not output mmHg, but instead provides a 0-20 Trend score to help understand your intraday BP variability. It is not intended for diagnostic use and intentionally cannot be compared against diagnostic criteria such as the 130/80 mmHg hypertension threshold." STAT's BPT algorithm is not so focused on being diagnostically useful for the ways BP is currently used in medicine, but is more intended to try to help people understand the wild intraday swings that people with Dysautonomia often experience. e.g. my BPT is lower in the afternoon after a carb heavy meal.

Well vision changes is just a symptom of what? there are a number of issues that can contribute to this. I can tell you that BG variances do contribute as the lens of the eye changes and is well noted. BP's also contribute and is well noted as well. I also have Anisocoria so is this a issue as well? I would love to equate this to dysautonomia but my feeling there are other factors that come into play.

@MaineDougsorry to hear about your RA. I know exactly what you're talking about seeming that we get a never ending stream of issues. I am pretty confident the GI doc will find something just not sure what right now. out of all the things i have done to improve my other symptoms my GI still gives me issues. Glad you are starting a exercise program. you will benefit trust me. may not seem like it at first but over time you should see a noticeable benefit.

@Macho319be careful of the usual it's dysautonomia and you just have to live with it. being deconditioned has its pitfalls that's why i suggested exercise it is affective. preload failure is testable IMO. POTS is very distinct symptoms. can't even equiate how this relates to a burning sensation.. Best of luck

i have had or still get some of what you are describing but never equated as heart failure as much as vascular issues and now diabetes which makes sense for me. I can tell you when i have had some pumping issues with my heart being short of breath was on top of the list. getting more exercise has helped me quite a bit.

i do experience vision changes. my issue may not be the same as yours but on a good day it is good bad day my vision is blurry and even in good light it seems dim.

Thank you. You are so kind. Mike

Docs Notes below. That's all i have for now. all i ever wanted was plain old orthostatic hypotension. now one more item to potentially to deal with. Plan: The patient was alerted that his laboratory studies confirm a diagnosis of diabetes mellitus; based on the results of the glucose tolerance test as well as his glucose pattern noted in his reported glucose self-monitoring. Laboratory studies were ordered to screen for latent autoimmune diabetes of the adult; including GAD antibody, islet cell antibody and insulin autoantibody. The patient was advised regarding the need for evaluation by gastroenterology as he reports symptoms highly suggestive of malabsorption; raising suspicion for chronic pancreatitis; which could also predispose him for insulin deficiency. Further recommendations; pending review of the results. He will tentatively return for follow-up in 4 months. Meanwhile, he was advised to report his glucose readings as needed for review and further recommendations regarding management of diabetes mellitus.

Well beta testing is not slated till 1st qtr of next year with a larger test going into 2nd qtr. kinda telling that the product won't be out on the market for a while yet.