Jyoti

@Sea otter--I am going to leave you an answer here so if it is ever of value to anyone else it will be visible. I was tested for: AChR binding Abs, AChR blocking Abs, and AChR modulating Abs. Looking at the results again, I am interested to see that my blocking antibodies were on the border of borderline. Yes, they came in negative (0-25) at 23. From what I have read, the blocking and binding are often both present together. My binding look very low normal, so ....? Yours were measured on a different scale (US/Europe) but you were thinking that perhaps there was some significance beyond the usual brush-off? Also, I find it of interest that the only med which has worked for me (and I have tried a good handful) is Mestinon, a cholinesterase inhibitor--it stops the acetylcholine from breaking down too quickly. Or that is my lay understanding of it. Which would kind of make sense (???) if I have (some, just enough to qualify as 'positive): Blocking antibodies may sit on the receptors, preventing acetylcholine from binding. I do not have a biochemically adept mind, but that sounds to me like they would prevent the acetylcholine from doing its job. Do you know if you were tested for each of the three separately? Check this out: https://www.testing.com/tests/acetylcholine-receptor-achr-antibody/ I just want to add that I have seen numerous situations where blood tests looked ok--in the normal range--and yet were not normal for me. (For instance, the normal range for potassium tends to be from 3.5-5.3 and I get symptoms of low potassium when my blood levels drop to 4.2.) If '1' is at all borderline in terms of range, I would see if there is a way to investigate further.

@Caterpilly--please update us as you gather more information. All good wishes that it helps. A lot! And @MTRJ75--let us know if you get the Pulsetto and whether you get any joy of it. Also....hoping it does something great for you.

Celebrating with you @MaineDoug So nice when the doors open. And rare enough to rejoice in.

Looks great!

It is of absolutely no consolation to us/the sick, but I know a bunch of doctors (none of them at all knowledgeable about our stuff) personally and all I hear is how broken the system is. FACT! We, your patients, have noticed this phenomenon as well. But seriously, they are leaving medicine in shocking numbers, presumably because they can't do the work they trained to do--10 minutes per patient with six of those on the computer making the necessary notes. To know that you had already had a particular test would require that they have the time to look over your chart (with coordination between other specialists) and see that you had that same test two months ago and the results were either normal or not. I also know a few surgeons and they are in crisis because so many of them are committing suicide. Which like I said, is not really a consolation. We'd like happy doctors who have the time to do what they yearn to do (I am giving them the benefit of the doubt here) and do it well on our behalf. But I think we are kind of the tip of the spear here, encountering the disarray and dissolution of the system. Since we have a multisystemic dysfunction, we need more specialists than most people. My sister, for instance, has an array of sort of run of the mill diseases of aging. All of them potentially quite serious, but all handled pretty nicely by a PCP. I go to the PCP and she is good enough to listen while I explain to her what is going on, and then she asks if there is anything she can do. She has NO idea. (Giving her lots of credit for listening and being nice, but....) So anyway, @MaineDoug, I am so glad you have such a great endocrinologist. A real human being who cares for his patients, it sounds like. It is a big deal, especially when so many of them sound so clueless. I hope the hematologist is of an equal caliber to the endo!

I know what you mean, @little_blue_jay. I have a love/hate relationship with my smartwatch. As long as I can heed its warnings, it is good. It can get me down and resting if my numbers are high and that is a good thing. I hate to see those high numbers, but I like being able to use them to guide my actions. On the other hand, when I am in the middle of something I can't control (unable to stop and lie down, e.g.) I have learned to ignore the watch till I am horizontal. I know--it is going to show me stuff that I don't want to see, can't act upon and there is absolutely no reason to know what is going on when I am stuck in traffic, tending to a kid in distress, etc. It just freaks me out and that doesn't help at all. I take @MomtoGiuliana's point as well. I have found that my watch (I now have a cheap Garmin with a Body Battery feature, but I used to have an Apple Watch) is an approximator. It tells me if things are trending up or down, it tells me when things are waaaay out of whack. But I try not to give too much weight to the specific numbers. I know my 'range' and what matters is noting when I am straying beyond it. And once in a while, when I am in a flare or a crash, I take it off and leave it off for a day or so. I guess we all have to figure out how much it helps vs how much anxiety it can cause.

Fingers crossed!

It is sometimes hard to swim against a tide.....when the world all around says: eat lettuce to be healthy!!!! some part of the brain picks that up, even when it is clear that such is not the case for you personally. I have a notion that qigong is 'good for me' which resurfaces intermittently and it somehow eclipses all my experience! How very silly. Well...the big bruise on my hand may be enough to help me remember; kind of like your sticky note but on my body!

That is so interesting @Sarah Tee. Awful, but interesting. So doing Tai Chi actually gave you a glimpse of what was brewing, exacerbated things in a way that offered a preview. Bummer! I have noticed that I tend to return to qigong every few months, convinced that it will be good for me this time. And time and time again, I get the same message. One day I will stop making the same mistake. I think that I like it intellectually, but my body just doesn't. Recently I have been doing a highly shortened routine--just a few minutes a day--and feeling proud of myself, but at the same time, noticing that my symptoms are on the rise. What? Again. And then yesterday, I was doing the 'knocking on the doors of life' where you swing your arms around like a twirling skirt and lightly bang on the kidneys and I was getting into it, my arms swinging with abandon, when one of my hands bashed into a piece of furniture. I now have a huge bruise on my hand, so ..... maybe I will receive the message this time? And...as @yogini said--it is good to find what works for you. Which isn't always easy to find. But if you do, stick to it!

For anyone who doesn't get this by email, instant cred for STAT? Welcoming Dr. Satish Raj to STAT's Scientific Advisory Board! Dr. Satish Raj has joined as a STAT Scientific Advisor! Satish R Raj, MD, MSCI is a Cardiologist and founded the Calgary Autonomic Investigation & Management Clinic at University of Calgary. Previously, he spent 12 years at the Vanderbilt Autonomic Dysfunction Center in Nashville, TN, and was a past President of the American Autonomic Society. He is focused on understanding and treating POTS, VVS, and OH. Now, Dr. Raj is excited about using STAT to ensure treatment of autonomic disorders goes beyond just heart rate and blood pressure, to prioritize blood flow to the head!

That totally stinks @Sea otter. It is an awful awful feeling (when you are already feeling awful) to go to the ER, to need help, and to be treated like that. I am thinking back not so fondly on an ER trip where I was in a terrific flare and being greeted with the discreetly rolling eyes. A nurse taking off the leads for the EKG and saying smugly--now there is a pretty little EKG. Malingering again! In any case, I concur with @Sarah Tee. If you can get a letter from the doctor who advised you seek emergency treatment under these circumstances outlining what to check and how to treat, that would help. I just got a letter from my cardiologist suggesting saline when I go to the ER, so I don't have to ask or fight. I hope you can get such a letter. What they can do is not all that great, but you should be able to get it all the same!

Thanks @Sarah Tee! Interesting stuff, well worth the read for me.

Thanks @MikeO. And best to you. I am inspired by your determination! Sarah's as well.

@Sarah Tee--the opposite. In general, when I am upright, my diastolic (bottom number) holds steady or rises a small amount. The systolic (top number) drops a lot. The other day after standing for five minutes, my bp was 101/90. So narrow pulse pressure. I am used to that, but not to this new development which finds me with both numbers elevated when standing.

Thanks to all for your thoughts and experiences. It is always so helpful to hear from others, particularly as our symptoms are so heterogeneous and so few doctors have the slightest clue. @MattyT--I appreciate your specificity and the story of your getting a diagnosis of hyper-adrenergic POTS. I can relate to the way you went in with a plan to share your symptoms with an end in mind. I have done that a few times too--that is how I got my diagnoses of ME/CFS, CCI and AAI and as well, how I convinced my doctors to take the steps that led to a TTT. My first TTT was halted when my BP dropped to 43/32. This has been my pattern for about a decade. My BP drops rather dramatically upon standing and keeps going down if I don't do something to stop it. Simultaneously, my HR goes up 40-70 bpm. My dysautonomia specialist does the testing you describe getting every four months. And for a few years, the results have been pretty consistent. But lately....the diastolic may rise and stay high even as the systolic drops. And most recently, BP goes up at random times, stays up, along with HR. It is a big change and I am confused! I guess I will have to keep tracking. Totally with you @MikeO. Honestly, I have gotten nothing out of these suggestions. I like them--in theory. Would much rather take a non-pharmacological approach, but ... only if it makes a difference! That stinks. I don't know what is possible for you there, but I got these tests done at Labcorp. My dysautonomia doc ordered them and while it was a production--with me coaching the lab tech all the way through--it did get done correctly in the end. I was a little surprised, since it looked like it was going to be too much for them, but together, we pulled it off. I found it to be one of the helpful tests since it was noticeably abnormal, and the difference between supine and upright confirmed some of my felt experience. Part of the puzzle. Good thing we are so curious, because most of our doctors--not so much! Like my hypokalemia issue--my bp can go through the roof and the treatment is simple--potassium. But unless I tell them that in the ER, they start looking for cardiac problems. Which I don't mind having checked out once the IV is in my arm! I think we are at a pivotal place in the breakdown of silo-ed medicine, where everyone specializes in one system or set of body parts and has no earthly idea what is going on in the others. Our multi-systemic failures are outside normal practice these days and it falls on us to connect the dots. Interestingly, I took fexofenadine this morning in the midst of an 'episode' after not taking it for some months and I think it was instrumental in calming things down. Thanks for the confirmation. I mostly tend to agree! Which is why I have accepted the stance that says--typing your POTS is not important; we want to treat the symptoms. But...I am feeling now like -- something new is afoot, and if the framework includes three sub-types, do they have any relevance to these new and unwelcome developments? But it is still a good thing to keep in mind.

Maybe this is self-evident and I am missing obvious information, but given my current state, I would have a rough go trying to find it if it already exists. No one has ever told me which sub-type of POTS I have. On the one hand, I have been told to use compression garments, increase my salt, and trialed on the usual drugs, none of which did anything. My heart rate was moderately high upright (15-130) and quite low supine (48-52). This was consistent for almost a decade. In addition, both norepinephrine and particularly epinephrine--supine and upright-- are high enough to warrant an adrenergic diagnosis. None of my doctors seemed too interested in differentiating so I let that go. I think the assumption was that it was neuropathic In the last month or two, my blood pressure, which has stuck to the lowish moderate range (110/75) for years has suddenly risen. I am getting readings as high as 140/111. I know lots of us get higher readings, but mine are....well, mine. I get alarmed (and I get alarmed about a lot of you as well, as you describe anomalies and difficulties. Just saying.) And this comes with tremulousness, sweating, shaky legs and arms, an inability to think, heart and neck pounding. This could be from something else--I do struggle with potassium levels and when my heart rate and BP go up, potassium is often the answer. I am not convinced that it is this time. And of course, it could be something entirely unrelated to dysautonomia, though I have to admit that lying flat for fifteen minutes start to bring down both BP and HR, though they are still higher than they were on average a few months ago. I find myself wondering if this is hyperadrenergic POTS, if it was always hyper POTS, or if it morphed somehow. Any thoughts to share? Thank you!

Me too. I often feel more pressure and tension than actual pain, though the line is sometimes a bit fuzzy. I do find that it mostly subsides when lying down. For me it goes with a really tight jaw as well. Does yours go away when supine, @albertspa?

Varicose veins happen when the valves in the veins are damaged--that is my understanding. Without working valves, the blood is not effectively forced upward and pools lower in the legs and feet. Which is also a common occurence in many forms of POTS. Could you be experiencing reduced blood return to your heart because of the varicose veins?

My daughter uses it to help her focus, when she has to take an exam or do a difficult drive. I keep thinking I should use mine for important doctor's appointments and the like as well. It has different 'modes' or, I suppose, patterns of sound waves, that supposedly produce different results. I have mostly played with the ones that calm things down and help with sleep, but I should see if I can get more out of it in terms of sharpening my focus when I need that. Because....I do need that sometimes!

Me too! I use it primarily for enhancing my sleep, but it also helps me a lot when I have done too much and my nervous system is in crisis. The refund is full (less shipping) for 30 days, so the risk isn't too high.

I've had some significant flares from some COVID vaccines. Not every time and it has been hard to sort out why the same vaccine leaves me bed bound for two weeks on one occasion and causes merely a mild rise in symptoms on another. I have not had any problems with flu vaccines, just as a data point. Also--I got the new Novovax (non-mRNA) COVID booster last week and didn't even end up with a sore arm. A complete breeze.

Sending you BOTH best wishes. I hope your BP meds get straightened out at the ER* and they treat you well while there. And Doug...I find that some days (or some stretches) are just inherently depressing. Usually when there is almost nothing I can DO. Feeling so powerless--and not just at the hands of a body that isn't working, but because of the so-called helpers who are not always very helpful at all. Hang in there....I am sure you will see something out your window tomorrow that will cheer you a bit. Most likely something that is not human! *I was in the ER last week and the doctor came in and said: Oh, you have POTS. Most doctors do not have it on their radar, but my best friend has it. In my experience, people with POTS know a heck of a lot more about what they need, what helps, what works to alleviate their symptoms than any random ER doctor. So....what can I do for you? What would make you feel better? It was rather astoundingly wonderful. I got saline asap. I wish someone did know more than I do about what might help, but if they don't, it is a great second best when they don't pretend like they do.

I wondered about that as well. And not being of a tech-oriented mind, I thought--some sort of linkage to the software. Don't laugh too much. Still...I can't imagine why. @MikeO--you are probably correct that it is a holder of some sort. This is particularly bothersome to me as well. The earpiece is only of value when paired with the subscription, so overall, it asks a lot of us financially in order for it to be of any use. If we do not find it of help....then it's a totally wasted investment? My circle of knowledge on this is small, but I do know of two other wearables with this model that might be applicable to us. I believe there are others for athletes or would-be athletes... Visible has a free app with which measures all sorts of things over the course of a day--sleep, activity, stress, steps, energy expended and remaining. They have recently launched a subscription service which includes--like this model--a device, in this case a Polar arm band. You buy the armband (for $70--which isn't too bad) and then the enhanced service offers lots more data sent to your phone all day, including alarms and such. They are working on dysautonomia measures, including being able to measure 'up time.' I believe the monthly cost is $15, just for comparison. Also--Apollo Neuro, which I use daily, has had a wearable you buy for about $350 and then free programming on a phone app. It does no tracking, but rather provides interventions, sleep and stress support through sound vibrations. They recently started an enhanced subscription program which offers a couple new 'modes' the device can be put in, like 'stay asleep.' I can't recall how much, but I passed. I'll manually select 'sleep' in the night rather than fork over more money each month. I believe that there are a lot of people working on how to help those of us with complex illnesses whose motivations are good. But there is no denying that particularly with the sharp increase of those who have dysautonomia (from long COVID) we present as a pretty deep and as of yet untapped market.

Yeah....it is a lot. And there are so many potentially helpful things to spend money on. It is hard to know which investments will be well worth it and which will end up in the back of the closet.

They just emailed out a pricing survey so we get a chance to see what they are thinking about financially: https://www.stat-health.com/pricing-survey The accompanying email suggests that they have not decided on pricing that they will end up using, but are seeking feedback at this point. I share it here in case anyone wants to comment/vote, and particularly because I think some of us have been waiting for more info on the cost. At very least, this gives us an idea of what they are currently contemplating.