MTRJ75

I certainly do find that abstaining from measuring things that aren't currently bothering me can greatly reduce my stress levels.

I realized it wasn't worth the effort with my PCP because there was nothing he had that would have helped my cause anyway. The cardio and neuro were the two most important and very cooperative. Two days later, while this is the part that continues to infuriate me the most, it's also beginning to feel like my biggest out because they are acknowledging the condition. I just have to get them to realize they're completely ignorant about the "recovery period". I know they didn't get that from my cardiologist because she suffers minor autonomic issues herself.

The letter said different states and programs have different rules, but the universal thing seems to be a misunderstanding of invisible chronic illnesses. Thankfully you were able to find compassionate judges and were able to articulate your cases well enough. I'm not even sure I could do that depending on the day. I was hoping to avoid having to give away a good chunk of any back money I get because I know it's not going to be a lot anyway, but I need someone who has the know how and energy to push through and find the holes in the system. @Pistol In my case, my current PCP is working more against me than for me. He's my 4th one in five years due to insurance issues and there really isn't anyone else in the immediate area who takes my insurance, so I'm stuck for the time being. He called me in for an appointment when he got the letter from disability and gave me the letter. Said he wasn't going to send them all his notes. It was too much. From the correspondence I got from the disability office, I'm not sure he ever sent them anything, which probably didn't mean much since he doesn't even know what POTS or dysautonomia are.

Got my denial notice from disability today. Not unexpected. I knew I was screwed when I went for their independent doctor's exam, which was a bit of a horror show. Not sure whether it was fortunate or unfortunate I wasn't at my worst that day because if I were, I wouldn't have been able to get there. But none the less, I was exhausted an shaking internally by the time I got to see the doctor, two hours after arriving. I actually considered it a positive sign when he didn't ask me what dysautonomia was, but he did write it down as autonomic dysautonomia...as if there were another kind. The entire examination had no relevance to dysautonomia. I was asked to move my limbs forward, bend, and put my hands above my head. He bent my wrists and knees without pain. They took a lying EKG and said it was fine. I asked if he's like to see the any of the ones in my ipad which weren't okay and wondered what kind of jobs I could do lying down. He asked me who did the house work. I responded that I just don't let anyone in the house anymore, but he was adamant that someone had to do the house work. Who vacuumed? Nobody. Somebody had to vacuum. Who vacuumed? When was the last time you vacuumed a room? How far can you walk? I don't know. How far can you walk? It changes every hour and it's not necessarily the walking itself, but the after effects. On a good day, can you ever walk a block? Maybe, but I won't be able to move for an hour or so afterward. Can you shower by yourself? I can shower, I may be able to walk a block and I may be able to vacuum a room. I may be able to do any one of those things on a good day, but just one and then do nothing but lay on the couch for hours afterward. I absolutely knew that the line of questioning was almost discriminatory against dysautonomia and was expecting this rejection letter which is highlighted by such statements as... - my age was a significant consideration because I people evidently can't develop chronic conditions before a certain age. - "Your limbs have pain. However, it does not limit my ability to move about and use your limbs." Absolutely wrong. - "You have experienced heart problems. However, following a recovery period, you should be able to work." This is great news! I'm going to recover from all the cardiac issues. They just don't tell me how long this is going to take. So now I have 60 days to appeal. I guess my question is if anyone knows of any lawyers or groups that can help people with our condition with these claims and appeals, considering the conditions work against us. Ideally, what I'd like to do is challenge the whole system to change how conditions like ours are discriminated against by the current process, but I doubt anyone is going to want to take on that fight or that I'd have the energy to do it anyway.

Probably because that guy who "invented" his own experimental adrenal surgery was in the news a few months ago. There was a thread or two about him on here I think. People I knew who don't understand anything about my condition were texting me that his case sounded a lot like mine.

I don't have an exact number right now, but mine can get pretty narrow when standing up on occasion. Obviously, doctors have never been concerned. I actually had one in the ER that was 125/106 and the nurse said "what the h*** is that?". She thought it was a bad reading. I tried to convince her it wasn't, but she just threw out the reading and did it again a few minutes later and it was closer to normal.

I think it's more a safety thing if someone passes out or were going to fall. The way my cardio and neuro test me all the time is lying down, sitting than standing for a few minutes each. They say they could do the table test and potentially make me pass out, but it wouldn't change how I'm treated. Although, I may have to at some point if the diagnoses isn't being accepted in certain places without the TTT.

To add to this: https://pubmed.ncbi.nlm.nih.gov/32079137-ganglionic-acetylcholine-receptor-antibodies-and-autonomic-dysfunction-in-autoimmune-rheumatic-diseases/?fbclid=IwAR1CADHMaaVcakTZkV9lqGvMjfBKP1hRYh2U4sUVcd6dV42Gdd8eHRLv-Wk

A few good nuggets from an article I read yesterday: https://goop.com/wellness/health/pots-and-autoimmunity/?fbclid=IwAR2aPb_ZjmvKSWTGuXFu0IuaCE00B_t3K-2Ms6xvQ-VUdtUo9ptcqrTWuL4 Okay, but why does our heart still race/pound/skip when sitting or lying down so often? I know some of us strongly suspect AI issues, but I've never heard it stated this confidently before. I've had basic autoimmune bloodwork done a few times, but don't know if I've ever been tested for stuff like antimitochondrial antibodies or alpha-one autoantibodies or any of this other than CRP and sedimentation rates.

No, apparently she does not do that.

Cardiologist responded to my e-mail and said: 1 - Don’t think it is afib , looks like sinus (ie normal rhythm) with premature beats 2 - Please don't use this e-mail The solution seems simple. Either find a better way to hydrate myself (water, salt & electrolytes don't appear to be working) or stop eating. It's been almost two months since my ER visit for my first bigimeny episode. The 24 hour IV finally stopped the PVCs. In fact, it d*** near stopped all of them for about two weeks. They've been slowly creeping back. But I guess last night was the first episode similar to what sent me to the ER. Every swallow caused several skips. Ironically, I went for something called PEMF therapy with an Ampcoil last week. They put it on a specific setting to help with hydration. This was Wednesday. I was about to e-mail them and let them know that my PVCs had calmed down again for the few days afterward until the events of last night. And I did have a period of feeling extremely dried out to the point of extreme nausea and dry eye pain about an hour before the arrhythmia issues began. I don't know. Sometimes feel like I need to drop dead to prove a point. A few steps forward often seem to be followed by at least double that many backward.

There was definitely a lot of skipping going, especially when I was swallowing food, so I wonder if that's what it was. All of my readings since have been normal. Still glad I caught the reading while I was symptomatic though. My wrist pulse will sometimes feel chaotic, but not for more than a few seconds at a time (like 15-20 beats or 15 seconds or so), so I never can tell. It never lasts, which is obviously a good thing. And to think, I was planning to post this week about the slight improvements I'd felt I'd been making.

Thank you. Sent it to my cardio, but not expecting to hear back from her till tomorrow. I've never sent her a report before and I've never had a possible afib reading despite frequently taking readings with skipped beats (resulting in normal readings). I thought once or twice before I felt like I may have been in afib shortly, but never confirmed. Never caught on any kind of monitor before. Of course, any kind of disturbance will exacerbate my concern which will make the condition worse.

Thanks @AlexD It's a bit comforting to know that you've had a similar reading without issues. Also just found a study that seems to confirm esophageal or food swallowing involvement. I'm guessing this is a good answer, but I'm not sure and it doesn't tell me what to do about it either though. https://onlinelibrary.wiley.com/doi/full/10.1002/joa3.12125

Things had actually been going a bit better since the calendar turned. I've been trying to do more things on my feet, not always successfully and my Cardiac MRI came back okay. Which all makes tonight's episode even more frustrating. I had done some stuff earlier in the day, but had become a bit shaky and nauseous with some vision focusing issues. This all happens sometimes. I tried to rest it off for a bit, but then needed something to eat. I grabbed a couple of gluten free ginger cookies thinking they might help with the nausea, which really seemed to be severe dryness (I have Sjogren's or at least all the symptoms). All of a sudden, while eating I felt some really hard skips, almost to the point where I felt like I had trouble breathing. Of course the panic also sets in and shot my heart rate up, which made the skips worse, but I grabbed my Kardia and took an EKG. Even when I have the skips, even to the level that they greatly concern me, I've never really had any abnormal Kardia readings....until tonight. Came up "possible afib". Okay, great. Took a beta blocker. Things got worse, but now have since calmed down. Still not sure what to do. I'm not looking forward to spending any more time in the ER. I'm wondering if there was some mix up between the cardiac and digestive nerves caused by the extreme dryness that caused that and if so whether something like that is a concern or not. Of course, now I'm anxious about eating anything as well. Anyone with any experience with anything like this?

I've never given up the conviction that I will eventually recover and get back to a lot of these same things, but I caution you not to set hard goals and time limits because you can move forward and then throw yourself back into despair if something happens that's not under your control and you don't meet these goals. Optimism and direction are great, but be careful not to let it turn into frustration. I still struggle with acceptance sometimes, but it needs to be a tool in the toolbox (I feel like this right now and it's okay. I still believe it's impermanent.) or you'll drive yourself mad and suffer worse setbacks. There is one school of thought from a popular neural rewiring program that suggests you should operate under the belief that the changes have already occurred. You're already okay, but you "choose" not to do things. Not because they'll cause symptoms, but because you'd rather do something else. Yes, it's a bit of a lie and you're trying to trick yourself, but that seems to be the point.

These are some horrifying stories and I'm probably headed that way myself. I've been dealing with trying to get some form of disability the last few months and know, due to my work history (or lack of it) over the last decade that even at best, it won't be nearly enough to support myself. However, I can't even allow myself to be concerned with finances because the additional stress would make my condition even worse. This often frustrates people around me (mostly family), but they don't understand what additional stress can do to me. I'm indoors with heat, clothing, food and even internet today. It's just not good for me to think past that.

Agree about the method of delivery potentially being an issue long term, but this sounds like saying someone could become too dependent on oxygen for breathing. And any doctor who would base treatment on something they heard about some people would greatly concern me as well.

Yes I get this if I'm on my feet too long. I often get it when I sit back down from being up for more than just a few minutes often. It's mostly like a chest tremble, but can feel like a shakiness or weakness in other areas as well. If this is the same thing you're dealing with, I don't believe it's heart related since nothing comes back on cardiac testing. Unfortunately, doctors haven't been able to tell the reason for it yet.

Wasn't really clear, but this is the type of thing I meant by "misdiagnosed". I'm not sure how to react to this. While I hate to say it's good news that this happened to him, it is a positive he was surrounded by people and probably relieves a lot of us that it was not due to dysautonomia alone, although it's still a young age to have this type of event happen to someone who's taking care of themselves. Even though it turned out to be a blocked artery, I'm learning now that these things aren't only a result of too much pizza and beer. Inflammation, which is more chronic in a lot of us, increases cholesterol, which increases the risk of blockage. But it's still a relief that blind dysautonomia was not the cause of this. Thank you for looking into this further.

Thank God he's okay, but this is a bit confusing. The article ends with him saying how much of a positive it was to know what he had and that it's not fatal. But cardiac arrest sounds like it can be pretty fatal. Was he misdiagnosed or is this condition a lot more dangerous than we've been led to believe?

IMO, most standard table salt probably is bad for you. Maybe not so much if you use a higher quality product (Himalayan Pink or Sea Salt).

Had my normal 3 month trip to the eye doctor today, but since I said things had been a bit more difficult since the weather turned, he did a bit more than he usually does. The good news is that vision is still fine and nothing looked off to him, but he's never dilated me before today. It wasn't until I started driving the few blocks home that I realized that I was experiencing a slightly exaggerated version of the vision issues I've been trying to explain to everyone all along. It's nothing that I noticed looking in the mirror or anything, but my eyes must be dilating more than they're supposed to all along. Have the neurologist up Thursday and will bring it up with him next, although I don't know if there's anything he can do about it and it's probably not even one of my top priorities right now as long as there's no progressive damage going on.

Conveniently, the first doctor on this list is the one I asked about in another thread last week. That seems to be an encouraging endorsement.

This looks very interesting for those of us who have difficulty traveling.