MTRJ75

It’s good that this is happening while you’re wearing the monitor. Yes this sometimes happens to me, occasionally without any pattern. I have noticed it’s more common after meals, especially carbs. Are you on beta blockers yet? It’s frustrating and can be frightening.

Okay, right. That's what I meant initially if I stated it wrongly. The one thing is that a car and house don't count as assets. They're mostly concerned with money in any accounts....which, I don't know how you're supposed to acquire a house or car if you can't save anything. Point being, SSI will help (it's like a blanket to fall on when needed), but I need to get from SSI to SSDI as soon as possible.

Now I'm even more confused. Do you have asset limitations on SSI @KiminOrlando? My work history has been on and off last 15 years. I've had gaps because I probably waited too long to apply. I tried very hard to avoid this.

I don't know that I understand enough to explain it well and I may even getting the two mixed up, but you need a certain amount of work credits over a 10 year period (and there's also some correlation to age) to be eligible for SSDI. If not, you get SSI if you are considered disabled and make less than a certain amount of money. As I said, I was a few credits short. I believe SSDI is more money and also SSI doesn't allow you to have more than a certain amount of money or assets to your name or they stop paying you. In my case, I can't work nearly as much as I used to. I still try to work as much as I can, but I can't possibly live on what I'm currently able to earn on it's own, due to being disabled. If I am able to make more than a certain amount in a month, I am no longer eligible for SSI payments. For SSDI, I believe it would be more money and there may not be limits on assets and savings. Under SSI I can't save any money or payments stop I believe. Again, I may be wrong about a lot of this, but I'm pretty sure SSDI is better than SSI (or the other way around - whichever one you need the work credits for).

Thanks for that. And all the responses here. Seems like the work is never done. I was wondering how all this would work with or without the lawyer. Can't afford to keep paying him every year. Also at some point in the next year or two, I'm probably going to accumulate enough work credits for SSDI, if all goes well enough (currently SSI). I was told I was close this time, but nobody will give me a direct answer on how many I need exactly or what happens when that becomes the case. Anyway, I hope this helps others going through the process as well. I know I've seen a few threads in the past year.

Yes, but only if the Maiden was on fire too. Seems to be something going on with lactic acid because the aftermath is similar to what I used to feel after workouts, especially weight lifting (back when I was able to).

Finally received and read the 6 page decision. Apparently it was the IME (Independent Medical Exam) that wrote that I was fine and that my symptoms were "somatoform" and a result of an "adjustment disorder". The judge, not having any previous experience, must have initially bought in. It was in fact three things that "persuaded" her": - During the initial telephone hearing, the occupational expert identified a plethora of sedentary jobs someone in my position could perform. My lawyer asked one question about how many of those jobs someone who couldn't consistently sit normally because of blood pooling could perform. The answer: zero. - My lawyer sent my neurologist a detailed questionnaire which he considerately filled out specifically on my abilities and inabilities. - The fact that there are complaints to several doctors going back several years before I even applied. - The testimonial mentioned in the OP of the independent psychologist, who understood the condition and convinced her this was a physical illness. I also received a letter from my lawyer with further guidance that I should continue to keep in contact with doctors and vocalize my complaints and symptoms, even if I don't believe they can help me. The reason is, at the end of the decision, the judge wrote: "Medical improvement is expected with appropriate treatment.' Consequently, a continuing disability review is recommended in 12 months." Obviously, I'm thrilled that they've found a doctor who can improve my condition. But they are going to need ongoing records from doctors visits and any kind of complaints I might have.

This is always one of those odd symptoms I feel I have difficulty describing to doctors or really anybody, but luckily haven't had, at least to this level, in quite a long time. I'm actually wondering if it's partially a vax effect. So I've still been getting these surge type feelings in my shoulders or coat hanger area, which are uncomfortable for a couple of hours and then seem to dissipate. It's like someone's gripping you, maybe a little bit like sunburn too and some pins and needles. Anyway, this is how I woke up today and tried to ignore it. Around mid-afternoon, it started to branch out on me until it enveloped my whole body. Heart rate normal, oxygen levels normal. The more I tried to ignore it and carry on, the worse it gets. Full body squeezing and pins and needles. Even my head and neck were buzzing so hard I felt I might actually drop. I tried to put everything down and relax and it got worse. I get up and go get a glass of water, it temporarily decreases while I'm moving. I strain or clench up and it relieves it a bit, but as soon as I try to relax again, the tension and burning comes back with a fury. I've actually ended up in the ER with this symptom a couple of times in the past, especially when it occurs when I'm trying to sleep. This was one of the rougher episodes now and I'm not sure if it's fully over or not. I thought it was done or calming a few times and surged back. My mother got the idea to check my blood pressure during this and it was consistently 145-150/90-95 (I'm normally close to 120/80) no matter how much I tried to relax. Down a bit now, but still somewhere in between that and my norm. I hope this is a temporary surge, but will have to keep checking for the next week now. So here's the vax part. First shot a week and a half ago. For four or five days I actively felt my nervous system a bit more heightened and uncomfortable than usual. But then this week, I felt I was back to my norm, if not better. Not feeling good or anything, but no serious concerns and I realized I even went a couple of days without PVCs. It's been cold and wet all day. Fine, that's part of it, but I'm wondering if the vax is keeping my nervous system, maybe not on high alert, but much more sensitive and easier to tip. Or maybe it's just some whacky part of my dysautonomia or neuropathy that wants to constantly remind me it can destroy me at any time and without notice. And for as long as I've been having these surges (years, before I even knew what dysautonomia was) I still don't know what's going on inside my body during them or what (if anything) sets them off.

Thanks @PistolI got a lot of that too from my reading, but it sounded that the way they explained it was the above may only apply in the context of Diabetic CAN. I can't find anything about mortality or treatment for other AI caused CAN. My neurologist uses Autonomic Neuropathy and Autonomic Dysfunction almost interchangeably, though I know they're not the same thing. Is this something I need to pursue a bit more aggressively with doctors? This has always been my chief concern with this constant chest discomfort. Though I can't explain the feeling, I know my heart beats differently than it used to. It's very uncomfortable even when the PVCs are less aggressive. This has always been my concern with all of this.

I'm continuing to roll through these with the neuropathy talk this weekend. I'm a bit confused about one of his more controversial points during the presentation. He said that diabetic cardiac autonomic neuropathy led to worse outcomes than other types of autonomic neuropathy without underlying disease. Even after later clarifying, I don't know that he differentiated between different types of AI caused autonomic neuropathy. For instance, if my Sjogren's is the cause of autonomic neuropathy, is that the same thing? Because every time I've tried to research cardiac autonomic neuropathy, all the treatments center around glucose control.

A couple of months after my first hearing in November, I got a notice of a second hearing. My lawyer said that this is unconventional, but better than a denial. He had also learned that the medical expert they wanted to bring in was psychiatric. My initial reaction was frustration, but it turned out be the turning point in the case, I believe. The judge questioned the medical expert about something one of the doctors I'd seen (I don't know which one) had put in my records about a somatoform disorder. I got extremely lucky that this psychiatric expert actually understood the condition. He told the judge that POTS and autonomic neuropathy can cause similar or even the same symptoms as anxiety and cause depression, but these are definitely physical illnesses. He was adamant with each question asked that it would be outside of his expertise to give an opinion because I had a physical, not psychiatric illness. I don't think I could have asked for a more favorable testimonial. The judge left off saying that this was difficult for her too because this is not the type of case she's used to dealing with, but we'll receive her decision by mail soon. This week, I got a phone call that SS needed to make an appointment with me to discuss my finances. When I asked why, they said because I was approved for full benefits (I didn't even know there were partial approval options too until the lawyer's office told me). So this is the best news I've had in a while. Now I just need to get well enough to work on a more consistent basis and get rid of it.

Thanks. It's weird that you had worse symptoms after the 1st shot than the second, but maybe that's better off. I think I'm still struggling with some of the after effects. My nervous system lit up with twitching and jerking and burning and pins and needles all night last night too. The heart rate is slowly starting to come back down though.

First Moderna yesterday. It was funny because when the woman who did my shot told me about possible symptoms in the next day or so, I told her I walked in feeling like that. Aside from the expected soreness and increased tiredness, my heart rate has been elevated a bit more (10-15 bpm) when lying down, though that seems to be improving today. My oxygen was a bit lower than usual (91-93 lying down). And today, I've been having some issues with my right hand cramping, locking up and some twitching (even though the shot was in the left arm).

I swear I just came across this product (or something like it) from some other source I can't remember a few days ago. I've been taking the H1 (Clarinex) for a month now and the H2 (Pepcid) for a week to no real benefit yet and was looking to add a stabilizer. Good to know this has worked well.

Thanks all. I'm considering breaking the pills in half.

Finally got the insurance company to cover. Cardiologist is shocked. The prescription is for 5 mg 2x daily. Is that the common dose for most who are on it or is it less? Asking because I know lower doses of Propanolol seem to be more effective in POTs than normal sized doses.

Good to know. I wonder about side effects in those of us with AI conditions who aren't on any immune modifying medications though.

I don't have an answer to your questions, but my mother worked for chiropractors from 1985 to 2015. I've regularly gone to several of them (though none since the pandemic). A good chiropractor can make a big difference, especially to those of us who aren't able to regularly move our own bodies as much as we want. And yes, most benefits I get from them are temporary because my body goes back to it's old habits. One reason may be the rubber band theory. The body will inevitably snap back to whatever condition it is used to.

https://www.dysautonomiainternational.org/page.php?ID=228

Ha, I'm shocked the ER doc didn't ascribe it all to anxiety and send you home with some xanax. I've always had chronic gastritis, dating back to well before my dysautonomia issues. More than 15 years. Just recently I've heard that this can have a mast cell cause as well. I should add that I believe whatever muscular instability I have in my throat/chest also feels like a factor. Very trembly, like an old car in the cold. Like things need to be tightened up. This feels like where the twitchiness or stuttering comes in and is the part that's responsible for most of my concern in coordination with cardiac nerves.

I just watched Dr Chopra's presentation from the Dys Conf 2020 on Pain Management in Dysautonomia. I highly recommend if you have access. At the 20 min mark he goes into Mast Cell treatment. At the 40 min mark he goes into LDN, which is one of his favorite treatments.

Thanks @peachychou123I believe it's a combination of digestive system (not necessarily immediately after eating/drinking, but not very long after each time) and thickened mucus (sjogren's) causing it. Thankfully I've gone a week without another episode. Now I just have to stop the anticipation.

It seems like you're already getting some MCAS treatment even if the doctor doesn't buy into it. Again, someone else will probably know more than me, but I believe there are special compounding pharmacies for LDN. It still seems you're taking too large a dose and probably not exactly the same amount each day. As to that last part, I'm not sure what AI is responsible for in us, but perhaps AI issues are the cause of most of our issues.

How was MCAS ruled out? Listening to the 2020 Dysautonomia Int Conference presentations, mast cell issues are brought up in almost every single one and some of the doctors don't seem to trust currently available testing. They often figure it out by trying to stabilize mast cells and see how patient responds. From what I've been listening to and reading, the digestive tract is certainly affected. That's where most of the immune system is located. Someone who knows Naltrexone more than I do should probably comment on this, but I thought you weren't supposed to go past like 4mg of LDN (otherwise it's no longer really low dose I guess and benefits decline). Anyway, I just got my neuro to trial Clarinex, which I believe is an H1. Just started this week and not really doing anything yet, but I also read it suggested somewhere that you need an H1 AND H2 for severe cases. I don't know, maybe you're already on the medications they would put you on even if MCAS was confirmed.

This is great news. It must be amazing to hit on something and know it's having a major positive effect. One of them kept coming up when I was looking into MCAS solutions (at least I think it was one of these two or something that sounds similar), but I can't remember which one.