MTRJ75

Thanks for the resource. I've only briefly skimmed so far, but if this is for the general population instead of dysautonomia patients, I wonder if the mechanisms are going to be different. Maybe the answer is further down in the study. If the heart is normal and nothing is wrong though, why would it be a bad idea if we were somehow able to retrain ourselves to not feel them so badly anymore?

Do you remember anything that might have led to your remission? Was there a particular mindset? I've read things about people more at ease with their symptoms potentially being more likely to recover. What we resist persists maybe. Much either said than done of course. Edit: Also, thank you for coming back and posting even when you're well to give the rest of us some hope.

Two of the oral surgeons I visited were reluctant to do the lip biopsy due to potential complications and that was enough for me to bypass it when they said treatment wouldn't differ really. As for the urinary frequency, I've had it most my life, but never really considered it part of any abnormality until I had to go six times during a 2.5 hour movie a few years ago. I was initially very reluctant towards any medications because I believed unnecessary antibiotics and PPIs had helped create my current situation. I gave in last year and I'm at the point that I'll try anything they want and still have a few ideas of my own that I'm pushing for (LDN, medical cannibas). I'm currently on break from the Lexapro after just 3 weeks due to an infection the neuro wants cleared up before I try again. I had thought it was helping with the temperature dysregulation, but that came roaring back a week, so I'm not even sure it had kicked in or done anything yet. I don't have good luck with most medications. I seem to get the downsides more than the upsides of them the last few years. But we're all different, so who knows. Hopefully your experience will improve, but I'm finding issues I've had most of my life that nobody else did, which I didn't know were abnormal and I can probably now blame on ANS dysfunction. I'm trying to stay optimistic (when I don't feel I might be in need of immediate medical assistance) because there are so many cases of people improving or sometimes even recovering, sometimes without much medical intervention even. There's got to be an answer, but unfortunately it seems to be personalized for each individual case.

I'm guessing there's no universal answer to this, but anyone who has an easy solution would be a savior. I don't, but I'm right there with you. It's the least anxiety producing of the types of palpitations I get on it's own (if there's no racing or skipping to accompany), but most frequent...almost constant. I feel like I can never fully rest or relax. I can generally feel my heart bouncing whenever my back is pressed up against something, leaning back or lying down. Much less frequently when sitting forward or standing at least. Some heart pounding after exertion would seem normal, especially for most of us who are deconditioned, but it seems to last a long time afterward. I also get a shakiness in my upper chest and shoulder blade area after being up for more than a few minutes, which I also don't feel until sitting back down and leaning back. I sometimes wonder if there's a mental solution to this. Something we can train our brains to ignore or not sense anymore? It seems to be one of my symptoms that is more receptive to distraction at times. I even sometimes question whether it's something my brain is just magnifying, but then sometimes I'll be able to feel with my hand or actually on parts of my body, my heart pounding just like it feels, so I don't know. I guess the key question is what exactly is the cause? What's happening in our bodies to cause this particular sensation? Edit: I also sometimes think I feel my heart pounding or racing once in a while, and realize it's not in line with my actual pulse. I'd love to figure out what that is.

Thanks @Pistol. I hate to hear others have the same experience but it helps confirm things. Neuro is pulling me off Lexapro while I fight the infection. Woke up early this morning drenched in sweat with heart rate all over the place and pounding, nauseas and tingling pain. Can’t tell if it’s the infection, my condition or the antibiotic now. Ugh. Don’t know what to do. Prescribing doctor not open yet. I can’t get to pharmacy today to get new antibiotic even if he prescribed one anyway. Maybe I should just take the next one and ride it out.

HHi Ida. I'm more house and occasionally couch bound than bed. I'm by myself half the week with my mother staying with me for a few days a week since my condition has deteriorated, but I try to limit the burden I place on her as much as possible. I sincerely hope you can find some way to improve, but have you checked with your insurance company to see if you can get some daily assistance?

Finally put in a call to the neurologist. Waiting for a call back. But in the meantime. I was somehow able to make the foot doctor's appointment I made this morning and found out that I have an infected toenail. Antibiotics. I don't have a fever or any other signs of infection, but I'm wondering if this infection is making these dysautonomia symptoms unbearable and still wonder if I'll eventually need the ER for fluids at the very least.

Boy, I guess I'm a liar because I've been in the midst of an attack for the last hour and my heart rate is spiking. Strangely dropping into the 80's when I stand up. I have no idea what's going on.

Thank you. I've been taking a nightly high quality magnesium supplement for around a year now, so I'm pretty sure it's not that. I was told the new med (Lexapro) was intended to calm down the nor-epinephrine and histamine spikes. Apparently not working after 3+ weeks I guess. The weird thing is my heart rate doesn't always spike, but it certainly pounds. It can be going 75-80 and still feel like it's going to blast out of my chest or back. It truly is torture...on top of everything else. I guess the good news is that last night's attack was only a one timer. Didn't come back two or three times within the hour like it has been doing. I mostly posted in panic of anticipation, which I know is something I need to stop doing because the attention and anticipation only makes things worse....as long as I'm sure it's not dangerous, which is a place I've yet to reach in my mind.

Posted an update in my last thread here a few days ago... but this has happened a few evenings/nights in a row now. I've had this burning ache in my arms and across my chest, not entirely new. In fact, I've been feeling some form on and off fora few years now. Feels like it's all a thin line right across my upper body. Been a bit more of a daily thing for the last week though. However, I don't seem to really feel anything when I'm up and moving around, but as soon as I sit back down I get this trembling feeling in the upper part of my chest and my body starts heating up and sweating and it all seems to stem from this area, even though the heat and sweating can eventually encompass the entire body and include my digestive system. I'm guessing there's some sort of anxiety that adds to this because it can get pretty d*** scary and I don't understand what it is. Feels a bit better when I'm lying down. I can also be woken up in the morning by the burning ache in my arm muscles that'll linger, but without the body heating. Could this be an adrenal surge? Does it sound POTS related? Sometimes it goes away after a few minutes, but sometimes I've had to deal with several bouts of wondering if I need immediate medical attention before it ends for the night. Absolute physical and mental torture. It feels like there's nerve damage in my chest, but that doesn't seem right. I wouldn't even know what to tell them if I went to the ER. I really don't want to have to phone the neurologist again tomorrow after just getting him to change my meds a few weeks ago.

I guess I spoke too soon in my last post just above because the symptoms in the original post up top came back with a vengeance last night, first time since I'd started on Lexapro about three weeks ago. I'd felt my heart was pounding more than usual all day long and found it really hard to get comfortable. Just sitting there, watching TV around 10pm, my body started heating up, drenched in sweat, gastric emptying, some nausea, internal trembling, arm ache. You know, all your classic heart attack symptoms (again). Tried to keep my calm. It eventually went away, but then all came back around again a second and third time, eventually turning into panic, as it was just me and the dog and I didn't have a car last night. Really thought I was done a couple of times, but refused to call an ambulance because what would happen with my dog would stress me out even more. Was eventually able to lie down and sleep. I can feel the same kind of heart pounding and intermittent chest pain (nothing new though) today. A couple of times I've felt my body start to heat up, but not nearly as bad as last night yet. Just trying to remain calm and cope. Looking for some sort of distraction. Amazing how some of these symptoms can so rapidly come and go. From hour to hour or not show up for weeks or months at a time. Not a fun way to exist.

It's going to be difficult to get the answer you want here for two reasons: First, the people reading and replying are generally struggling. Healthy or recovered people are unlikely to be spending a lot of time in a forum like this. If they've recovered, they're probably out there living their life. This is the last thing most of them might want to be reminded of. However, I've seen some forums where people have claimed to have recovered from certain conditions and when they come back to post about it, often, they are not very well received. People might be skeptical that they ever really had what they claimed to have in the first place or they might be suspicious of someone trying to sell some kind of unrealistic cure. I truly believe there's an answer to every question. Sometimes it's just that answers haven't been found yet and that can be incredibly frustrating. I know people recover from POTS or ANS dysfunction in general. I don't know what the % is or what specific subsets of conditions are more or less likely to be recovered from, but if people have found solutions or recovered from any of this, why shouldn't it be possible for someone to eventually figure it out?

I hit around 150/100 the other night. This may have been the result of a new medication though. I've generally been fine or a little low for most of the last year. A few years back, I was borderline high. The last few weeks I've been a bit above 115/80 when sitting, drops below that while lying down. So yeah, all over the place. Could medication be a trigger for you?

I'm sorry you're dealing with this too. It's amazing how much our symptoms flip flop and change. I was having skipped beats all the time and they've gone away for the last month. Some of the symptoms from my original post have been absent recently, whether due to medication changes, season or just being cyclical, but now they've been replaced by increased nausea and pain. Which, of course, makes it so hard to deal with doctors because who knows what will be our worst symptoms by the time we see them. I'm not expecting any answers as to what or why any of this is happening any time soon. I've just given into testing different medications until something pops. In the meantime, I'm working on some neural rewiring or whatever aspects might i might be able to control somewhat. I'm glad you've improved from some of these symptoms. Hope you can find relief from additional ones.

I just had to cancel an endoscopy the morning of a few weeks ago because I couldn't handle the prep (ie no water). Sjogren's makes me naturally dehydrated and I told them the no water thing was going to be a disaster for me. Evidently they haven't gotten the notice yet about any change in protocol because they had me stop drinking at midnight for an 11 am procedure.

I never knew this. I have a lot of these symptoms and my pulse pressure has generally been low the last couple of years. I've told doctors about the low pulse pressure and they've all said it's not a big deal as long as it's not too high.

This happens to me fairly often, but not as frequent as some of my worst symptoms. Recently, I was driving (a short distance thankfully) and noticed I had trouble holding my arms up to keep them on the wheel. It's a bit strange though because for me it can come out of nowhere and last all day or could dissipate in an hour. There's usually a deep burning ache that goes with it. What's really strange though is when it does go disappear rather quickly, it's generally after something interesting genuinely distracts me, which makes me wonder about some of those brain rewiring theories. It has to be an organic distraction though. I can't force myself into it. Doesn't always work, it's sometimes temporary and usually doesn't work as well for other symptoms, but strange. I guess maybe one of the reasons is that as uncomfortable as it is, it generally isn't one of my scarier symptoms.

I would guess it's something in the environment that time of year that triggers the MCAS in a certain way? Thankfully, this particular time, it seems to be receding before it gets too bad. Still going to stay on the MCAS trail in an attempt to prevent future outbreaks.

These particular rashes...yes. As early as August to as late as Thanksgiving. Of the six or seven years this has been happening now, both the earliest and latest instances occurred last year. This is the latest in the year I've had my first rash, so perhaps that's good news.

That's the thing I can't do. Travel. I'm in a situation where if I can't drive, I'm not getting there, which hardly even matters because it will probably require going out of state, which my insurance won't cover. I thank you for the responses and certainly will pursue this direction as far as I can though.

Yup, as I've said, this has been a big part of the problem for me. A lot of doctors are quick to label something they don't understand as anxiety. I guess I was pleasantly surprised that my neuro even knew what MCAS was even if he didn't think it was something that needed to be immediately pursued. I'm fairly certain it will be near impossible for me to find someone experienced in dealing with it. (Difficulty traveling and insurance with limited options.) I'm just hoping to find someone willing to explore the possibility.

I didn't know there was a specific test for MCAS. All I have to do is convince a doctor to run it on me. It would be wonderful if blocking histamines could cut these off before they started.

To be clear...this particular device is not available on Amazon, just the parts to make one? I already have access to a TENS unit. Where would I find a compatible ear piece? Do you know which particular symptoms it helped too?

Yes, we have had the antihistamine conversation a couple of weeks ago. Thank you for that though. I will revisit with my neuro. The complicated thing about that is we have to try to avoid anything that will complicate my Sjogren's dryness.

I've been to an allergist and several ENTs. I certainly have seasonal allergies (every season now basically). They only suggest stuff like Claritin and nasal sprays and irrigation that don't do much. I've brought up MCAS to several doctors. Some have looked at me like I made up the word, a couple have brushed it off and yet another said maybe, but they wouldn't know what to even do about it.