MTRJ75

I realize this. It’s just ironic that I went from always being sick to never and my bloodwork continued to improve even as my symptomology continued to expand. It’s about balancing the immune system not strengthening it in a way that makes it more active. Straight suppression might more immediately alleviate some symptoms but there are obvious problems there too. Turmeric is anti inflammatory, which would be a good thing.

Probably a weird thing here, but... I've had this constant...sensation in my chest, really my esophagus I guess, for a few years now. I think Sjogren's may be responsible for this, but there always feels like something's "stuck" there, like the constant need to clear something out of the back of your throat, but lower. The strange and incredibly frustrating part is, I seem to be able to connect this to my PVCs as I get them whenever the muscles in that are irritated or stimulated. I mean it ALWAYS seems like a PVC is stuck there just waiting to happen as soon as there's even a short jolt. I can sometimes set a few off by stressing those muscles when the build up in there (maybe thickened mucus?) feels strongest. It's really odd, like the potential PVC is just sitting there ready for the right jolt. Is this just a me thing?

This is a tough one. My autoimmune problems (likely Sjogren's) showed up a few years before the dysautonomia, though I never tested for anything on bloodwork. There certainly seems to be some merit to the AI/Dysautonomia connection from a lot of my recent readings, but that would also seem to suggest that helping the immune system would help the ANS. I've spent the last few years taking immaculate care of my immune system, such that all of my most recent blood work in just about every area was great last year and I hadn't actually had an illness in several years despite everything else that's being dealt with daily (although I had my first infection in several years last month). So the struggle for me is that while my immune system seems more balanced, the autonomic symptoms get worse and that shouldn't be the case if it's AI driven. I'm not sure I've ever been specifically tested for the anti-bodies you mentioned though. I'm going to have to ask about anti-muscarinic Acetylcholine receptor antibodies next time I see a doctor because on some level, I believe the dryness may be the cause of a good chunk of my problems.

I often have similar struggles with doctors, but have maybe gone about things reverse from you. My mother has worked for chiropractors since the 80's so I went in fairly well versed in alternative approaches and initially resisted heavy use of antibiotics, steroids and pretty much anything that might have adverse long term effects. PCPs kept pushing the anti-anxiety meds. I always asked for natural solutions that might have similar effects. I would bring books to doctors appointments with me, which would frustrate some doctors even more. Recently, I've given in to trying anything they throw at me because alternative methods haven't worked and I absolutely need something to calm things at this point in my current state even if I intend for much shorter term use than the doctors would. I've also realized I probably have to go through all of their protocols even if I still don't buy in, in order to get them to eventually try something different when they run out of ideas. My PCP didn't even know what POTS was a few months back. I had to explain to him what the cardiologist and neurologist have diagnosed. I've been unsuccessful in getting anyone to seriously consider MCAS yet and feel it a victory when I can find someone that even knows what it is. The problem for me is that I've reached the end of the line in terms of doctors covered by insurance that I can physically travel to at this point. As far as diet goes, I've been mostly AIP Paleo for a few years with different modifications suggested by several practitioners and testing. I had gotten to a point where it felt like I was eating only lamb, broccoli, kale and apricots as "inoffensive" foods. I even had someone suggest that stuff like cinnamon, pumpkin, coconut, garlic, chicken and a few other things I was basically living off at that point were bad for my blood type or current microbiome composition after specific testing. I'd guess that my current diet is probably pretty close to low histamine, but I'm running out of things to further omit at this point. I certainly see where your coming from. It seems we're of similar mind and your posts here have all been very encouraging.

I haven't gotten very far in the book yet, but the new information here leaves a lot to unpack. I've always assumed histamine was the problem and now hearing it may be the solution is pretty radical at the very least and more than a bit to wrap my head around. As the book appears to be over 15 years old, I was going to ask if there have been any updates in the science since then, but the author still appears to be doubling down on his initial work very recently, which is good to know. The other thing, which is always a bit tricky, is his current standing in the medical community. He talks about being reprimanded and forbidden to use his findings in a therapeutic manner. While I believe big pharma often suppresses effective alternatives to expensive medications for cost and profit reasons and sometimes the more cost effective remedies have trouble getting studies funded (LDN immediately comes to mind), well...it's a little scary taking every outspoken doctor with an alternative idea at face value too. How do tell the difference between genuine suppression of powerful medical information or someone who's taking faulty and dangerous ideas too far? I know that people are often called crazy long before history reveals them to have actually been geniuses, but also, not every controversial idea turns out to be a stroke of genius. Unfortunately, I'm at a point in my health where I'm willing to accept some risk, but still want to be very careful not to make things worse. None the less, thank you for all this information and it's so exciting that you've seem to had powerful results with it so far. This all makes me somewhat hopeful at least.

You're speaking my language now. I've found alternative health practitioners to have been far more helpful than traditional specialists so far because they are more open to new ideas and try to account for the entire body, not just individual systems within it. I've become more versed in medical speak than I'd ever intended to be unfortunately. Again, amazing results so far and thanks so much for sharing.

Congratulations. It's great to hear that someone has been able to escape some of this viciousness and very encouraging for the rest of us. Before I get ready to read 422 pages, are the general concepts applicable to POTS type symptoms or other forms of dysautonomia or just allergies/histamines? It just seems like quite a bit of time investment....which would certainly be worth it if there's an end benefit though.

I'm sorry I can't be of more help with your specific issue, but I certainly feel your pain (both physical and mental). The feelings inside my chest constantly have me wondering whether I now need to be in the emergency room and they're just so difficult to describe to my cardiologist as well. Just when you think you might have the pattern down and it's probably not dangerous despite how terrible it feels (though even that's so hard to believe - nobody can possibly consistently feel like this and have it be okay), something weird will happen that has a lasting negative mental effect. Best wishes. Hope you get a positive answer and some relief very quickly.

Yup. Here too. Also seems to depend more on what I eat. The drier it is and harder to swallow I might get some skips. More likely if I try to move around shortly after or while chewing. The heart rate increase more often seems to occur when eating something I probably shouldn't (gluten, sugar).

The odd thing about this is I can break out into drenching sweats just having simple conversations initiated on the phone or if someone comes to the door. Lots of seemingly simple stuff like that. However, in actual stress situations or emergencies...I'm generally fine, actually better than my usual physical state, at least temporarily. For example, almost being sideswiped by another car, having to rush my dog to the ER after a deep cut last year, a few days ago he charged out the door and scared the h*** out of the Amazon delivery guy who started screaming at the top of his lungs. All of those things, it seems I momentarily forget my condition and am able to get through. Having to talk to someone I don't know on the phone or a slight argument with a family member....catastrophic physical disaster. I have no idea why, but would dare suggest the anticipation of a disastrous event might be worse for our brains than an actual emergency itself. That's the only way I can comprehend it, but it's not like I've been able to do anything about it.

I no longer consider it normal. And yes, there is some pain in my hands at it's most pronounced. I don't think I've ever been able to tie it to a blood pressure issue though. I'm kind of the opposite of most POTS types anyway, where my blood pressure often increases the more upright I am and drops when lying down.

Uhm...that's exactly what mine have looked like forever. Veins popping out and very pronounced all over backs of my hands, up my arms, sometimes can even see them in the feet. When taking blood, I was always told "you have great veins". Come to think of it, only one doctor (a chiropractor/homeopath) ever really mentioned it, but didn't say it meant anything. I do feel my hands tighten up often and the veins are often more pronounced when that happens. Never knew it was a dysautonomia thing. What can you really do about it though?

Thank you Scout. I've had plenty of MRIs. It's not the procedure that concerns me, it's the potential results or why it was even ordered in the first place. I'm having great difficulty scheduling it anyway. The only place my insurance will cover is quite a ride, wants me there at 9am and doesn't have an opening until March. Needless to say, none of these conditions work.

Melatonin is a God send in helping me sleep. I'm only taking 5 mg per night (and have been on and off for a few years), but trying not to take it every night because I'm not sure of the science behind long term use. I'm not sure if it would help with any of this. Besides, ideally there would be a non-drowsy solution. I already have enough trouble getting up and around.

Do people end up extra fidgety with this as well. As this particular set of symptoms have been really difficult this weekend, I'm realizing that I'm constantly doing something with my arms or hands with all this subtle rocking/bobbing back and forth. Wonder if this is more an adrenaline issue than what some people are talking about here.

The strange thing, which adds to this and that I mentioned in another thread, is that I recently had an echo that the doctor couldn't even read. And it's not even the first time something like that has happened to me. So there must be something going on with blood flow. I just don't know how to tell if these particular issues are connected and I'm not optimisticl the doctors would be able to put it together either.

Thanks Kim. This is what I meant. Perhaps with our circulation issues, lack of blood flow doesn't allow for proper healing in a timely manner and if this might be the case, I might want to avoid either of the options the doctor, who seems outmatched, has given to me as neither seems to be without harm.

I'd like to find more of these supportive people. I seem to have a group that's more tolerative than supportive. When I ask for help, they'll give it. I do feel guilty about the burden I place on people sometimes and sometimes they seem frustrated that I am unable to do help them in return. I get a lot of "all you have to do" because it's a simple thing or something I used to be able to do easily. I've also found myself calling friends less frequently because I want to do something other than complain to them. Lately I'm noticing a lot of friends and family rarely ask how I'm doing anymore or if they do, they'll listen without responding or quickly change the subject. If I try to put myself in a positive mind space and "act" less sick, I'm met with higher expectations. "You're in a better mood so you must feel better" or "you're don't look or sound as bad so you must be able to do (whatever they want done) now". It's incredibly frustrating not only to not be able to do what should be simple tasks, but also to keep having to tell people you can't do them even if you look fine and just did something else and also keep having to explain the same things to them. And I don't blame them either. I never would have been able to understand any of this until it actually happened to me.

For me it's more of a bobbing sensation back and forth, mostly felt whenever I am reclined or lying down with my back pressing against something. It's almost like a beat my body is moving to. Perhaps worse right after sitting down after small exertions. But I always feel like I'm moving subtly, never still. Often feels in tune with the heartbeat, but sometimes more erratic or much faster. The boat analogy is interesting, but I wouldn't describe it as floating, more rocking. I've also gotten the twitches for years. One of my first symptoms. Comes and goes as do the involuntary muscle jerks when lying down. These seem to come in waves and then disappear for long periods of time. Probably worse when stress is worse. I could be wrong, but I believe Parkinsons starts as a tremor or unsteadiness in the extremities?

Two weeks ago, the podiatrist placed me on a course of antibiotics for what very clearly was some kind of infection around the toenail. The drainage cleared up around the third day of the antibiotic. However, there still remains some inflamed redness around the area below and to the right of the nail. It's not incredibly painful, but irritating and does not seem to be healing. Went back to the podiatrist yesterday and like most things I present with to most doctors, he's not sure what's going on. Suggestions were another round of antibiotics or nail removal, neither of which he was confident would actually do anything because the nail itself is fine now and I'd really rather not start building up an antibiotic resistance, not to mention that I often don't handle them well. There's no actual wound. It's just inflamed and red and has been that way for over two weeks now. I'm now wondering if it's a blood flow issue preventing the healing. I know in some sense this sounds strange because when we stand up, our blood generally stays in the lower portion of our bodies. That's part of the problem, but perhaps low blood volume overall is causing the lack of healing here as I'm often reclined on the couch more often than moving around these days. I am not diabetic, but often run into many of the same issues diabetics do. Peripheral Artery Disease frequently comes up on Dr Google (and I'll probably call the cardiologist again to bother her with something completely new), but a lot of it reads as stuff that can seem similar to low blood volume, poor blood flow from dysautonomia/POTs. Anyone? As I told the podiatrist, the main concern is that I'm not sitting here to wait for something to heal for weeks while it's actually a spreading infection, but he said there's nothing to even culture for bacteria anymore, so he doesn't believe that's likely to be the case.

As I had previously mentioned, I didn't even want to know anything about this until my cardiologist had all the results, but I received something in the mail from my the office today and opened it thinking it was some kind of billing, but it was actually the MRI script with a diagnoses of Cardiomyopathy. So, instead of consulting Dr Google, I'll ask for those who might have more experience with these type things here... I guess I have a more specific question now: Can POTS (or any type of autonomic dysfunction) be frequently misdiagnosed or show up as a potential cardiomyopathy on testing, especially if the doctors don't have a lot of experience dealing with these types of things?

No, that is one issue I certainly don't have @KiminOrlando Thanks for the responses. I was hoping that there might be some blood flow issues due to the POTS that might have led to some difficulty. This isn't the first time something like this has happened to me. I had an issue with an ultrasound of my neck once that said I had a 70% blockage, but then the MRA said it was fine. Also remember having an issue with an unclear echo in the past, but I think she just ordered another echo. My cardiologist has changed groups since my last one, so I think every echo I've ever had (three or four of them now) have done in a different place by a different person.

Had an echo a week ago. Expected it to come back with no issues so I can concentrate on all of my issues stemming from autonomic dysfunction. Today, the doctor's assistant calls and says she wants me to get a cardiac MRI. The reason given was that the echo was of poor quality. I did have a scare a few years ago (2015) where an echo showed potential pulmonary hypertension, but that was ruled out with an exceptionally painful catherization. I told my cardiologist I never wanted to hear the PH words again. Part of me doesn't even want to know the reason for this because it'll just increase my anxiety when I was getting it under control this week. I guess my questions are 1) Is echo quality commonly problematic among us? 2) Has anyone else had to do this and there's a chance I'm going to stress the next few weeks over nothing?

The way it's been explained to me is if we can take the emotional charge out of it, refocus thoughts on anticipation and attention, we might be able to "rewire" our system. Not so we're ignoring these symptoms, but so that it somewhat normalizes in this respect. It sounds very difficult to do and I've been unsuccessful so far, but you would still likely notice something that was different than the palpitations you usually feel. But if we're sure that whatever we're dealing isn't cause for concern (AND ONLY IF), then I would view it as a positive if we were somehow able to disregard it when the alternative is the constant mental suffering we endure.

I know he was looking up the medications while I was talking to him, so maybe there's some interaction between the Lexapro and some antibiotics that wouldn't allow for the full effect. Maybe he wouldn't have changed anything if I had been on it for a month or more and it was more ingrained into my system. Gotta say though, not feeling any different four days off it than I was for the 3+ weeks I was on it. For the last few years I've been following a mostly Autoimmune Paleo diet with an occasional dip into non-AIP paleo foods and occasional bouts of weakness beyond that when I'm really hungry and don't have better alternatives. But like I said, I've always had a pretty active bladder and the movie experience isn't the norm, but the most extreme, which I feel had more to do with those new reclining movie seats.