MTRJ75

Thanks Lieze. I always keep water by the bed, but with the Sjogren's, that's not nearly enough to help immediately. And although I wouldn't always call it nausea, I'll also blame the dryness for not being able to eat for at least an hour after waking. Having ready some kind of drink with electrolytes already in it ready throughout the night is a great idea though.

Thanks Pistol. I've had really rough environmental allergies for around 20 years. I tried the claritin thing to no avail for about six months a couple of years ago. I've brought up Mast Cell Activation Syndrome with a couple of doctors and nobody seems to think anything of it. They do say that antihistamines could make the Sjogren's symptoms worse. As I understand it, bloodwork for Sjogren's can show up 10 years before any symptoms, 20 years after, or not at all, so it's kind of frustrating that Rheumys sill treat only via bloodwork and don't do a more complex investigation when there's obviously something going on. I guess I shouldn't speak for all of them though.

This is so true. I've gone the last few years believing that all my autoimmune issues were triggered by the microbiome. If fact, I blamed years of useless PPIs for an inability to properly digest. I've always been trying to fix the gut, fix the gut. Now I'm learning that maybe it's the other way around with the nervous system controlling the digestive system (along with other systems) as you say.

Yes. I first went to a rheumy about five years ago. He said I didn't show up for anything on blood work. I can't help you. Went to another one at Rutgers last year. on the advice of cardiologist and neuro. He basically told me the same thing after extensive bloodwork. Said I can be treated symptomatically for Sjogren's, but there's absolutely no reason for me to be seeing a rheumy at this point. Both the cardiologist and neurologist were quite frustrated by this to say the least. So both said there's nothing to treat without bloodwork, although the eye doctor has run positive Schirmer's tests (for eye dryness). I'm absolutely positive there's a dysautonomia/Sjogren's connection in my case because the drier my throat/esophagus got, the worse the autonomic symptoms got, so one is certainly often triggering the other. I just can't find a doctor who understands how to handle this.

Thank you Yogini. My BP was 115/76 during this episode last night. It used to run a bit high, then became a bit of a roller coaster when the dysautonomia hit. Perhaps the CBD oil (along with low dose beta blocker) got that under control. I asked my primary about CBD when I first started with it and his exact response was "I don't deal with the pot". My neuro is all for it though. My routine upon waking starts with an electrolyte drink and then holding off on the sodium chloride tablet till afternoon now. I make sure to get a lot of quality salt in my diet too. I probably should have been more clear that this occurred upon waking up mid-dream in the middle of the night this time. That's not often how or when these symptoms hit me. They're worse after waking at my normal time most mornings or following (but not usually during) any prolonged, even slight physical exertion. Like the worse of it will generally wait until I sit back down and try to relax to hit me. Forgot to mention that previous cardiac work sometimes comes back okay, sometimes things are a little off, but not enough to cause any concern or further investigation. The worst thing I had to go through was catherization for suspected Pulmonary Hypertension. The cardiologist is probably saving her own skin by never giving me a clear answer when I ask when I need to go to the ER. The answer is always "if you feel poorly enough".

Thank you for the response. I'm sorry you have to deal with most of this too. I do seem to get more side effects than benefits from most medications (it's been suggested it's my MTHFR gene mutation, something to do with methylation/metabolism), but I've had all those things (except Brady - have only experienced this once or twice) before starting the meds. I've been pushing for LDN as my next medication trial, but I'm not seeing any significant change good or bad from the Traz. Sleeping the same as I was on melatonin most nights. Hoping we're both able to find some relief.

I've been trying to get someone to understand that my cardiac symptoms are related to digest issues (trapped gas in esophagus, hiatal hernia). PPIs have never worked for me though. Before I got hammered with all these autonomic and AI issues and it was just reflux, there was a chiropractor/nutritionist, who taught me how to eat (no white flour, dairy, less sugar) and everything went away for a year before the AI problems returning and just about a couple of years ago the reflux after the death of a pet. Anyway, just recently went back to the gastro and he suggested something called Gaviscon (sp?) because it doesn't block acid, but coats the opening of the esophgaus so there's no backup. He also said a lot of his patients have success with aloe vera juice, but because I'm an atypical case (I don't normally get the typical acid backup and no issues lying down, but lots of gas or pressure down the esophagus with tons of belching) it's going to be more experimentation. Maybe something he tells me can help some of you. I'm scheduled for an endo next week, which I actually have concerns about because they won't let me take my Sjogren's meds that morning and I know I'm going to be dehydrated.

Unfortunately, I suffer a lot of the same symptoms that many of you do. For me, the palpitations are generally one of the worse thing mentally and increasing PVCs caused me to make my first post here months ago. But I also seem to have a symptom set that I don't read a lot about in other people, not that I'd want any of you to have these horrid experiences. I seem to have a lot more symptoms even while I'm sitting or lying down, which I know isn't really consistent with a lot of people with POTS like symptoms. Last night, I ran into a combination of symptoms that is not very infrequent to me, but doesn't always hit me all at the same time. I laid there in bed for several hours, debating the emergency room, which I look to avoid at all costs because I generally get a speech about anxiety. Since a lot of these symptoms are classic heart attack symptoms, I know they're not because I have them all so frequently, but I only have to be wrong once, right? So I awoke in the middle of the dream at 4am because I heard the dog yelping (poor guy has some skin allergies and must have been scratching himself in a painful spot). Immediately, I had this burning, tingling, buzzing sensation with a muscle weakness all throughout my chest, down my arms, and the inside of my legs to my feet. I often get this upon waking and it can be really bad and take hours to get rid of, but sometimes it will disappear within an hour of waking. The chest discomfort is always the most concerning. Profuse sweating. This has become more frequent recently. It can be the result of minimal physical activity, but not during...it starts afterward, when I sit back down. In fact, I can often feel this coming on and know that changing positions, often just leaning back or sometimes leaning forward to write something will result in a drenching sweat. This happened upon waking last night amid the pain and discomfort. I can be drenched instantly and it can come and go for hours. It can feel like my body heating up or be a cold sweat and alternate between both. A common co-effect of the sweating is my digestive tract feeling the immediate need to empty itself. This is the closest feeling a get to a panic attack. It's certainly an activated fight or flight reaction and almost always paired with the sweating. Palpitations - I know a lot of you get these. I get all three kinds (racing, skipping, pounding). Actually, the skipping has been absent the last few days and I've been thrilled about it. The racing I don't often get much anymore, but with these attacks I certainly get not only the postural tachycardia (heart rate was up to 130-140 just standing to get a drink), but it was constantly bouncing between 70-90 while lying down (even with beta blocker) with my blood oxygen showing between 91-94 while lying down and trying to relax. The heart pounding and feeling like I'm bouncing in my bed is a constant feature and you can visibly see it in my stomach. I can actually feel almost every beat sometimes just lying there and can tell when my rate is speeding up and slowing down for hours. I took a sodium chloride tablet with the water when I woke (I have Sjogrens and thought I might be dehydrated) and then the nausea started. As you can imagine, this entire set of symptoms crashing me at once is often very disconcerting. There's only so much one can deal with. The neurologist has recently started me on Trazodone which I take at bed time (but I don't think it's been doing anything after two months). I had already taken CBD oil at bed time, but took 10 more drops upon waking four and a half hours later. An hour after waking, I took another small dose of beta blocker and then my Sjogrens medication around 7-8 am (a bit earlier than usual). After I was sure I was going to miss the echocardiagram I'd waited two months for, I took half a .25 xanax. I hate doing that and have a bottle of 10 that's lasted since January, but it usually works to at least calm my nervous system from the constant buzz and allow me to nap for a couple of hours. This ended up a much larger post than I expected and like I said, it's odd, I've been so happy my PVCs and reflux have calmed down the last few days, but then I always seem to get hit with the above set of symptoms out of nowhere (though I can sometimes trigger the post-exertional sweat). There's a general weakness feeling that comes across my chest muscles, like I can even hold myself up when this hits hardest too. I'm just running out of answers. The neurologist is not an autonomic specialist, but due to insurance issues, he's trying and is all I have. His plan is to cycle through different medications, but both he and the cardiologist (who has autonomic issues herself) say I'm a unique case. My primary doctor just wants to give me anti-anxiety meds. I've only had him for a year or so (again, insurance issues - been through four primaries in five years) and came to him with so much going on that it must anxiety. I had to explain POTS and dysautonmia to him a few months back. I don't blame anyone for not wanting to read all this, but I'm glad I at least got it all out. I really hope nobody else is suffering like, but if there are people who deal with anything like this and have found any direction or answers, any responses would be appreciated.

A short update on this with the even shorter version on the bottom: I had begun Fludrocortisone/Florinef at the smallest dose a few weeks before all this began. We (the cardiologist & I) thought it might be a good idea to come off it for a while. Two days after stopping the medication, the night & morning skips stopped. Over the next week, I still have a couple days where I might have felt 10 total. I'm positive the medication contributed either directly or perhaps by causing gastric distress/some bloating, which I noted as a minor symptom. So I cancelled the Holter, which was good because I didn't have any events the day I was supposed to wear it. However, woke up Friday morning with a couple of skips and then that night and yesterday morning they were back again. A little more forceful last night (Saturday). I would still call it dozens rather than hundreds like in my original post. Now I'm wondering if these have been caused by gastric issues too...or if the ectopics are the ones causing the gastric issues because I can have the gastro stuff without ectopics, but the ectopics are always followed by a lot of burping and odd upper digestive "noises". I'm now questioning which is the cause of which. Anyway, none this morning or tonight so far. Let's hope it continues (but I did have the longest case of hiccups I've ever had tonight). Considering I can only get a single day Holter from insurance it would probably be the worst thing if they were occurring frequently and unpredictably now. I see the cardiologist in a month again, so we'll see if I can hold off on bothering here again until then. The super short version: It may have been the Florinef causing gastric issues, which in turn caused the heartbeat issues.

Thanks @Paula L I have wondered if this might be an issue. My diet has been nearly perfectly Paleo for years now and I can't associate symptoms with any specific foods or even eating at all, but I haven't tried FODMAP yet. Also, whenever I suspect the palpitations might be esophagus related, I'm still feeling the gap in my pulse either in my wrist or neck. That's a good thing @Pistol and I think I remember it picking up some stuff I didn't even not last time. Insurance won't cover anything more than a single, simple day Holter at this point. I don't remember it even having a screen. For sure, I'd rather over-note than under-note my symptoms while I'm wearing the thing.

Thank you Pistol. I wish the doctor could have answered the question the same way you did. I may have gained a few hours sleep if she had. That's another thing I'm going to have to ask. I remember having to note every incident, but this time around I may be clicking several hundred times. And if I'm lucky enough to sleep that night, I'll surely miss a bunch.

Hi all, As this is my first introduction to the community, a small bit of background (it's not all necessary reading for my ultimate concern, but I like to give all potentially relevant information): - 44 M - First started experiencing inflammatory/AI symptoms end of 2012/start of 2013. Turned out to be Sjogren's, which I'm on medication for, but still not properly diagnosed and accepted by all DRs I see (and there have been dozens over the last six years) due to still not showing up for bloodwork. - First started experiencing cardiac symptoms (tachy) with a couple of ER visits in the first half of 2017. The first was put down to dehydration after the last night of drinking for me. - Last year, I was forced to quit exercising because I was shaking/trembling after every workout, even after cutting workouts I'd been doing for years in half. Also experienced skipped heart beats after workouts or even after mowing the lawn. They were always activity/exertion based and I almost always felt a tug in my throat before they occurred, which I associated with the Sjogren's (dryness), though I was never sure how and couldn't get any doctors to confirm. - Finally convinced the cardio to do a stress test (I'd had one in the past that came back questionable, but eventually a Cardiac MRI and several other tests cleared me). Even before we started, hooked up to all the wires, she walked in the room, and told me as soon as I stood up, my heartbeat went to 130. My as needed beta-blocker became my daily medication and since then, I've had several dips and spikes in BP and heart rate with a few more ER visits, but at least the heart "rate" is stable now. - In October, I had my first real complete autonomic crash. I was sitting on there typing for work (thankfully able to work from home) and I couldn't hold my arms up any longer. Almost instantly, I was nauseous and drenched in sweat and could barely sit, let alone stand. I vomited several times that night, sure I was dying. This happened several times over the next week whenever I tried to even sit up for too long. - I've improved quite a bit in that aspect since then, though did have another crash in December. Can get up and walk around and take the dog out, do minor things, but still pretty much house bound and need to limit my standing physical activity on a daily basis or pay the consequences. The interesting thing about all this though, is once I was knocked off my feet, the ectopics immediately went away. Makes some sense because I had rarely gotten them just sitting or lying down. On and off in my journey I've had various sleep problems too. Mornings have been pretty vicious for the last five or six years, but I had mostly been getting to sleep okay lately. If I had a disturbance, it would last a couple of miserable nights, but mostly return to normal, as I've taken to meditation and stress elimination practices. However, a couple of weeks ago, I started trembling (throat and chest) while lying down, which set off the pounding heart beat. These are all common symptoms for me and basically my most concerning ones over the last year or so. This set off a several night stretch with the same event for about a week. The trembles have ceased (at least upon attempting to sleep) after that week, but what started happening about half way through (actually exactly on 6/7, so 12 days ago today) and has occurred every single night since...the skipped heart beats/ectopics are back. They now come on every single night somewhere between 8-10 pm, get worse when I lie down and last for about an hour or two after waking. They go away mostly during the day or at least lessen, but then come back now every single night. Lying down, I'll now get them around every minute through the night. If I lie down during the day, I don't get them usually. Yet, they will start every single night like clockwork and get worse when I go to bed and I absolutely can't figure this out. I'm scheduled for a holter (have done a couple in the past) at some point in the next week and have asked for another echo, but the cardiologist doesn't seem too concerned (of course not, it's not happening to her). After all that rambling, my current concerns are (yes, I've asked the doctors too, but without any answers): - Considering it's now very difficult to get blood out of me and the cardiologist suspects I have low blood volume issues now, can this be an issue of not enough blood reaching my heart? (The cardiologist says that's less likely lying down than standing up, but I'm still confused.) - If this is just another symptom of my autonomic nervous system acting out, might it simply randomly decide it doesn't want my heart to beat at all anymore? Has anyone even ever heard of that happening with this condition? - At least when they were happening in the past, I'd convinced myself I was irritating my vagus nerve. Can I be doing this lying down, through digestive issues? (I do often feel trapped gas in the chest when these come on, but which is the cause of which?) - Or is it simply just another harmless learned response by my broken nervous system that be unlearned or may just go away as quickly as it arrived? To be honest, the more of these I have, the less each individual one seems to panic me, but I have to admit the circumstances and consistence of these current events kind of has me freaked out because I can't figure them out. Thanks, Matt