JennKay

@Sarah Tee -- Thanks for the link! I will watch and report back if it helps. I have always been more symptomatic at night, but no one has come up with explanation. My palpitations increase at night on the Holters, my weird tachycardia episodes mostly happen at night, and I don't sleep well. I still think my parasympathetic side is the wonky one!

Hi everyone -- I've been dealing with my dysautonomia for the nearly the last 3 years, and things have slowly improved with time as I learn to manage my symptoms, but we still don't know the root cause of it. Anyway, over the last few months I've worn my Garmin to sleep and noticed a weird trend. At night, when I am sleeping, my respiration rate increases pretty dramatically relative to when I'm awake. It is almost twice the rate as my waking respiration rate. I've mentioned this to my neurologist and we are going to do an overnight sleep study, but I was curious if any of you have noticed this trend as well and what it might mean. I assume it has something to do with my dysautonomia, but now I'm curious if it is potentially responsible for my problems. My sleep has improved relative to when I was first diagnosed, but I never sleep through the night anymore and sometimes wake a handful of times (what feels like once an hour) while I toss and turn. I came to accept this as my new normal, but now I'm wondering if this could be obstructive or central sleep apnea. I've seen in the archives that some people see an improvement in symptoms with CPAP treatment. If anyone has experience something similar and was diagnosed with a sleep disorder, please let me know your thoughts!

@MikeO -- yes!!!! I can eat the whole pan by myself 😁

@MikeO -- Good thought. I Didn't think about that. B/w this bug and spring allergies, who knows what is going on!!

Hi all -- From what I can tell, a normal person's BP will often increase with illness. For me, I do the opposite, my BP tanks. I have been doing good overall with tons of salt and compression tights (was able to wean off Florinef), but whatever virus I have at the moment has dropped my BP again. Tested negative for covid19, so maybe it's the flu. Does anyone have an explanation for this, or is this autonomic dysfunction and our bodies just do the opposite of normal most of the time?! Thanks!

@Pistol -- I figured it was related. I must be in a perpetual flare! I will say that I just discovered Vitassium and that has helped tremendously with my BP. It is amazing how "normal" BP and blood flow to the brain makes you feel! Still need to figure out my other random issues I guess... @MikeO -- on no!! My husband and I had those exact symptoms around Thanksgiving. Took us both down at the same time. Lasted about 24 hrs, but took a week for my appetite to return. Didn't eat much during that time except for bland carbs.

@Horizons1 -- Yes, it is my understanding that PVCs are associated with autonomic dysfunction. That is crazy that you have experienced them your whole life! Now that I know what a PVC feels like, I do remember having them before my symptoms fully appeared, but they were never this frequent. Did you play sports as a kid? I suspect I had this autonomic imbalance most of my life, but b/c I played sports (volleyball) and was active (running and cycling) until I had kids I think this "managed" my symptoms and I didn't know it. I believe exercise, particularly cardio, expands blood volume and I feel so much better on salt tablets and electrolytes. So, I think my previously active lifestyle kept things at bay until I had kids and no longer had the time or energy to keep pursuing things. I also feel better now when I "exercise," but this is no where near my previous level of activity. My fave at the moment are what I call "baby pilates" with resistant bands at home. You can do a lot with resistant bands and they help build muscle tone. I got mine off Amazon for $15.

@MikeO -- I get emotional when watching random shows too. Been like that since I was a kid! No, I don't remember getting a runny nose with the crying. Just the tears. Today I did have a weird episode though, not related to crying. I was completely fine, then out of the blue I felt super nauseous, my mouth started watering like when you are about to vomit, was pretty sure it was going to happen, then it passed. This was a first for me! I figure it is some sort of vasovagal response. I haven't been randomly nauseous like that since I was preggers and I shouldn't be preggers now!

@MikeO -- Haha! I wish that was the situation!!

@Horizons1 -- Hang in there!! I too experience a range of symptoms that no one can really put a finger on. I also don't have the typical POTS HR changes upon standing, but I will get lightheaded if I'm on my feet for prolonged periods of time. My most annoying dysautonomia symptom is PVCs, they drive me crazy. Sometimes I feel like they are under control, then they reappear. Like one of the other members said, some of us know our triggers and some of us can't always figure it out. We are a mixed bag! And, to echo what others have said, it isn't all in your head -- you know something is off. Hopefully your new cardio will be helpful, and if not, then keep seeking help and guidance elsewhere! People look at me and think I'm fine, but they aren't in my body dealing with my symptoms. Keep pushing forward 🙂

@Grammylm -- sorry to hear about your relapse. That stinks and is so frustrating!! I also struggle to keep my BP "normal" and just discovered Vitassium. Have you tried salt tablets yet? I also use Florinef, but honestly, I think Vitassium works better. I also use LMNT, which is an electrolyte packet. It is marketed as keto friendly, which is great b/c it doesn't mess with my blood sugar. Those two, Vitassium and LMNT, are the best electrolytes I've found for me...and I've tried a lot at this point. Finally, I wear waist high compression tights ever day, 20-30mmHg. I put them on when I wake and don't take them off till I get ready for bed at night. I like the Jomi brand you can buy on Amazon -- they aren't "grandma" tights and come in different colors, with and without toes, etc. Oh, and since it is winter in my area I've been sipping on broth when I get tired of electrolytes and want something warm. There are a lot of great flavors and types you can get at the grocery store - bone broth, flavored broth, etc. Can make your own broth too!

@Pistol -- No, it isn't like a sobbing cry, just crying for no reason. Like my eyes will just start releasing tears. Thanks to the others that have responded too! I guess this isn't unusual in dysautonomia. @MomtoGiuliana -- I too become less emotionally stable in flares. So frustrating!!

Good evening all! Was wondering if anyone deals with this symptom. Does anyone else experience random, unprovoked crying episodes? I've had this happen too many times to count since I became symptomatic. It isn't bothersome, but I do find it strange. It's like a full on cry, but I'm not actually crying. It is more like what happens when I'm cutting an onion but without the burning sensation. I'm guessing this is some form of autonomic dysfunction. Does anyone know what this is about? It usually happens to me when I go from standing to sitting. Other than that, I don't think I can pinpoint a pattern or trigger. I tried searching the archives but I don't know if I'm using the right term for the symptom. I tried searching "random crying" 🤣 Thanks!!

@Misty4280 -- Sorry to hear about your situation and not feeling well. Your HR seems pretty high for just being seated. Do you usually take meds to help manage your symptoms? Maybe speak to your doctor about trying a beta blocker or Corlanor to help get things back under control? And yes, when I get sick my symptoms can be all over the place. Same when I over do things with my kids or work.

@MikeO -- That article is interesting! I still have no clue, but it seems plausible. I bet there are a number of different things going on, which is super frustrating b/c all the variables keep changing. That is how I feel about my symptoms most of the time anyway 😆

@MikeO -- I see. Well, if this happens in pre-diabetics then I guess it jives with your experience. I still think it is weird that your A1c is normal. Couldn't all of this also suggest that your is producing lower amounts of insulin (maybe b/c of age?) but that you are still responsive to that insulin? But, I'm not a diabetes expert and literally have no experience with this, so I really have no clue! @Pistol -- I agree! I was surprised and reassured when I read in a review that insulin lowers plasma potassium levels. I thought of all the people on here that struggle with tachycardia and palpitations after eating, including myself, and thought there may be a correlation. I also find it interesting that many people on here post that they feel better when eating a more restrictive, low-glycemic index/paleo style diet. I know that any change to our systems (like eating) can cause issues, but I wonder how many of us are dealing with subclinical electrolyte imbalances -- like at levels that doctors wouldn't treat. My potassium levels run in the low 4s, but after starting the potassium supplement my palpitations have nearly disappeared and my GI symptoms are gone. I've been dealing with both for 1.5 years non-stop. I wish I would have been advised to try potassium sooner.

@MikeO -- I have no clue, but I was thinking about your situation the other day and was wondering if your A1c was normal or elevated. To me, if your A1c is normal, then your body is responding to insulin correctly. You wouldn't have normal A1c levels if you were insulin resistant. I can't imagine how a normal A1c coexists with insulin resistance. I have been taking a potassium supplement for the last couple of weeks and this seems to have made the biggest impact on my PVCsl burden -- more than any other thing I've tried. They are nearly gone and I only feel a handful a day instead of thousands a day. So, I've been reading up on potassium physiology (which gets me back to your situation) and did you know that insulin stimulates potassium to shift into our cells, lowering the plasma levels? I think it does this with the anticipation that the potassium we absorb from food will replace this deficit -- like it occurs to prevent hyperkalemia. Additionally, low potassium can cause low blood pressure. Do you think this could be why you get symptomatic after eating? Maybe your body is actually quite sensitive to insulin? I'm beginning to suspect that this intracellular shift in potassium is why my heart races sometimes after eating, particularly when I eat a carb or sugar heavy meal. I'm thinking the extra insulin temporarily lowers my potassium causing tachycardia and palpitations. Could you try a potassium supplement (maybe with magnesium) before a meal to see if this helps?

@MikeO -- That is amazing that you will finally be able to get some data on your blood sugar situation. Coincidentally, I was also able to obtain a CGM this past week and I am finding the trends super interesting. I am not pre-diabetic (that I am aware of anyways...) and since my symptoms started in June 2021 I have become much more sensitive to food - eating, not eating, eating too much sugar, etc. Too much sugar, for me, causes an increase in PVCs and tachycardia. I wasn't sensitive like this pre-June 2021. It has only been a few days, but from what I can see, I seem to be having periods of hypoglycemia in the early morning hours b/w 3-5am. I don't think it is a coincidence that this is the time of night where I wake and often have an elevated HR and hard time falling back to sleep. It's like someone woke me from a deep peaceful sleep and its so disturbing. I'm guessing I'm having an adrenaline surge to counteract the low blood sugar. After I noticed it the first night, I drank coconut water right before bed (like 5 mins before I brushed my teeth) and I didn't get hypoglycemic and I slept w/o the 3-5am adrenaline rush. The next night I had a snack of roasted peanuts with a banana about an hour before bed, but I got hypoglycemic and woke with an elevated HR. I think I am going to try the coconut water right before bed again tonight to see what happens. I've also noticed that meals with lots of good fats and proteins make me less symptomatic post-meal -- no tachycardia and minimal PVCs -- compared to meals with protein + carbs, like any amount of carbs sets of my heart. I may be transitioning to a keto/paleo style diet here pretty soon... At this point, I am willing to eat the same exact thing EVERY SINGLE DAY if this would make my PVCs stop!!

Hi all -- Wanted to share this new article released in Nature Cardiovascular Research. https://www.nature.com/articles/s44161-022-00177-8 So, if you feel that your symptoms increased after vaccination, or were brought to surface after vaccination, you are not alone. The numbers and odds ratios look convincing, but there needs to be additional analyses in other populations to confirm the association. If these findings are replicated, hopefully this will spur research into the mechanism underlying the association.

Well, now my BP is back to its measly 95/65. That lasted about 2 hrs! I wonder what would have happened if I took the full 30mg dose 😆 So weird!!

OK -- I was finally brave enough to try the diltiazem b/c the PVCs continue to be crazy. I only took half the 30mg tablet (non-extended release; approved by pharmacist and doctor) b/c I am super sensitive to all meds and, crazy enough, my systolic BP is about 25 points higher than it was yesterday. Yesterday my BP was running 95/65 and today, after taking the diltiazem, it is running about 120/75. Has anyone else experienced this with diltiazem or another CCB? I'm a little bit confused, although I thought I remember reading some where that the immediate release CCB tablets sometimes increase sympathetic activity while the extended release lower it. I do have cold extremities at the moment and this isn't a normal symptom for me. It has been about 1.5 hrs since I took my first dose. Not much happening for the PVCs, but I'm guessing that is b/c I took half a tablet.

@DysautonmiaMatt -- my labs included the regular plasma Mg, but it's ok. I'm not going to ask my EP for another set of labs. I will ask him about the potassium supplement though. Right now he is OK with me taking an over the counter 2.5mEq potassium tablet 2x per day. I will ask if he can prescribe me something.

@MikeO and @RecipeForDisaster -- thanks for sharing your experiences! I think I might give a CCB a try. I saw my EP today, which is why I asked about the CCB here, and he said he had no problem letting me test it out. If it doesnt work then I can just stick with my current routine...or maybe consider flecainide if I get super desperate... @RecipeForDisaster -- what dose of diltiazem did you try? My EP prescribed the same one. Not sure the dose yet. Will pick up the prescription tomorrow.

Hi everyone -- I'm still struggling with PVCs. At least now I will have weeks where I only notice a handful a day, but then they inevitably return and I will have a PVC once every 5-10 beats for hours and sometimes days. Which is sooooo frustrating! I've tried 4 beta blockers (metroprolol, atenolol, carvedilol, and propranolol), none of which have eliminated the PVCs. I'm currently on propranolol b/c it is the one I tolerate the best. I'm taking florinef (0.1mg total per day) but my potassium is fine -- the labs that were run yesterday showed my potassium level at 4.5, which is the highest reading I've ever seen for me. All the coconut water and bananas have been doing their job at keeping my potassium levels up. My magnesium is also fine and is in the middle of the "normal" range. Anyway, my question to the group is -- do any of you take a calcium channel blocker (CCB) for PVCs, and if so, how well does it work for you and did you "fail" on beta blockers previously? I've been offered flecainide, but I'm hesitant to try it b/c of the potential side effects and would like to potentially try a CCB first. Thanks!!

@Dieteid -- I'm also sorry to hear that you have been through so much in your life! I haven't been dealing with things as long as you have, but I've definitely had times when I was super depressed and wasn't sure how things would be going forward. I found that therapy helped me process a lot of what I am/was dealing with -- I am super sensitive to medications and preferred not to try the SSRI that one doctor prescribed me. Therapy has helped me the most with the fear of the unknown.