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 😆