htberg

That is interesting. I have bradycardia--resting heart rate of 51. It goes down to 38 periodically. I wonder if both bradycardia and tachycardia contribute to hyper-inflated lungs due to the poor oxygenation in either extreme.

Yes, but I also have asthma and was a preemie and born with 20% lung capacity.

This happens to me too! Heart rate does not increase, but breathing rate massively increases. I just did an overnight oximetry test but it really didn't lead to much other than I am in bradycardia for 4+ out of my 5 hours of sleep and I have many awakenings. My pulmonologist said maybe its GERD but I don't think so. I suspect its somehow related to the dysautonomia. Please keep us updated if you figure it out.

I had this done twice and years ago too. Mine were both swallow tests. So they put barium on a graham cracker, then mixed in applesauce, etc., so not sure its exactly the same test as you are getting but I didn't have any issues with the barium and the whole test was quick--maybe 10 minutes max.

My pulmonologist wants me to try it. My resting HR is 52 daytime and low 40s night time. My BP is also low 90/50. I voiced the same concerns you have and she said it only stops the tachycardia (puts a cap on the high number) and doesn't reduce the bradycardia to a lower number. When I stand too long w/out movement--i.e. grocery store lines, my BP drops and HR rapidly increases out of proportion. I am still too scared to try it b/c at this point I just wear an abdominal binder or a TENS unit and race up and down the aisles until there are very few in line or do pick up. If the symptoms become more frequent or intolerable and I decide to try it I will consult w/a cardiologist first. Let me know what happens if you try it.

I was on the wait list for a year. Very impressed with my first consultation appt. Dr. B was very intelligent and enthusiastic, made some promises to get to the bottom of my issues. Then the wrong MRI was ordered (and never corrected) and then when I 'passed' all autonomic tests (which I had previously failed at Mayo and Northwestern), I was dismissed and there was no follow thru. I hope you have better luck.

I take both and my BP is 90/60. I take the gummy form so then I can split it up during the day and not take them at the same time. I haven't had it negatively impact my already low BP.

I use it when needing to stand for long periods without much movement and it does help. There are a few different types with varying types of compression.

Mine helps keep my BP up when I"m standing (and not moving around a lot--i.e. grocery store lines) when there is no option to sit or if I'll look crazy jumping or running in place. They are tight. I have two kinds. I can't wear them for long periods of time--b/c they are uncomfortable and will slow digestion.

I have not. Thank you for the referral.

I went to Mayo in MN. It was a well run program and very inexpensive, but they could not figure out my symptoms or a diagnosis at that time (2008). I passed some of the tests like tilt table and failed others like the sweat test. They offered no referrals. I was 85 lbs at the time b/c I could not swallow. Many of my physicians are trying to get me to go back since I still have no real diagnosis even though it is in the dysautonomia family or go somewhere and they are suggesting Vanderbilt or Cleveland. Did you go somewhere and if so, what did you find out?

My heart rate is also low--mostly 51, but can go lower. Does not increase much even with caffeine or exercise. I also experience the difficulty breathing at times--I do have asthma but it is well-managed. I feel like it is part of the autonomic piece that is messed up. That i have to remember to breathe and consciously do it versus it happening unconsciously. I am on a lot of calcium too and I have hypercalciuria...never heard of that being related.

Love this. Thank you!

Mine is low too and gets too low if I stand for too long without moving or am not moving around much (long car rides). Also, oddly, it always gets low at the grocery store. I've had to start racing up and down the aisles to avoid passing out. I've also found there's a pressure spot on the back of my neck that I pinch that also helps. Its not as noticeable to others, like if I'm sitting in a work meeting--don't want to get up and do jumping jacks. Doctors for me just say "Don't you feel like passing out?" when it registers 80/50, but I usually don't have symptoms until it gets lower than that. Hydrating does help.

Part of my dysautonomia includes urinary retention and having to self-cath. They tested my pudendal nerve too. Although I have near constant UTIs (12 per year), the pudendal nerve for me only acts up on occasion. It is very painful when it does. I'm sorry you are going through this--can't imagine that pain long term or daily. I did some pelvic/urinary/bowel physical therapy for awhile. It did not work for me b/c the issues were determined to be related to dysautonomia (and neurological) versus other reasons but it might be worth looking in to. I know we can get desperate for any chance at a more normal and functional life and try almost anything for some relief.