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About htberg

  • Birthday 03/21/1969

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. I have not. Thank you for the referral.
  6. 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?
  7. 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.
  8. 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.
  9. 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.
  10. I went to a Mayo (not FL) twice and while I loved that everything was under one roof and the specialists talked to each other, I was not given any answers for why this happened (geneticist didn't feel it was worth doing any genetic testing), how to prevent it from getting worse (motility--bladder, bowel, esophagus; very low heart rate, inability to sweat, low BP), nor any referrals for specialists in my area. They basically said, "Go find someone in your area that knows about dysautonomia and autonomic neuropathy." Well, haven't found anyone yet and that was 9 years ago. I hope by now they have a referral list to offer their patients. This is a difficult condition to manage on your own.
  11. This has happened to me more than once unfortunately (and 2 days ago so I'm glad for your post). I am chronically constipated--started at birth and have always been on laxatives, enemas, prune juice, etc., although this part (accidents) just started about a year ago and fortunately only a handful of times. Part of my dysautonomia is neurogenic bladder (no urge to urinate unless a UTI, have to self-cath) so I was hoping it didn't mean that my bowels that are clearly shut down and the muscles don't coordinate to push, now aren't affecting my rectum so I can't feel it. That was the odd part--didn't feel a leak and didn't feel it afterwards either. I go to cath and then realize there is some solid stool in my undies. Very embarrassing. I haven't gone back to my GI to ask and don't presently have a neurologist and I don't have MCAS and to my knowledge no seizures.
  12. I had the 30 day monitor. I had a button to push when I felt like passing out. My heart rate goes very slow and sometimes the dysautonomia just forgets to keep my heart going and I have to do something to get it to jump start again. It constantly recorded but paid special attention to when I pushed the button and at times it went off on its own like when my heart rate went below 40. It was not really a pain to wear other than the sticky pads so I had to switch to non-allergenic ones. It did seem to be based on my bill that I was charged for every time I pushed the button along with the standard 30-day rate and you get charged for anything that needs to be interpreted. Several times I pushed it said I was fine so I'm not sure how much I really learned from it.
  13. I've had a laparoscopy for endometriosis. I was so happy I did it--I could only stand 20 minutes at a time by then the pain was so bad and my first surgeon canceled my surgery b/c she was afraid of the dysautonomia and me coding on the table. I found another surgeon and it went very well. I did not have any rectal bleeding, but a host of other issues. I was supposed to be off work 2.5 weeks and was off 2.5 months. They told me not to expect a period for a few months (b/c I also had a D&C, hysteroscopy, cyst and fibroid removal, appendectomy) but since I've always been a 2x/month cycler, I got it in 2 weeks anyway.
  14. I have bradycardia. My cardiologist is not concerned until my heartrate goes to 39, despite feeling faint at 50. It goes so low at the grocery store when i stand and not move, that i have to go off hours and race through the aisles. I always chew gum and sometimes start doing stretches and jumping in the aisles to get my heartrate up. Sugar helps too so i always carry some type of chocolate or candy item with me as a preventative. I also squeeze the back of my neck. Not sure how i figured that out but it helps keep me from fainting.
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