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Everything posted by htberg

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Sorry for the excessive re-posts--it kept giving me an error telling me to wait 14 seconds to submit b/c there were too many new posts? So I didn't think it went through.
  10. I have asthma too and had my wisdom teeth removed. I had the twilight sleep they use in the doctors office. I was not diagnosed with dysautonomia at that time yet, but have had surgeries since and I just let them know. I also react to the epi at the dentist's office and he always blamed it on anxiety and tells me to breathe through it, which never works (b/c its not anxiety). I never even thought it could be the dysautonomia. Thanks for the tip--I will make sure to let him know that.
  11. My bladder and bowel issues are related to my diagnosis of dysautonomia. For the last 9 years I've had to self-cath and use multiple means to defecate. I tried bladder physical therapy and it was not related to pelvic floor muscles for me, although i have retention, not incontinence.
  12. I had the flu shot once and was dizzy for 2 weeks. They even split the dose--gave me half the injection one week, the other half the following week (this was way before i was diagnosed with dysautonomia and thus, didn't have many signs). I also go the pneumonia shot last year and i ended up getting cellulitis in my arm w/in 12 hours. Not sure that had anything to do w/the dysautonomia but I decided to try it since i was unwilling to try the flu shot again. It was more of a 'test' for me.
  13. Thanks. That's quite interesting. I might look into IgG testing since I'm not getting answers anywhere else. I had food allergy testing when I was at Mayo 9 years ago and that was all okay, but previous to that when i was in college (many many years ago) I only had about 3 foods i didn't react to.
  14. Went to a rheumatologist for joint paint that I've been having for over a year now. She said the large joint pain was due to Cipro (which i had been on 6x in 2 years for UTIs and it has a black box warning), but seemed to dismiss the small joint pain (fingers, thumbs, elbows) as dysautonomia. I was diagnosed with dysautonomia in 2008 and I've never heard any physician tell me about pain associated with it. The rheumatologist said that nerve pain (shooting, searing) is common with dysautonomia. I don't have that type of pain for one and i question her diagnosis and if she was just being dismissive. She further said my pain wasn't that bad if i wasn't taking meds (I've been told by several physicians that i have a high pain tolerance and b/c i can't swallow pills or food b/c of the dysautonomia and have odd scary reactions, i just use alternative things like heat, ice pack, etc,). She asked me at the end if i wanted meds like Lyrica or wanted to 'suck it up.' Curious if others have joint pain and if so what it feels like or what others have been told about pain with dysautonomia. Thanks!
  15. This is happening to me right now. I was on Cipro 4x last year and got joint pain. While the rheumatologist thinks its part of the dysautonomia citing neuropathic pain something or other, i only had 3 shooting pains and the rest are all chronic achiness. This has been going on for 9 months w/out full resolve of the symptoms--got up to 11 joints. I'm so glad this article came out b/c my endocrinologist, urologist and primary all don't think its the Cipro, while urgent care and pulmonologist do. Thanks for posting!
  16. I'm a chronic insomniac--haven't slept thought the night for over 30 years. Can't fall asleep and once I do, I'm up several times and sometimes for several hours at a time. Sometimes I just get 2-3 hours of sleep, sometimes 5, one in a very great while 7. Then I do the happy dance. I haven't found anything helpful (Melatonin, chamomile, deep breathing, warm bath, counting sheep, reading, crossword puzzles, weighted blanket, sound machine, ear plugs, etc. etc. etc.) other than like Katybug said, putting on some show I've watched a million times. Thanks for the heads up on Alpha Delta Syndrome--I haven't heard of that before and will look into that. I've been reluctant to do a sleep study b/c the doctors that believe in dysautonomia blame everything on that and the ones that don't blame it on anxiety. I don't think I have anxiety except as related to the frustration regarding this diagnosis and the lack of professional help.
  17. Thanks everyone. I went to the cardiologist today. He didn't think anything was emergent (but today my heart rate was back to 60) so I'm set up for an echo, stress test and 30 day monitor next week. He said there is some type of diagnosis where your heart rate drops and you can't get it up again even w/exercise, caffeine, etc., but mine usually goes back up w/some effort, just wasn't this week.
  18. I'm glad you found a lead to follow up on. I have frequent UTI's--like 6 or more a year. I have been trying an over-the-counter supplement called D-Mannose that coats the bladder and helps to prevent UTIs. It has one of the same ingredients that cranberry pills do so I'm not sure if it would be an option for your daughter, but just thought I'd mention it. It tends to only work on e coli infections and despite those being the most common cause of UTIs, i rarely have that so it doesn't work as well for me as i had hoped.
  19. I always have very low body temp--96 at best. Sometimes i can be very ill and not have a fever and then doctors think I'm not that ill but cultures come back positive. However, i have also had times where I get a fever and then I actually feel somewhat happy that my body responded normally and is trying to fight it off. Last year I got the flu and had a fever for 9 days and was off work for 15. Crazy long time. How are you feeling? Were you spared from getting the flu?
  20. I have a low heart rate often. It seems to hit frequently at the grocery store so I have to go at un-populated times and run through the aisles to keep it up so I don't faint. Last week it was 53 and it skipped a lot for 4 hours. Beat 3 times then skipped, beat 3 times then skipped. The next day I ended up with a kidney infection so I assume that was my dysautonomia alerting me that something was wrong but it didn't know how to respond appropriately. However, then yesterday afternoon it was 51. I ran up and down the stairs and it stayed at 51. I had brain fog and a headache. When I finally got my heart rate back up to 64, the headache went away and so did the brain fog. Wondering now if this is normal for dysautonomia or if i need to consult my primary or my cardiologist? It sounds like (from other posts) that an asymptomatic low heart rate is okay and nothing to worry about. I also don't want to overreact. Also wondering if others with dysautonomia feel their bodies either overreact to things or react oddly or opposite--i.e. when I am hyperthyroid I can sleep 8 hours and don't have diarrhea.
  21. htberg


    You can be having bladder spasms and you can also have cystitis which feels like a UTI but it is not bacteria related and that is made worse by caffeine, spicy foods, and other irritants. But even though you are on a broad spectrum antibiotic Cipro, it does not treat all strains and a culture is needed. If you feel like the infection is going away but the spasms are not you can ask for Pyridium which helps w/the pain and swelling. One of the biggest symptoms of my dysautonomia is bladder retention and as of 9 years ago I got to the point now where I could not urinate w/out the use of a catheter so I get frequent UTIs--every 4-6 weeks, then on antibiotics for 14 days, then it starts up again within 2-4 weeks. Some have been resistant and I've had to take two antibiotics at a time or take them for 4 weeks straight. So far i haven't even needed IV's when the infections spreads to my kidneys:), but its been brought up many times. I also take 3 things to minimize infections (makes the bladder more acidic and less likely to hold on to bacteria) and spread them out through the day which has helped--Vit C with breakfast, Cranberry pills at lunch and D-Mannose at dinner. Sometimes i do a second D-Mannose at bedtime.
  22. I don't have answers to your questions but I think I stayed at the Holiday Inn and it was actually connected to Mayo by a series of tunnels and walkways. It was actually quite cool b/c I did not have to ever leave. They had food courts, stores and restaurants connected. I went in Nov and again in Dec and it was very cold and snowy there so i appreciated just navigating inside to get everywhere. I'm not sure where the Kahler hotel is, but just thought I'd let you know this, especially if you will be in a wheelchair. Convenience is of utmost importance. I could also just go back to my room to rest in between appts b/c sometimes they were back to back and some days I might have one at 8 a.m, then not another one until 2 p.m. THey are also used to dealing with very seriously ill people so I'm sure they can accommodate you. For what it's worth, I also went in with a near-fatal cortisol level (very low) and they did not admit me.
  23. Good to know. It sounds interesting. I was last at Mayo in 2009--had to go twice to get everything in. They had some trickiness with me too b/c I have dysautonomia, not POTS. From my understanding is POTS is more common and some people with POTS also have dysautonomia. Good luck with your appt. I sure hope they help provide you with answers. One thing I would recommend is to try to get referrals from them when you leave. I'm so hoping this part of the program changed b/c I was sent home to find a doctor that knew about dysautonomia. Hence, how I ended up at Northwestern and University of Chicago, and some other 'top' places. Needless to say, that was 6 years ago and i still don't have a solid neurologist, urologist, endocrinologist, gastroenterologist, or primary. My ob/gyn is the only one that seems to really get it (and my pulmonologist is good) and I think that is because one of her friend's (also a physician) daughters has dysautonomia so she has some experience that way.
  24. Maybe things have changed since I went to Mayo in Rochester, but at that time they had me do a forced breathing test, not a deep breathing test. Sort of replicating what would happen if i was doing nothing and then exercising. The most helpful test for me at Mayo was the sweat test. I've had this done at Northwestern Memorial Hospital and somewhere else and Mayo's was much more advanced--they douse your naked body with gold powder, put you in an pressure cooker of sorts and then the powder turns purple where you sweat. Other hospitals juts do a test on your wrist and ankle w/a sensory of some sort. I seem to sweat there but Mayo kept me in the cooker twice as long as indicated and doused me a second time in some spots b/c i did not sweat on my forehead or feet. I also want to point out that part of dysautonomia is the change of system function from day-to-day or even hour-to-hour. I had the tilt table done at Mayo and it was fine and then had it done a few months later at Northwestern and it was terrible. Its important to do several different kinds of tests and even the same test a few times to confirm the diagnosis.
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