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htberg

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About htberg

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    Advanced Member
  • Birthday 03/21/1969

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    Female
  • Location
    IL

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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!
  13. 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!
  14. 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.
  15. 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.
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