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The Symptoms Get Weirder And Weirder... Anyone Else Experience This?


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So tonight I decided to push myself a little harder and go for a brisk 3/4 mile walk despite my heart rate being 99 before I ventured out for the walk. While I was walking tonight my body just started secreting like crazy. My nose was pouring, my eyes were tearing massive amounts of fluid so bad that the tears burned my eyes, the sweat on my back was horrible and of different character, slick and sticky ( I even tasted it because my tears burned like they were salty, but there was no salty taste or any taste to the sweat at all). When I was done with my walk I took my heart rate and blood pressure as I usually do post walk. While the machine was reading my measurement, I just lost control of my bladder. I did not even feel like I had to urinate at all, it just came pouring out. My heart rate was only 120 post walk and I was well hydrated before venturing out. I had 5 liters of fluid in me with my usual amount of sodium.

Has anyone else experienced incontinence with the dysautonomia? I remember the EP including that question in his assessment of me in the hospital but it wasn't a problem at that time. I do kegel exercises on a regular basis and am able to "hold" my urine or stop the flow midstream, so I don't understand how my bladder just let loose like that.

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I get all the rest of the symptoms you reported except the urinary incontinence. I did have bowel incontinence once very early on in my illness. Urinary incontinence is a symptom of dysautonomia, and while it doesn't make it any better, at least you can know that it is probably related and not a whole new issue. There have been past threads about incontinence if you do a search.

I'm sorry you had to experience this. It has to be one of the hardest symptoms to deal with emotionally. I felt like my spirit was crushed when I had my accident.

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So sorry you are experiencing these 'newest' symptoms, Kellygirl (and others),

This is my first time to post but I was dxed with Dysautonomia finally one year ago after years of doctors, tests and ?? I now think my 'thermostat' is broken. I have Raynauds which freezes my hands, feet and nose. But sometimes the rest of me will be dripping with sweat? I also have a constant runny nose and drainage down my throat. There seems no reasoning with it but I often notice the hot sweats after I eat...and yes, my GI system is affected. I have had urinary incontinence but not always. Just to be safe, I sleep in a Depends because for whatever reason, GI issues hit harder during the night and more often. I have gotten migraines for years but now almost daily I start with an aura.

I'm a 65 yr old female and I understand each person has different patterns, meds and outcomes. Mine seems to be constant. No good days any longer. I do what I can when I can but its hard when not many understand this mysterious disease or its cause? I was blessed to find a neurologist (group) in my city who had training at Mayo for this. It's so good to finally find a place where I can read of others who are in similar situations. I would never wish this on any of you, but I will pray for you. Right now the neurologist says we treat one symptom as it comes. So many meds and I find I can't tolerate medication as well as I used to? According to him, this is also part of Dysautonomia Autonomic Neuropathy and POTS. He cannot give me a reason that I developed this but I was in a car accident in 1991, had a concussion and my neck is fused. I also have scoliosis in lower back?

Feel sorry for each of you. It's not pity we need as much as understanding. Most people do not want to be sick.

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Hi Grace,

I am glad you have joined the forum and am so sorry to hear about your symptoms and diagnosis. It is encouraging to hear that you have found knowledgeable doctors. I can no longer tolerate meds as I used to. I was on seroquel for bipolar disorder and have had to go off of it because it just kills my heart. I was on baclofen for muscle spasms and pain in my back but can't take that either unless I want to be laid out for days. Seems about all I can tolerate is zofran, tylenol and ibuprofen these days... any thing else just feels toxic to my body.

I hope you get to experience some better days.

Next doctors visit I will be asking for medication for urge incontinence and hope it works.

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