anybody with dysautonomia - autonomic nerves are messed up?

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Hello everyone,

I'm so glad to find this forum in my quest to help my health. So sorry for the long post! I have a ton of issues and many appear to be caused by dysautonomia. Basically my autonomic nervous system doesn't function correctly and all the body functions we don't control work improperly. Some of this might be caused by my severe stenosis in the cervical and lumbar spine. Or maybe being T2 diabetic, docs really have no idea. I've also got POTS, UARS, sleep apnea, and more that cause hosts of problems. The list is pages long. The whole thing is a vicious circle with one problem feeding another. Meanwhile my life gets worse.

Because my nerves have messed up my digestive tract and I have poor motility, I need to take all sorts of products just to keep things moving and avoid severe constipation. Constipation also messes with my neurogenic bladder and causes urinary retention and incontinence due to pressure on everything.

I'm told I have extremely tight pelvic muscles and need to relax them. Reverse Kegels. This includes having piriformis syndrome that is causing pudendal nerve entrapment further exaggerating my incontinence. Imneed to drink a ton, 3 litres a day, of water and electrolytes to keep my POTS under control, so that sure adds to always needing to go.

Over the years my incontinence, both bowel and urinary, has increased to the point that I always need some sort of protection. The most annoying part is how variable this all is and can vary from minor leaks to severe day to day.

I don't react well to most meds so that is not really an option and docs have just suggested basically numbing my nervous system to submission to hide most of the pain I have. I've been to specialized neuro clinics and just about every other doctor under the sun and nobody really has a clue except throwing meds at me that fix one thing while causing a ton more.

Hoping someone has some suggestions as this is getting worse. Just started using a CPAP and getting up for bathroom runs a whole bunch of times is messing with the therapy.

If you read this far, I thank you and welcome any suggestions you might have.

 

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Hi JustMe! Welcome. I think I may have dysautonomia but no one is interested in testing for/diagnosing it. You know the drill.

I wear a pull up and additional pads inside it and also protect my sheets/bed at night. I reached a point where I recognized that I *could* get up and go to the bathroom but I’d leak everywhere on the way. My sleep is critical to me based on my medical issues and I am very committed to it. I basically trained myself to not wake up to go to the bathroom. It’s not perfect, but it works for me.

 

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Drugs may not be effective to repair damage. I went to my urologist a few months ago and he wrote down a message to work on muscles pertaining to bladder and anus as they aren’t functioning properly. There are specialists in this field of physical therapy. You need to request this type of treatment. My bowels are doing the opposite after a bowel movement and keeping partial poop inside me causing it to slowly leek out after a bowel movement. I’m on my third week in therapy and it may take 6 months to a year to turn things around. Also working with trying to strengthen the bladder muscles also. The bladder might be limited due to 4 prostrate surgery. I definitely recommend in looking into physical therapy.

 

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@LeeC That is basically what I have come down to. If I need to wear the diaper anyway I might as well use it. Especially if it helps me with my overall issues. I guess it is just another tool to help me along. as many have stated going intentionally is a big leap but if it helps me I really don't care. I've got much bigger things to worry about.

And yup, the dysautonomia specialist I saw basically brushed me off.

 

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Sorry to hear of all your problems. My family has many dysautonomia issues. We try to stay away from nerve blockers as much as possible. One medication that we have found useful, especially for digestive track muscle spasm is Baclofen. It's a muscle relaxer that doesn't cause drowsiness or other side effects like most others and there has been one study done that showed benefits for digestive track muscles. You would have to work with doctor on dosing. They usually start very low dose and then step up incrementally ensuring no other side effects are presented. One of my daughters also had Botox injections in her pyloric valve/muscle (done through endoscopy) which had huge positive impact for 3 months already and counting. Her muscles would spasm to much when she was starting to eat that it was too painful to finish a meal. Baclofen helped some but Botox helped more. Hope you are able to find some combination of management options to help things improve.

 

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Sorry to hear of all your problems. My family has many dysautonomia issues. We try to stay away from nerve blockers as much as possible. One medication that we have found useful, especially for digestive track muscle spasm is Baclofen. It's a muscle relaxer that doesn't cause drowsiness or other side effects like most others and there has been one study done that showed benefits for digestive track muscles. You would have to work with doctor on dosing. They usually start very low dose and then step up incrementally ensuring no other side effects are presented. One of my daughters also had Botox injections in her pyloric valve/muscle (done through endoscopy) which had huge positive impact for 3 months already and counting. Her muscles would spasm to much when she was starting to eat that it was too painful to finish a meal. Baclofen helped some but Botox helped more. Hope you are able to find some combination of management options to help things improve.

What a blessing it is to see you back. May the Lord be blessing you to continue sharing knowledge and care for others and there conditions in this forum.

Blessings In Christ,
Honeeecombs

 

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@Justme Welcome to the most supportive and accepting forum I’ve ever known! Thanks for a great introduction to yourself.

You might consider keeping a urinal next to the bed so you don’t have to get up and take off your CPAP gear to go to the bathroom. I’m assuming you’re male because most on the forum are. Urinals aren’t really an option for women.

@NorthShoreAdam I also tried Baclofen at high and low doses for an unrelated matter, and I agree that it doesn’t have side effects. It is also one of the oldest prescription medications around, so it’s safety is very well-established. I read an entire book about Baclofen