The Botox is supposed to decrease the recurrent bladder spasms that result in urinaray urgency (and incontinence). The risk is that I will end up with a temporary "neurogenic bladder" and urinary retention. That could be bad because I have a fibrotic prostate from radiation and also don't really have the manual dexterity to self catheterize, so I could potentially end up with a temporary indwelling catheter or suprapubic tube if things don't work out as planned. The other option might be a bladder pacemaker.
In terms of other medications...I am on magnesium caplets and miralax for the constipation (I tried Linzess but developed severe abdominal cramps), flomax for urinary issues (tried Detrol but that made my constipation and gastroparesis worse), and nothing other than marinol for the queasiness (reglan gave me CNS side effects). And the gabapentin and lorazepam. I can't take any opioids because of the decreased gi motility. It seems like whatever works for one issue, makes something else worse.
I did have a normal endocribolgy workup (thyroid, cortisol, acth Stimulation test, hemoglobin A1C), so the presumptive cause is autonomic neuropathy due to oxaliplatin...and considering my severe peripheral neuropathy, this makes the most sense.
I have thought about setting up an appointment at Mayo or Hopkins for treatment advice, but I am not sure there really are any good options, and frankly I am not sure I have the energy to see yet another physician.
Have you come across any other people with chemo induced dysautonomia? It sure would be great to hear what others have tried!! I'm so glad you started this thread