I also have experienced dysautonomia, presumably as a result of oxaliplatin. Interestingly, i had only mild peripheral neuropathy during my neoadjuvant FOLFOX, but shortly after completing my 8th cycle I began to experience progressive pain and numbness, balance issues, and a worsening tremor.
The symptoms of dysautonomia started around the same time, but it took awhile to definitely diagnose what was causing them. I do not have adrenal dysfunction and my situation is complicated by significant pelvic radiation disease. My main manifestations are gastroparesis (causing constant queasiness and and significant weight loss), severe constipation (mistaken for stoma blockages at first), orthostatic hypotension, bladder dysfunction, and poor temperature regulation (hypohidrosis alternating with diaphoresis). My peripheral and central neuropathy have also been progressive, even though my last oxaliplatin dose was more than 30 months ago. I remain on significant doses of gabapentin and lorazepam for that.
I do have a personal history of autoimmune disease (psoriatic arthritis) and have been on immunosuppressive therapy for that, and have a family history of chronic inflammatory demyelinating polyneuropathy.
Unfortunately, I have not found many treatments that really help all that much, although my queasiness and appetite have responded to marinol (in spite of the fact it actually decreases gastric motility). I eat frequent small snacks, eat a high salt diet, stay well hydrated, and move slowly and deliberately to avoid passing out. I have been working with a urologist, and will be having Botox injections next. I did work with a pelvic floor therapist and had some success with biofeedback but still suffer from urinary retention alternating with bladder spasm and incontinence.
It has been a frustrating experience to say the least, and I remain totally disabled at this point. It is indeed a very rare complication of cancer treatment, but you are not alone
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia