Gagging + coughing w/saliva only (possible cricopharyngeal spasm?)

Newbie here… I’ve been to too many doctors and specialists (and even tertiary centers), and nobody has a clue what’s going on. Because my case is medically “complicated“ some just don’t even want to risk doing anything, which leaves me in a very helpless position as the patient.

I have 24/7 intermittent but frequent episodes where I am severely gagging (sometimes to the point of vomiting) and coughing all the time (in a Covid world, I’m constantly explaining I have had this since slightly before there was Covid). I cough so much it hurts in my chest and back. It seemed to start when I abruptly took myself off of opiate pain medication just before the Covid pandemic.

What’s been interesting over the last several years of this worsening is that it only seems to happen with just saliva (if anything, I under-produce vs overproduce saliva although very occasionally some foods seem to produce thickened phlegm). The only things that relieve it are actively eating or drinking something, or often just sucking on a hard candy— and Donnatol elixir specifically had been my rescue medication for the worst episodes, although this is no longer available in the United States. Taking Donnatol in pill form did absolutely nothing but caused side effects.

I have several things going on which I personally think are playing a role here, including classical Ehlers-Danlos syndrome, Sjogren’s disease, RA, undifferentiated MCTD, Hashimoto’s disease (and other autoimmune diseases), esophageal motility and sphincter dysfunctions found in testing, hiatal hernia, a history of vocal cord dysfunction and on recent EGD mild reflux although I am not usually symptomatic. I am unsure what else about my medical or Rx pharmaceutical history may be relevant. Taking both high doses of PPI and H2 blockers for reflux has not made a difference.

To me this feels spasmodic in some way, it comes on day and night, and fits the descriptions I found courtesy of Dr. Google for cricopharyngeal spasm to a “T,” but when I have seen specialists including at tertiary centers, they blow all of it off and say that it doesn’t make sense that it goes away with actively eating or drinking, yet I have read including from scholarly articles and national/international organizations dealing with this area of the body that with cricopharyngeal spasm that is exactly what happens, because the muscles are forced to more forcefully contract when you are eating or drinking, and then the swallowing/gagging/coughing problem returns. The ENT doctors send me back to the gastrointestinal doctors and vice versa. I had done speech therapy exercises for over a year which did not seem to change much. I have tried acupuncture, mindful meditation, breath work, etc. I have had additional imaging of my spine, brain and so much more. I just want and so badly need this to get better controlled and hopefully stop.

This has been socially embarrassing, life-altering and even painful. I am so exhausted chasing elusive answers but ignoring it sure hasn’t helped. I am not even sure if this should fall under digestive health or ENT within this forum. Anyone who has any ideas that may help, I would be eternally grateful!