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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!
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Hi @flyingpigsrule and welcome to Mayo Clinic Connect. Glad you found us. I completely sympathize with feeling very helpless as the patient when your body has so many issues going on. I added your post to the ENT section of Connect as well so you can engage with even more members.
It seems as though you have researched cricopharyngeal spasm pretty extensively. Have you been to or considered comprehensive facility like Mayo Clinic?
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1 ReactionThat all sounds awful for your quality of life and extremely frustrating. It also seems like you’ve tried everything. Can we assume you’ve been to an allergist?
Thanks for reaching out and trying to help. Yes, I’ve seen two allergists. I test negative on all blood panels for everything but also have a huge number of medication allergies— and am frequently having other allergic-type symptoms (I also have well-controlled asthma). I get rashes but they are assumed to be autoimmune. I also have other, bad GI problems including chronic iatrogenic pancreatitis, possible Crohn’s developing (most symptoms, positive antibodies but only inflammation on biopsy). Something is causing this but yeh, it’s frustrating when nobody can diagnose it. There have been “findings” that seem to explain things but at this point I should probably repeat the esophageal manometry (which wasn’t fun at all) and the barium swallow studies— just because they showed issues but were done before this really got like it is now. Thanks again for your suggestions.
Hi Amanda— I appreciate that suggestion. I probably would benefit from a multidisciplinary consult. Last time I was at Mayo I was seen in several departments but nobody seemed to coordinate their findings. For this I’ve been to Johns Hopkins, Georgetown University Hopsital, George Washington University Hopsital and several local specialists.
I appreciate you adding this to ENT also. Does Mayo have specialists who deal specifically with cricopharyngeal spasm?
Hi @flyingpigsrule, as far as I know, we have three. Ernest P. Bouras, M.D. in Jacksonville and then Magnus Halland, M.D., B.Med. and Karthik Ravi, M.D. in Rochester.
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5 ReactionsThank you. I will check into that. I appreciate your help.
Hello @flyingpigsrule. When I read your post, I sincerely thought I was reading something that I had written. I have been dealing with the exact same issues you describe for four years. I have seen ENT's and gastros alike. I have also had upper and lower scopes done. I have been gagging and coughing for four years. I too wonder if I am having cricopharyngeal spasms. Were you able to get any help/relief after this post?
I know exactly what you mean when you say how it ruins your life. I am retired and looked forward to doing some traveling. My son said-mom why are you coughing and clearing your throat all the time?- I then thought maybe I should not visit them and spend the night. My friend said lets do a cruise-which means sharing a room, I am too embarrassed to share a room with a friend, and gag and cough and spit all night., I cannot believe that neither ENT nor GI have any idea as to what it is, or how to make it better. I know that there are other people suffering greater than me, but this has ruined my life as I imagined retirement to be different.
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1 ReactionNo, but I am awaiting a gastric emptying study scheduled on the 20th. After that I am done with tests. But I do plan on seeing an Allergist. I lost my primary doc. as she has left and moved away. Now I am on the search for a new doctor. Gee, could life be any sweeter?
Hi Amanda
I too have had a nagging ,sometimes severe gagging cough for years, usually after bronchitis and then went away, eventually it lasted longer after each cold, and now I have had it for many years and doctors sent me to pulmonologists, allergists, and finally I decided to take myself to a gastroenteronologist because I felt it was between my longs and throat or ?? and I found I had a hiatal hernia. I am looking into surgery but wondering if it will stop the cough because it is terrible