Sudden dysphagia. Feel so alone.

_witchcore

Hi, I'm hoping for advice from anyone with swallowing problems.

I have ehlers Danlos syndrome and although I was diagnosed with associated esophageal dysmotility 10 years ago, I have managed so far with only a few problems.

Sometimes I've had to push food down with water. I've increasingly often "been sick" but the food that came up was just chewed and there was no stomach acid. Like it had never reached my stomach. I have GERD and have been taking omeprazole and metoclopramide. For the last year, whenever I've got heartburn it hurts really bad as though I have swallowed something sharp that's digging into the sides of my esophagus all the way up.

At the beginning of January I had covid and couldn't swallow due to my nose being blocked. I've been made aware today that sometimes when people get covid their swallowing can be affected because of the relationship between breathing and swallowing. I've had this annoying tickly throat thing with covid but nothing bad. I mostly struggled with the blocked nose which comes and goes. At least once a day I get what feels like bad hayfever and I have to breath through my mouth. Due to this I'm getting a dry mouth and I thought that was causing the swallowing problems.

Due to the dry mouth, and because I'm on long term prophylactic antibiotics for something else, I ended up with esophageal thrush. It was very painful and it felt like I was eating glass. I had fluconazole and it went away.

The soreness has completely gone but now I can't swallow anything other than thickened liquid through a straw. It's like my brain has forgotten how to swallow and I'm so scared. I have a constant feeling of thin drinks going down the wrong way and I have this persistent cough and gargly noise when I breathe.

I have a barium swallow the week after next and I have a referral to ENT who are deciding whether to treat it as long covid or the community team as I have an underlying condition. I don't know what the difference is but presumably long covid will go away and my EDS won't so it's a different approach to the problem maybe.

I thought I was coping. I have to put my chin down to my chest when I swallow or I can't do it. I was already doing this before my doctor recommended it today. Apparently it closes off the airway. The doctors pharmacist spent ages on the phone with me yesterday and has prescribed all of my medication as water soluble or liquids. I have found that "tropical" fresh fruit juice disguises the bitterness of most of them. Yesterday I tried reddy brek but it had too many bits in and was too thick to swallow. I got some protein shakes on prescription as a favour by the pharmacist but they can't refer me to a dietician for more until I'm underweight. I am coughing with every sip of drink but things I have managed with are the shakes, coffee with plenty of milk, fruit juice with no bits and ovaltine with milk.

All was great until today when I was about to swallow a sip of ovaltine and my brain went "what if I choke on this" and part way through the swallow my muscles relaxed and I choked on it. Now it is happening with every sip and even my own saliva. I know what's happened tonight is being caused by my own mind but I don't know how to stop it or what I'm doing to do between appointments. I've tried doing some mindfulness and staying calm when I swallow but I can't do it.

I am so scared and wondering if anyone has been through this and had any advice? Has anyone with Ehlers Danlos syndrome ended up unable to swallow? Or had this due to long covid? Does it get better?

Danielle_2022

Hi @_witchcore,
I don't have any personal experience of this myself, so I'm hopeful that other members will see your post soon, but I just wanted to check in and say that you're not alone. We're here for you and you've already achieved something big by sharing this story so vulnerably with everyone. I'm glad that your medical team seem to be doing everything they can to help, please keep us updated with how your appointments go over the next few days and weeks. I'll be thinking of you

SueHeath

Sorry to hear all this witchcore , like Danielle i'm afraid i do not have any idea of your illness and symptoms, i just needed to say hi so you didn't think you were being ignored , take care 

chiarieds

Hi @_witchcore - I'm messaging as I have Ehlers-Danlos Syndrome, but not your swallowing difficulties, however hoping a couple of things may help. I suffer with allergy problems (likely linked to EDS) & have just had 3 days of relentless 'hayfever' like symptoms, e.g. sneezing, watering eyes & intermittent blocked nose, so appreciate your difficulty with that alone.

As a former physiotherapist, I would suggest try adding breathing properly as this aids relaxation, so something to help you in trying to keep calm. Try this lying down initially, but it can also be used in sitting or standing, until it becomes natural. Please see this on diaphragmatic/abdominal breathing: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf

When swallowing, keep a good upright posture, & just try then tucking your chin in a little, which is more natural, to see if that helps; remember to think about your breathing, so you remain relaxed......and yes, you can do it.

As the others have said, kindly let us all know how you get on.

APHRODITESHEART

GOOD MORNING. I AM SORRY TO HEAR ABOUT YOUR POST COVID DIFFICULTIES. I AM GLAD TO SEE YOUR CLINICAL TEAM IS TRYING TO FIND THE CAUSE..I FOUND PERFORMING AT LEAST HALF AN HOURS WORTH OF TONGUE AND MOUTH EXERCISES AT LEAST TWICE A DAY HELPED. PROGRESS WILL BE SLOW THOUGH. AND FOR THAT ANNOYING COVID BACK OF THROAT TICKLE, I USE COLLOIDAL SILVER SPRAY. I HOPE YOU GET WELL SOON..
("DISCLAIMER:THESE ARE MY PERSONAL EXPERIENCES AND I DO NOT CLAIM ANY MEDICAL EXPERTISE)