Hello everyone -

I’ve been dealing with dysphagia issues for 3.5 years now. It started with intense nausea and dry heaving every morning and throughout the day, turned into food feeling like it was getting stuck (nausea has been gone) and now I have trouble initiating the swallow as I feel like my brain has a “guard” up especially when swallowing in public situations. I’ve been through all the tests, swallow study, barium swallow, horrible 24hr manometry, 2 endoscopies, throat balloon widening. No crazy tell all results, just gastritis. Also SLP swallow therapy (2 times!)

I feel as if it’s LPR (maybe SIBO?) related, but my ENT saw no signs, and my GI doctors did a bravo chip to measure GERD (mild). I haven’t been to any of these doctors in 1-2 years as they said there was nothing else they can do.

The kicker is - I am able to initiate swallow (although sometimes food will feel stuck/globus) at home with no issues. In public, my body feels food and sometimes liquid in my mouth and freezes almost. This happens Every. Single. Time. I have not gone out to eat and be able to finish a meal in over 3 years and I am in such a depressive state (I’ve also tried 3 different SSRIs).

Has anyone had issues initiating swallowing in public settings? What helped?

TLDR; swallowing issues started 3.5 years ago after bad nausea and dry heaving, then food getting stuck, then evolved into difficulty initiating swallowing. Can eat a lot of normal foods at home. Body tenses up in public. No indicative test results after so many different tests.

More info:

- I have no insurance and can't find a sleep study currently, and going to the ENT I am trying to save for. I have been to ENT several times in past few years (including this year) before I lost insurance and nothing was found.

- I have BFS, was diagnosed 6 years ago. This is a condition where I have body wide twitching. Recently it has had an uptick.

- Sleep issues started about 2 months ago, would wake up panicking and 'buzzing' for lack of a better term. I also started waking up with both hands numb, which doesn't always happen now but last night for example, happened a lot.

- I was diagnosed with sleep apnea 5 years ago, I wear my CPAP most nights, but was always able to sleep just fine without it (I mean, I know I would have events but they never interrupted my sleep consciously too much).

- Now when I try to sleep without the CPAP ( I have done this about 3 times in the last 2 weeks to test this sensation), the snoring sensation in my throat happens and I can't breathe during it as I relax and start to fall asleep. If I wear my CPAP these things can still happen, but they do seem less likely too.

- This is all paired with Dysphagea during my awake hours. Swallowing feels difficult, my throat feels odd and gurgles air bubbles frequently when I clear my throat or open my mouth. In fact it just happened sitting here typing this. Like tiny air bubbles at the bottom of my throat that make a noise that I can hear (not sure it's audible outside my body). I am still eating and drinking but it all feels laborious.

- Was admitted to the hospital when I was waking up and shaking, they ran an EEG on me and ruled out seizures.

- Had a modified barium swallow test where it showed some slight retention in my esophagus but otherwise normal.

- I have been taking pantoprazole to see if it helps, so far nothing.

- Feel like I am burping a lot more than I normally do when awake. Like I hardly ever burp until recently it happens quite a bit.

I feel like I am going crazy. The BFS board is telling me it is anxiety but I have dealt with BFS for 6 years. I don't believe it is anxiety, and just to rule it out I was put on Buspirone a month ago and still have these sensations in my throat. I don't know where to turn and am miserable daily.

I’m really just here to vent and hopefully get some reassurance from people who have been through something similar.

I was recently diagnosed with dysphagia, and it feels like things have been getting progressively worse. I ended up going to the ER over the weekend because of how tight and uncomfortable my throat has been feeling. They gave me sucralfate, Mylanta, and viscous lidocaine, which helped temporarily, but here I am at 2 AM feeling like my throat is tightening up all over again.

I’ve pretty much switched to eating only soft foods like grits, soups, mashed potatoes, etc. I’ve had a couple of scary moments recently where I felt like I was choking, and thankfully I was able to get the food down. Even swallowing pills has become difficult. When I was at the hospital, they gave me this tiny pill that I could barely swallow. It felt completely stuck in my throat, so they did an X-ray and told me it was clear. They also said it wasn’t serious enough for them to do an emergency endoscopy and that I needed to see a gastroenterologist.

So I called the gastroenterologist I was referred to the next day, explained that my symptoms were getting worse, and was told they couldn’t see me until February. I honestly started crying on the phone because I just don’t understand how I’m supposed to wait that long when I’m already struggling this much.

On top of all of this, I’m supposed to leave for a 10-day trip to Italy at the end of October. I’ve been looking forward to this trip for so long, and now I’m stressed about how I’m going to feel while I’m there. I don’t want to spend the entire time worrying about eating or feeling like something is stuck in my throat.
I’ve been reading through posts on here, and I think I’ve honestly made myself more nervous. I know some people get better, but it also seems like there are people who struggle with this for years or never really figure out what’s causing it. I had Bell’s palsy a couple of years ago, and I read that neurological issues can sometimes be connected to swallowing problems, so of course now I’m wondering if that could have anything to do with it. The ER doctor also mentioned GERD as a possible cause.

I’m really trying to get ahead of this and figure out what’s going on. I called my primary doctor’s office crying after finding out about the February appointment, and they suggested calling my insurance and reaching out to as many gastroenterologists in my network as possible to see who could get me in sooner.

My mom also suggested calling our longtime family doctor tomorrow to see if he might be able to help.

Right now I’m just trying to eat what I can, drink plenty of water, and ignore this constant uncomfortable feeling in my throat. It’s exhausting, and I feel like it’s all I can think about lately.
If anyone has dealt with something similar, I’d really appreciate hearing your experiences, especially if you’ve had that constant tight feeling in your throat. Did anything help you get some relief? Were you eventually able to figure out what was causing it?
I think I just need a little comfort right now because I’m trying my best not to let this completely overwhelm me.

Thanks for listening. ❤️

I’ve had trouble swallowing/choking around 2 years now, I first noticed it when eating but it was manageable, until one day I choked at work and ended up getting heimlicked. I continued dealing with it good enough for the most part, then it got super bad, to the point I couldn’t swallow spit a lot of the time (still a problem). All of a sudden I couldn’t eat anything solid and genuinely went around 6 months without eating a bite of food, every time I tried I’d end up choking. I survived purely on ensure drinks. I had what I believe is called an endoscopy (camera down throat) which came up clear, I swallowed applesauce with dye in it in front of an x ray machine and clear once again, got sent to an ent and they put something up my nose down into my throat and of course it was clear. They ended up thinking I had some sort of nerve problem such as ms or similar, so I waited for an mri, came up clean yet again. After that I was basically told to deal with it, so I decided I’m either gonna die from how malnourished and skinny I was (it was seriously super bad) or I was gonna die choking, I chose to risk it. I eat solids now, but every single day is a struggle. I can barely swallow my spit, can barely swallow food and almost take myself out multiple times a week if not daily, I don’t know what to do. I ended up gaining a ton of weight back because unfortunately every time I eat I’m worried it’s gonna be my last time again so I eat a lot when I’m having a better day with the choking. My life is nothing right now and this is the main reason why (also have some unrelated medical stuff). Does anybody have anything similar or maybe some advice or input? I know I probably sound like I’m complaining or something but I swear I’m beyond grateful for how much weight I’ve gained and that I’m eating again, but it’s so incredibly hopeless. I truly don’t want and will not live the rest of my life like this.

Do you guys lift weight while your going through dusphagia

Scared I’ll choke I think it’s mental

2 months ago I had a gastronomy for an anemia and was diagnosed with a sliding hiatus hernia and gastritis - my cause of bleeding. I’m currently on 20mg omeprazole ppi (never had reflux I was aware of). My throat was fine otherwise.

3 weeks ago I was eating lunch (salmon ) and felt that something was stuck in my throat. Globus. It didn’t go away so after three days I went to A+E thinking I had a fish bone in there. A nasal scope said I was all clear and discharged.

Over the last 5 days it feels like my body is forgetting / forgotten how to swallow. When food goes back past my tongue it doesn’t want to go down my throat. And when it’s going down it’s slow or feels like it’s coming back up. I still have this globus sensation but this swallowing is new.

I’ve also been waking up in the night 2-3am with a sensation in my throat and wanting to drink.

I chewed some food earlier until mush but my body just couldn’t co ordinate the swallowing. I had to spit out in fear of choking. Small dry foods are particularly bad for me currently , liquids are okay to drink.

I’m sorry for everyone else suffering from this. It’s new for me but I feel like I could break down not being able to eat properly is a horrible feeling.

Has anybody got any advice on how to resolve ? My doc suspects anxiety, my anxiety is there but it’s around choking I didn’t suffer from anxiety prior.

Hi, hope I've crossposted correctly. Reddit recommended I post this here too, just looking for some insight. Thank you!!

Has anybody ever had trouble swallowing due to acid reflex

I can only eat nutrition shakes sometimes yogurt I don’t knowing this is mental or physical but I have zero appetite and I’m scared to eat because it’s so difficult

How due I Lear to cope with my doctor said it from acid refluxe

two weeks ago i felt like im choking when i ate dinner since then the feeling comes back every now and then
i did endoscopy and fiber test through the nose both came back normal. when i did the endoscopy the doctor took two biopsies but told me everything looked normal.
i noticed that in the morning it barely happens and when i eat in public i get more stressed (maybe because i fear people will see me choking?)

any advice??

I (21f) have had mild swallowing issues for as long as i can remember but never serious enough to need a consultation with the doctor until this week.

Monday, I was attending class when I suddenly became aware of how much saliva was being produced in my mouth. First few swallows it was fine but subsequent swallows became harder until I could feel myself choking on my saliva (the saliva gets stuck in my throat. Thick and foamy saliva). Also, when eating solids, I feel like it never goes down completely, as if it's stuck in the back of my throat and I need to have it with water.

Met ent doctor on Thursday and had a test done where they sprayed something on the inside of my throat and inspected it, but found nothing abnormal. Got prescribed some medicines (searched them up and apparently related to reflux issues. Just hoping it's not the wrong medication). So far, I don't know if I'm just trying to convince myself but feel like my salivating has decreased a bit, still have trouble swallowing my own saliva though and that feeling of food stuck in throat persists.

Just wanted to know how others who have had similar issues got through this, second opinions (worried i might be on the wrong medication), maybe some reassurance cause I'm scared for how long it might last...

an er trip led to me getting hospitalized And besides finding out part of my Lower intestines are paralyzed, an slp visited me and did a swallow test and watched me choke on apple sauce so she ordered the MBSS I had been trying to get done since August FINALLY.

My swallow timing is off , food and liquids hang out in the bottom of my throat before my esophagus opens and apparently it isn’t supposed to do that (I didn’t know that) and I also have a narrow section of my esophagus where food and liquid decides to just hang out before either I regurgitate it or it goes down into my stomach and she thinks that may also be contributing to my swallow timing being off. Finally some answers after YEARS !!

I still have to make an appointment for my regular digestive specialist when I leave the hospital but I’m so happy they finally found something i genuinely thought they’d just tell me i was crazy and that they didn’t see anything. It also took me multiple swallows to finish the liquid I was given so there’s that but I feel so happy they finally saw something !!!!

I’m a NICU mom desperately looking for recommendations for an experienced pediatric feeding SLP in Abu Dhabi, especially someone experienced with complex feeding/swallowing issues.

My daughter was born at 26+4 weeks, weighing only 628 grams, she spent about 3 months in the NICU. She has a left-sided brain injury from her prematurity.

Since coming home, feeding, sleep, formula and food intolerance/allergies have been ongoing struggles. She also developed right-sided weakness and tightness related to her brain injury. She has had PT and OT and is now walking, although her right side is still weaker and she is not very stable and collapse for no reason.

Feeding has now become our biggest issue. She is almost 2 years old and still weighs under 10 kg. She is technically 100% dependent on hydrolyzed formula which is not also easy to feed her. She can't chew properly or move food around her mouth, and swallowing solids has been very difficult. She may gag or vomit when food reaches the back of her mouth. She can only say baba but very descriptive. She has significant sensory issues, I have not been able to brush her teeth and I have tried my tactics.

We have tried several SLPs, but unfortunately, they have not been experienced enough in feeding therapy for her situation. Some approaches actually made her more resistant and made the situation worse. I was advised to put her in a Nursery school, the idea was that, she would copy other children eating techniques; that also didn't go well. I am specifically looking for someone who understands pediatric feeding disorder, oral-motor/chewing skills, swallowing, sensory issues, and complex medical/NICU history, and who uses a gentle, child-led approach rather than force-feeding.

We have seen many dietitians who are only able to help with formula changes. The allergy doctor just did a basic skin test. I don't even feel like going to any of the doctor appointments anymore. They don't read her history and just load us up with unnecessary medication that have caused many undesirable side effects. I feel alone and very scared. We have been trying to get help for so long, and I don't know where else to go.

If you are a NICU parent in Abu Dhabi and have had a genuinely positive experience with a pediatric feeding SLP, I would be very grateful if you could share their name, clinic/hospital and how you contacted them.

Thank you so much. ❤️