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Help/advice with dysphagia/trouble swallowing due to GERD?

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Posted 11/19/2015 4:51 PM (GMT 0)
My heartburn/dysphagia means mealtimes for me are hell. I've simultaneously developed a fear of choking, naturally, as I have trouble swallowing. I know a part of it is psychosomatic but a very real part of it is also acid damage to my throat.

Zantac and Prilosec haven't done much, and I hate staying on medications that don't do anything for me.

Do folks have advice/tips for this trouble swallowing- any home remedies, even? Any exercises, tips for keeping a healthy weight, etc.? I've lost about 15 pounds (I had some "winter padding" so I'm nowhere near dangerously thin, but still). I'm currently drinking/eating everything in smoothie form, sometimes my throat doesn't hurt as much and I can get through something like a slice of bread and cheese, etc. but the majority of the time it's a struggle to swallow, and then I'm in fear that I'll choke or something, and on top of it all my throat really hurts.

Has anyone tried anything other than PPIs to help with this? Or even any recipes or foods in the meantime? I'm working with a therapist for the fear of choking, but my GP hasn't been much help- I'm getting a referral to an ENT and a gastroenterologist, but in the meantime is there anything I should be doing that I'm not?
Posted 11/19/2015 4:57 PM (GMT 0)
I had dysphagia for years, my esophagus motility is weak, the one thing that helped was domperidone. I'm on 20mg a day at the moment and food never gets stuck on the way down any more.

For times when food does get stuck the only thing that seems to help is sipping warm water, but that gives me heartburn now so its not a great solution.
Posted 11/19/2015 5:01 PM (GMT 0)
Doesn't domperidone come with warnings for patients with cardiac problems? I have an arrhythmia, not sure if there's an issue with the beta blocker I'm on or something, but I thought that medicine came with a warning label for that.

Thank you though!
I can try bringing it up to my doc.

It's mostly the *act* of swallowing, where it hurts or I struggle to get it down into my throat. For a while, it felt like food was getting caught in my esophagus, but that's passed for the most part now.
Posted 11/20/2015 2:11 AM (GMT 0)
I found Yogi Throat Comfort tea to be very helpful when I had a recent bout with this.
Posted 11/20/2015 5:55 PM (GMT 0)

maelstroms said...
My heartburn/dysphagia means mealtimes for me are hell. I've simultaneously developed a fear of choking, naturally, as I have trouble swallowing. I know a part of it is psychosomatic but a very real part of it is also acid damage to my throat.

Zantac and Prilosec haven't done much, and I hate staying on medications that don't do anything for me.

Do folks have advice/tips for this trouble swallowing- any home remedies, even? Any exercises, tips for keeping a healthy weight, etc.? I've lost about 15 pounds (I had some "winter padding" so I'm nowhere near dangerously thin, but still). I'm currently drinking/eating everything in smoothie form, sometimes my throat doesn't hurt as much and I can get through something like a slice of bread and cheese, etc. but the majority of the time it's a struggle to swallow, and then I'm in fear that I'll choke or something, and on top of it all my throat really hurts.

Has anyone tried anything other than PPIs to help with this? Or even any recipes or foods in the meantime? I'm working with a therapist for the fear of choking, but my GP hasn't been much help- I'm getting a referral to an ENT and a gastroenterologist, but in the meantime is there anything I should be doing that I'm not?

So sorry you are going through this. I am struggling with the same thing and have lost roughly 12 pounds that I could not afford to lose. I understand the fear of choking very well and I have been working with a therapist but honestly its not helping because since this is linked to a physical condition that isn't resolved I still feel like I am going to choke no matter how many therapy sessions I have. I started to only eat liquids back in July- smoothies, ensure(really helps if you arnt drinking them), instant breakfast and soup, how freakin depressing? I just started to add pudding and yogurt(both frozen and not) more often and I also added mashed potatoes with lots of butter and gravy to help get it down. One thing I just started yesterday was peppermint tea because I read peppermint is suppose to relax the LES. Now I noticed for me it does help somewhat however please be aware if you try this that peppermint can cause GERD to flair up.


Also eating without distractions helps me however I can not get any peace when I try to eat at work because everyone insists on coming into my office and talking to me whenever they see me eating or I get a million phones calls from clients (I don't get a lunch break I am expected to work) so after reheating my mash potatoes about 6 times I just end up throwing my lunch out.

PPI's haven't done a thing for me either and I am really starting to think I have a motility disorder and not just GERD. I hope I can eat normal again soon but I lose hope everyday.
Posted 11/22/2015 2:49 AM (GMT 0)
LAWCHICK, I am so so sorry. I really truly feel your struggle.

I'm terrified as well. It's only been a month or so for me. It started, lasted about a week, I went back to eating normally, and then something shifted... I think I had a burger, the GERD flared up, and I really struggled to swallow. That was October 24. Ever since, it's just been a daily ENDEAVOR to eat, and I barely do. I have 2 Ensures a day, smoothies, yogurt, etc... but it's hellish.

I can get through a Stouffer's Mac and Cheese in like an hour? I eat very slowly and when I swallow I put my chin down to my chest to make swallowing easier/close my airway, and that helps.

I tried having clam chowder today at a dinner with friends and I just got so petrified/scared I felt bile rise in my mouth, although this may have been a GERD reaction.

I definitely need to work with my therapist, but Lawchick, maybe you need a new therapist who will work with you in a different way? That's what I'm trying to do.

I'm nervous of being sent to the hospital, or to an eating disorder clinic... I'm scared of trying to explain this to my doctor and of anyone getting the wrong idea. I just want to get the right treatment, the right help, because I realize this problem is about a balance of body and mind... physical/psychological. cry

Best of luck to you, Lawchick... maybe we can keep each other updated? I should start eating mashed potatoes, I haven't even thought of that.
Posted 11/22/2015 9:44 PM (GMT 0)
I'm always checking in on the forum so feel free to keep me updated on how you are doing and I can do same. I actually drink three ensure a day, morning, afternoon and evening. The mash are pretty easy to eat as long as I put the gravy on it so it's not too dry. I have already had a dr ask me if I'm anorexic and this was after explaining how I desperately want to eat again and am tired of being hungry, not sure how many people with anorexia seek out Drs and say that?prob not a lot! I was eating the Mac and cheese from stoffers which took forever of course but I started having issues with it not going down and had to leave work on two different occasions due to it so I stopped. I can't do clam chowder either. That as actually my first true issue I had, it regurgitated and I felt like I was going to choke. I really need to stay on top of my eating or drinking I should say but I have such a strong adversion now meal time it's like I just don't want to. As for My therapist she is nice and all but I feel like she doesn't really go over coping skills like it's just me talking about my mundane life.

Anyways please keep me posted and if you try the mash pototaoes let me know how they work out for you. I hope you are able to find much quicker relief from this. When do you see the ent and gastro? Also I been looking into something called slippery elm and Manuka honey, going to make tea for it as I've heard it helps with throat issues it may be worth looking into.
Posted 12/13/2015 5:21 PM (GMT 0)
Has anyone heard from Andy1986?
Posted 12/14/2015 10:04 AM (GMT 0)
I have this issue too. What I've learned this year from a thorough ear, nose, and throat doctor is I have something called vocal cord dysfunction which causes food to become easily lodged in my throat.

Meat and fish are the worse for me to eat. I have to be mindful about taking small bites and when the meat and fish are not dry I do better.
Posted 5/31/2018 9:56 PM (GMT 0)
I had a swallowing problem around 11 yrs ago. It started shortly after I started taking Nexium for acid reflux. I always wondered if it was the PPI that was causing the problem, but I had to take the pills, as I was having heartburn, regurgitation, and saliva build up. My reflux problems were under control, but I had this swallowing issue for a 2-3 years, and I lost a bunch of weight. I saw a few different doctors, got tested, and nothing really came of it. I eventually got better. My swallowing didn't return to 100%, but it was tolerable. I had a hard time with dry & tough food, but as long as I ate all my food with water, I was good. In fact, it was gradually getting better. But in December of 2016 I got this terrible cough. I would cough so much, I'd sometimes throw up. It eventually went away, but when March 2017 came around, almost overnight, I started getting severe throat burning and heartburn. This was after years of no reflux issues at all. A few months after the reflux got bad, I started having issues swallowing. I'm now on 2x Protonix daily and the reflux appears to be under control, but the swallowing has gotten worse. I have a hard time starting the swallow and pushing it down. I got a manometry done a few months back showing I have severe dysphagia, but my GI doc wasn't all that helpful. He was more concerned about the reflux. I don't know what to do at this point. I suspect this problem, at least partially, has to do with my weight. At the time this all came back in March, I was at the heaviest I've ever been. Same thing could have triggered it the first time 11 yrs ago. I'm trying to lose weight and have an appointment with a speech/swallowing therapist next week after getting an ENT evaluation. This past year has been a nightmare. I hope it gets better...

Post Edited (brianissleepy) : 5/31/2018 3:59:45 PM (GMT-6)

Posted 6/1/2018 12:14 PM (GMT 0)
Brian:

With severe dysphagia, did your doctor suggest having an esophageal dilation? That may/may not help in your situation.

Sharon
Posted 6/1/2018 6:26 PM (GMT 0)

SharonZ said...
Brian:

With severe dysphagia, did your doctor suggest having an esophageal dilation? That may/may not help in your situation.

Sharon

I did one a few months ago, and he did not suggest I have one. He believes the muscles are weak from long term reflux. The very first endo I did years ago, my doc did do a dilation. But he also said he didn't see anything wrong other than redness. And to be honest, it didn't help.

Post Edited (brianissleepy) : 6/1/2018 12:31:30 PM (GMT-6)

Posted 6/1/2018 6:54 PM (GMT 0)

maelstroms said...
My heartburn/dysphagia means mealtimes for me are hell. I've simultaneously developed a fear of choking, naturally, as I have trouble swallowing. I know a part of it is psychosomatic but a very real part of it is also acid damage to my throat.

Zantac and Prilosec haven't done much, and I hate staying on medications that don't do anything for me.

Do folks have advice/tips for this trouble swallowing- any home remedies, even? Any exercises, tips for keeping a healthy weight, etc.? I've lost about 15 pounds (I had some "winter padding" so I'm nowhere near dangerously thin, but still). I'm currently drinking/eating everything in smoothie form, sometimes my throat doesn't hurt as much and I can get through something like a slice of bread and cheese, etc. but the majority of the time it's a struggle to swallow, and then I'm in fear that I'll choke or something, and on top of it all my throat really hurts.

Has anyone tried anything other than PPIs to help with this? Or even any recipes or foods in the meantime? I'm working with a therapist for the fear of choking, but my GP hasn't been much help- I'm getting a referral to an ENT and a gastroenterologist, but in the meantime is there anything I should be doing that I'm not?

I'm seeing this 3 years later, but how are you doing now? I was going to suggest DGL as an herbal alternative. It coats the throat and helps me out when my throat is irritated. Some people have used it to replace their PPI usage, though I have not taken that step. My GI doc gave me a xanax prescription, which suprisingly, does help with the swallowing as well.
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