trouble swallowing soft things (trigger warning choking and gag reflex)

[TinyPairsOfSocks]

Hi,

I wondered if I could ask for some advice about a swallowing difficulty?

Sorry it's a bit completed.

I have this problem where swallowing just doesn't work quite right. I can swallow hard things like thin slices of oven-roasted potatoes (crisps effectively), or roast meat, but I really struggle to swallow soft things like mashed potato. I also find it hard to drink water and have to really concentrate to do it. I can drink 1.5L of water really quickly if I am in a hot bath. The back of my mouth always feels gluey because I can't seem to swallow fluids properly.

It feels like I do fine at the actual swallow action in my mouth, but then the food just sits back there in my throat and doesn't immediately make its way down the pipe. I'm wondering if my throat is meant to do something automatically back there to propel the food downwards, and if it is maybe forgetting to do that?

With hard things like a piece of roast meat, when they get stuck at the back there, I can just swallow hard and it makes its way down. But with mashed potato or anything soft like that it can just set up camp and be really alarming back there next to my gag reflex.

I went to see a gastroenterologist 18 months ago, and he said my endoscopy was completely normal. He said I likely have a problem called rumination syndrome and that my gut is really really tense, which I can totally believe, but I'm not sure if that also affects my swallowing right at the top of the eosophagus.

I also saw a cardiologist about dysautonomia, and he said to eat more salt, so I am doing that every day, and drinking lots of water.

I wondered - do you think that I could be so tense that my throat forgot how to do the automatic swallowing thing?

I also have quite a low iodine diet because of food intolerance and because suplements cause really wild side effects for me. But I can eat alaskan pollock and I try to do that every day to get iodine. I have no other symptoms of goiter.

I think the swallowing problem was kicked off by long covid and it got worse with a course of antibiotics a while back. It then got better again with antifungal medication and with sorting out some really bad stress stuff.

I think I am a bit short of vitamins and minerals because supplements always disgree with me and my diet is quite restricted because of intolerances.

I would be really grateful to know if anyone has any ideas.

Thanks!

I have a similar swallowing issue triggered by Covid and also the dysautonomia/ POTS (Ehlers Danlos too)
swallow study showed oesophageal dysmotility but endoscopy and manometry etc were fine other than a sliding hiatus hernia. So no real answer. Issues slightly improved but still very annoying. Struggle to swallow enough water to make the salt and fluid regime for POTS work so onto medication.

no actual ideas just sympathy, sorry!

I have a relative that was diagnosed with Achalasia:

https://my.clevelandclinic.org/health/diseases/17534-achalasia

Upper endoscopy often isn't sufficient to make a diagnosis.

Could you ask your GP for a referral to SALT instead?

I also have dysphagia caused by Ehlers-Danlos, and I cannot eat potato at all as it's a texture I just can't swallow. Mine is caused by GORD though (LPR technically but it's all just floppy tissues).
Have you tried taking a PPI? Silent reflux doesn't always show on an endoscopy.
My swallowing issues just appeared one day and got worse and worse. Your post stood out because soft textures are very difficult for me and harder ones I could always swallow. I was almost convinced it was some sort of issue in my head until a doctor realised and put me on a PPI.

Thank you for discussing this. It's a bit yuk, and I feel nervous talking to even medics about it because I know even my GP didn't want to talk about it.

My Mum had the Achalasia thing. She had to be in intensive care for a month after she got bacterial pneumonia because of it. She had the proceedure where they inject botox into the part of the eosophagus right next to the stomach and that sorted it, but she can't lie flat any more because I think maybe the sphincter doesn't work any more. I remember that for about 20 years before that she couldn't intentionally open the sphincter at the top of her stomach to let gas out, so that is a very clear sign of what was going on. I don't have that problem.

The thing that I have certainly feels as though my eosophagus isn't emptying properly like that at the bottom, but the gastroenterologist assured me that I didn't have that. I didn't press him on it and from reading that website, it's sounds as though maybe he couldn't be certain with just a gastroscopy.

However, I have noticed that if I do special relaxation exercises on that part of my stomach then the problem does get better. If I breathe in and then concentrate on my stomach sort of breathe out the tension from that part of my body, then the swallowing gets better. It hasn't solved the problem, but it does get better. I also find that if I run up and down the stairs ten times then my eosophagus empties suddenly and I can swallow normally. The problem also temporarily resolves if I sleep lying in exactly the position that opera singers stand in. My GP suggested that.

I'm wondering if I've somehow managed to somatise a truck load of tension into my eosophagus muscles and made them give up doing their job properly, and if that coupled with bad posture might be messing me right up.

I do have a lot of problems with somatised tension and I could totally believe that I have done this to myself.

Could it possibly be Sjögren’s syndrome? Have a google.

@QwestSprout That's really interesting. I did try several different things like PPIs, but I got bad side effects that were worse than the problem they were trying to fix.

I don't know why but I seem to react badly to all drugs and supplements. Post-covid I keep getting throat swelling reactions to loads of things including antihistamines, antibiotics and pollen in the air outside, and I also react wildly to all vaccines, and eggs and milk and whathaveyou.

I feel like a bit of a wreck tbh.

My DS is out of school with anxiety (cPTSD from toddlers year medical trauma) and I'm trying to model swan-like calm for him, so he can feel that life is safe and become calm himself. But life doesn't feel very safe really with so many medical problems and with the NHS so stretched.

But maybe I'm just really stressed and that is what is causing it. It's hard to know.

@Pigeonqueen I don't think it can be that as I don't have joint or muscle pain but thank you for suggesting it.

Tbh I think that what your saying is probably what I'm thinking. Maybe it's stress related reflux. Maybe I just need to become more swanlike.

reading your update I wonder if it might be mast cell related?

@gynaeissue Thank for asking. I did read up about mast cell disease, but it seemed to have very extreme allergic symptoms and mine are okay actually. I mean, I can't eat eggs and milk and I have to wear a hepa filter in my nose to go out, and can't take any drugs, but nobody would know there was anything wrong with me if they saw me in the street. When I read about the mast cell illness it sounded really dramatic and as though people would be instantly hospitalised by it.

Is that right or am I misunderstanding?

Thanks so much for reading all this. I'm really grateful to you for taking the time.

I had to dash around all the time faking that I am fine and it's a bit scary tbh.

Oh, I also have to wear an n95 mask if I go inside buildings, or else I come down with gastroenteritis symtoms 5 days later, which then stay for 3 months.

I also get instant abdominal migraines from exposure to LED lights.

I'm so awesome. Not.

Thank you very much for all the ideas here and for letting me get it off my chest. I'll go away and think about all this and ask the medics.

Same! GI doc said ‘that’s not possible’ when I said my swallow mechanism just chooses not to work sometimes 🤔 later followed I have hiatus hernia (so could be reflux related) and an autoimmune disease so could be to do with that too.

Something that might help is a swallow drill - stick tongue out, swallow 3x in a row. Near impossible to start with but practise couple times a week.

Have you tried yoga OP? Sounds irrelevant but actually it's so good for relaxation of muscles, meditation might also help.

@georgepigg Thank you very much, I will try that.

@MissyB1 Thanks for the suggestion. I will try to do that. I have this book called something like "exercises for over 40s" and is wonderfully undemanding. DS and I both feel better after we have done a little bit of it. Maybe we should start doing that again.

I just realised that we are also recovering from the norovirus (2 weeks ago) and my period is due today. So basically everything is wrong just now.

It's no wonder I have been physically defeated by mashed potato.

Speech therapist here. You need to go back to your GP and ask for a referral to neurology. Swallowing is controlled by specific centres in your brain. There is an automatic reflexive element and an element that you can control.

Well, I'm not medical at all but have had a couple of relatives with swallowing issues (all 3 were different reasons. For one relative no cause was found and stress was suggested as the cause. As soon as she knew there was nothing physically wrong, and she made an effort to try to destress, it improved a lot). From the things you've posted, particularly this post, it sounds to me like you may have some health anxiety?

I really think you are overthinking everything. You say you can eat alaskan pollock, and try to eat that every day. This really doesn't sound like a post from someone with normal eating habits, sorry.

@jellymaker Thank you very much for saying about that. What would the neurologist do? I did see a neurologist privately about my LED light problem but she just talked non stop for an hour and didn't really listen or solve any of my problems and then charged me a ton of money. I would be a bit nervous of trying that again. The one thing that she did say was that long walks would help my balance, and they did. Maybe long walks would also help swallowing, since running up and down the stairs does?

@CurlyhairedAssassin yes I really struggle with anxiety round my gag reflex. I've been seeing a clinical psychologist about it for about 10 years but was discharged a while ago because I'd developed a hide like a rhino.

However DS then fell to bits, and I'm having to cope for him now, and it's constant and demanding work.

No my diet is a mess. I know that. It's quite hard to have a normal diet when I have allergic reactions to practically everything. I would like to fix that, but I can't.

I do think it's probably stress tbh. I will go away and become extremely Zen.

<and relax>

the gastroenterologist assured me that I didn't have that. I didn't press him on it and from reading that website, it's sounds as though maybe he couldn't be certain with just a gastroscopy

My relative had half a dozen endoscopies over the course of a year (along with additional tests) before being diagnosed. Achalasia, like many swallowing disorders, can't necessarily be visualized with a scope. Also, it's thought to "run in families", so if your mother has it....??? I think I'd get a second opinion.

BTW, my relative had surgery which made the condition quite manageable. He eats and drinks normally now and has been stable for 10+ years.