I suffer from laryngospasms and have difficulty swallowing help!

[J3334r42]

Hello, currently I’m suffering from difficulty swallowing particularly liquids (food isn’t great either but at least I haven’t had a spasm from it, touchwood). I suffer from laryngospasms which are triggered by liquids (water, juice, anything) These spasms completely stop me breathing and can last for up to a minute, there is not a word to describe the fear and distress they cause. But trust me it’s immense.

So as you can imagine having difficulty swallowing and laryngospasms is not a good combination. So far I’ve been assessed (very briefly) by a SALT (that wasn’t brilliant to be honest, I felt very rushed through) and had a barium swallow test. Both showed ‘NDA.’ However my barium swallow did show ‘minimal laryngeal penetration’ (a step down from aspiration and not as serious as aspiration) and when I asked another doctor about this ‘laryngeal penetration’ he did say it was indicative of ‘mild swallowing dysfunction’ despite my ENT (who referred for the barium swallow) saying my problem was ‘phycogenic’.

But I *know* there’s something wrong, and it isn’t phycogenic. It’s very difficult to describe, but it’s like swallowing isn’t natural anymore. It’s like I’m initiating every swallow which is exhausting and never ending. And to complicate things further I only take tiny (1/ 5ml sips) of liquids through a straw at a time as this makes me less likely to spasm (I literally can’t drink gulps of water or it’s almost certain I’ll ‘go into spasm’) and if I did go into spasm it wouldn’t last as long with smaller sips... So I’m consciously initiating a huge number of swallows per day. Spending hours on end simply sipping water...

So far I’ve been told it’s ‘in my head’, not the spasms themselves but the swallowing problem, I’ve also been told the spasms are ‘harmless’ - harmless or not they’re very beyond terrifying and I definitely couldn’t live like this forever. So many people have swallowing problems, it baffles me why I get these spasms and others don’t??? I wish someone could help me piece that piece of the jigsaw.

The ENT I saw about the spasms said he couldn’t do anything about them, and that was that.

Aside from difficulty swallowing and laryngospasms I lack other ‘stand out’ symptoms. I’ve always had very poor circulation, (Reynauds disease) numb hands feet etc. I sometimes get tingling in my upper right hand shoulder recently. And before having these problems I had shingles, coincidentally these problems seemed to begin during / after having shingles, I don’t know if the two could perhaps be connected??

Whatever the cause I can’t go on the way I am for certain. I’m just surviving living in a daily battle of a swallowing problem, it’s taken over everything. Ultimately these spasms are what makes it that bit ‘too difficult’. You simply cannot understand them unless you’ve had them, but it’s just like choking to death on a grape in your throat - I know it’s ‘harmless’ but your subconscious body just responds to the fact you can’t breathe and in a very distressed way, you can’t override it.

I need help, so far the NHS are not taking me seriously. It’s like they’ve forgotten I exist in fact, lumped off to mental health services who now signed me off and that was that.

My BMI has dropped to 17.2 in a relatively short space of time (due to the swallowing problem) which is very upsetting, and I have tried to discuss, if really nothing can be done about the swallowing issue or the spasms (at least not at present, there’s always hope) ‘enteral feeding’, (a feeding tube) but this has been met with a ‘you’re being ridiculous’ kind of response. But what they’re failing to take into account is the complication of these laryngospasms making swallowing down the wrong way so distressing - it’s a constant intermittent threat. Unlike aspiration pneumonia - though I know this is very serious of course, I don’t mean this dismissively.

I just wondered if anyone could help? Has anyone else had a strange swallowing problem like this in isolation, lacking additional severe symptoms? Does anyone suffer laryngospasms? - what help have you got?

Also, I don’t care what anyone tells me - if either my swallowing problem or my laryngospasms cannot be ‘fixed’ then I’d seriously ‘want’ (in the Hobson choice kind of way) to be tube fed. Because of the laryngospasms as a complication of not being able to swallow properly. Please, if anyone can help in anyway even if only to help me feel validated, I have to live with this and no one understands and I feel so alone x

[Hidden]

Hi there, I feel your pain. I get dysphagia and am terrified of choking and I feel my Adam’s apple is right up in my throat some days then other days I’m fine. Don’t know in the slightest what it is and yes I agree it is terrifying.

Have you had an endoscopy ? Or even a barium meal. ??

You are never alone on here Iwant you to know that and remember it also

Kind regards

Shaun

Xxxxxxx

My name is shaun and Iam male but my handle is a nickname my mother used to call me 😂😂

[Jumpey]

I'm so very sorry you are suffering this way. I have occasional difficulty swallowing due to an hiatus hernia problem which is painful and can be distressing. And I know of another person with far more serious swallowing issues with a more serious hiatus hernia. I was diagnosed by an endoscopy. Have you had an endoscopic investigation? Sending love and wishes for good medical help for you. I hope you have good support in your life. Xx

[Kennydog]

Hi. Ive had a similar thing but after loads of tests my problem was swollen lymph nodes in my throat. The only thing i can suggest that might help is to raise your bed at the head end by about 6 to 8 inches using wooden blocks. It helps keep everything down when you sleep. I went to A and E with swallowing issues and because i wasnt dying at the time they told me to go away and see my gp. It took a good 2 or 3 months for mine to ease off. All the best.