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Struggling - swallowing issue surviving not living

J3334r42 profile image
8 Replies

Hello all, I’ll keep it short as possible as it’s a very very long and ‘complex’ situation.

Basically I’ve been having problems surrounding swallowing. I get laryngospasms - these cut off breathing for a short time and although they won’t kill you they’re absolutely awful. Simply drinking can easily set these off.

My issues as still being investigated. My throat was found to be very inflamed so I was prescribed indigestion meds - they helped a bit but I’m still struggling.

Time wise it takes me about 5 hours consistently drinking to hydrate each day and I won’t be alone when I am because I simply feel too scared about ‘spasming’ alone. I can’t be distracted, can’t even watch TV or move my head etc. Definitely 100% can’t work a normal job etc. It’s exhausting.

I enjoy life when I’m not hydrating and try to hold down my minimal hour flexible small business. But I’m almost considering giving that up as time is such an issue. I try my utmost to feel positive and when I’m out and about away from this I’m happy, but I’m tired of living my life *around* this and having this dark cloud over everything, when I should be enjoying life, instead I’m stuck sipping through a straw for hours and hours on end.

I honestly don’t know what the answer is here, I am surviving but definitely not living life to the full and I just wanted to voice my problem because of course it gets me down.

I fully acknowledge I have mental health problems in conjunction with this, but I feel my feelings surrounding the spasm and time issue are valid, is this really something I should just get on with at the expense of an actual quality of life? I’m genuinely so confused right now.

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J3334r42 profile image
J3334r42
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8 Replies

Hello and Welcome

You need to discuss the problem with your Doctor.

Something like this may be something to do with Anxiety, although your Doctor has explained to you it is down to inflamation in the throat.

If there is something causing this ? are you playing or poking the back of your throat. Adenoids and Tonsles can become inflamed and cause severe problems if you are an Adult. If you are looking down into the mouth the tonsles sometimes form what looks like white berries are formed within the structure of the tonsle and they do eventually loosen and either go down the throat or can be spat out.

I really do not know what to suggest, your Doctor needs to inspect that are.

Have you tried mouthwash ??

BOB

StoicismHelps profile image
StoicismHelps

Hello. I recognise these symptoms, which you describe so eloquently. You have a gift for writing:

"I get laryngospasms - these cut off breathing for a short time and although they won’t kill you they’re absolutely awful. Simply drinking can easily set these off."

This runs in my family, but it's worse for me as I have a hernia that puts more acid in the oesophagus and inflames it if I don't take my meds. I'm glad you have medication to help - and I think it will. If you keep talking to your doctor they might give you stronger anti-acids (and some are now available from the chemist) to help reduce the inflammation. It can take a few months to heal, up but it really helps when it does.

The link between anxiety and more acid production and the dysphagia you experience is disputed. But my experience is that when my anxiety flares up so do the other two.

I have had similar spasms on and off for years and I have got used to them. With treatment, that really astonishing choking just from drinking gets much rarer. Since the instinctive reaction to feeling that you are choking on your food is to drink to flush it down, it's infuriating that the water simply won't go in and bounces back!

Actually, we are not choking (the food or drink is not in the windpipe) and are in no danger at all: we are just scared because the spasming feels like choking and we know choking can kill. And those with us are trying to get a drink down us.

I never eat bread, chicken or raw carrot without water. Restaurants and food pubs in the UK are now better at giving you a jug or pint of water which I get straight away before I start eating. A snack on the go always has to come with a drink. I also have got to know which foods, like pasta with a sauce, are less likely to kick it off. My wife always has her eye on me and will run to the kitchen and get me a drink (I've usually already emptied mine!) but doesn't try to make me use it. As you say, sometimes, it won't go in.

I have learned, even when the room is spinning and I think I might pass out, that I am in no actual danger and the spasm will run its course. So I hold on to the chair or table and try to think forward to the other side of the spasm and breathe through my nose. And before I know it, I am back with the world. Over time, they have got easier to manage and I am much less anxious about them which is a virtuous circle. In fact, I can quietly cope with them without anyone notice often. Sometimes I get hiccups and burps for the rest of the day.

My key messages:

- Get guidance from the doctor and possibly an X-ray or endoscopy with a camera to check for blockages (which can be cleared while you wait) or any other problems.

- Persist with any medication they give you.

- Remember you are not choking and you are safe, even though it looks to others that you are choking. The food or drink is in the right pipe (oesophagus) which is in a temporary spasm and will sort itself out.

- As soon as the spasm stops, the food will go down.

- Resist the temptation to hold your breath (I haven't managed to do that much yet).

- Never sit down for a meal with a drink. It is reassuring to know it's ready if needed. Have a buddy if possible who is cool with you grabbing a sip of theirs if you have run out, or just stop eating until you have a refill ready. The reduced anxiety from this really helps.

- Get used to the foods and circumstances that can trigger it and you might just find concentrating on your breathing and a preventative sip of water stops it in it's tracks.

HAVE HOPE - BETWEEN YOU AND THE DOCTOR IT CAN GET MUCH LESS BOTHERSOME. IT USED TO REALLY DISTRESS ME BUT NOW IT'S NOT MUCH OF A WORRY.

Very best wishes.

Alan

Klaus-sperger profile image
Klaus-sperger in reply to StoicismHelps

'Never sit down with a meal WITHOUT a drink"(you typed WITH).Fantastic advice,I feel huge sympathy,I never knew this apalling problem existed. I feel less sorry for myself with psychotic depression. But at least there are pills for my depression, how awful for you.

J3334r42 profile image
J3334r42 in reply to StoicismHelps

Thank you so much Alan, your answer gives me hope. I’m so glad its got easier for you. It’s a catch 22 at the mo because I spend all day drinking and eating but what for - to live, but that’s ironic because what kind of life is doing this everyday if that makes sense!! But I hope with medication things may improve. I’ve got some tests to have done and I’m open to whatever to try to make things better. 👍

StoicismHelps profile image
StoicismHelps in reply to J3334r42

Hang in there. I'm doing OK at the moment, but there was I time when it was impossible to conceive that I ever would. By the way, my sister had the same problems but has no hernia. It took a while to find out what she is allergic to and now if she keeps off those things she get none of the symptoms all! It's weird because you would expect an allergy to have always been obvious not just at one point in life.

The allergy line is hard to investigate because there is a time lapse between trying something and having the swallowing problems. But she is very glad she pursued it. I have discovered, for instance, that the sudden feeling of doom and gloom I would get in the middle of a roast dinner was an allergy to the celery in the gravy. Different gravy granules = happy roast dinner. Good luck with your investigation and feeling better when you have got further along this journey. It IS worth it.

Klaus-sperger profile image
Klaus-sperger

A terrible awful situation, you should not put up with it,(who could?)Carry on with medical investigation ,inflammation can be removed.

Spasm throat they must have medicine that may help?as many drugs are anti spasm.Some are used in epilepsy to stop muscular spasms and fitting.

Also anti spasm in colon with pills over the counter for I.B.S. ,diazepam loosens locked muscles. So please keep medical investigation going,who knows it could be a simple allergy where you chuck wheat or milk from your diet and magic occurs?

Coolsfancy profile image
Coolsfancy

I can relate and sympathize.

I have a rare stomach disease 🦠 that is totally taken over my life.

I can’t eat anything without getting 😷 sick.

It’s beyond Gerd .

I find out today with my surgeon what the next steps will be.

I’m sending you prayers 🙏

hypercat54 profile image
hypercat54

Hi I understand a bit coz I think I have that too. At first I put it down to my asthma but I don't think it is. As far as I understand it is that your swallowing function (sorry can't remember the technical term) isn't opening enough so taking food and drink exerbates the problem as it cuts off your breathing for a short time.

Mine is nowhere near as bad as yours as if I am very careful to only take a very small first bite slowly it's fine. I have had the choking sensation a few times and my throat spasms and cuts off my air flow. This is very frightening.

I hope you get your medical issues sorted. Oh try putting your criteria in the search box and other posts and responses will appear.

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