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Achalasia - anyone else here with this?

(12 Posts)
Wolwol Mon 10-Apr-23 20:36:24

Mostly not too bad with it, but last and this month have really interfered with usual life.

If you have it - and I know it is different for each of us - would you like to share tips, perhaps good and bad days?

Just a thought smile

FannyCornforth Tue 11-Apr-23 03:53:34

Hello Wolwol
I admit that I’d never heard of it (it’s a disorder of the oesophagus).
It sounds horrible, you have my sympathies.
It’s very rare (1 in 100 000 people in the US) so I doubt if you will get many replies.

nadateturbe Tue 11-Apr-23 04:54:35

My husband had a problem that sounds like this in his late twenties. Sometimes food would get stuck and we had to go to A&E. He had an operation to widen the esophagus. Until the op, he was very careful about chewing food. It happened mostly with things like steak.

Wolwol Tue 11-Apr-23 21:37:03

Thank you, it's kind of you to reply. Fanny, thanks for looking it up, it is rare. Nade, that's interesting, I do hope your husband is fine now. It is not nice to feel stuff is stuck.

I thought it was worth asking, just in case another 1 in the 100,000 is here and would like a chat 😊 Unlikely but not impossible.

I'm lucky to have found a good monthly online support group, but sometimes it would help to vent/explore stuff more regularly/casually.

Again, thank you.

nadateturbe Tue 11-Apr-23 23:06:58

Has your GP not suggested having treatment Wolwol?
I'm pretty sure my husband had the same thing. The treatment cured it.

Wolwol Tue 11-Apr-23 23:52:15

Thanks, @nadateturbe. I'm on a waiting list for surgery. Also thanks for looking it up 😊 Surgery mostly seems to be an alleviation not a cure, so I'm really pleased your husband's OK 😊

pooohbear2811 Mon 08-May-23 09:25:48

Hi, well there is at least 2 of us. I had a provisional diagnosis about 6 weeks ago after having barium swallow xrays, awaiting an endoscopy under GA to confirm it.
A bit of background that led me there - I have had MASSIVE problems with my asthma for over 2 yrs now. Persistent cough, chest infections, coughing up phlegm 24/7, hoarseness, pain in my back left side ( thinking pleurisy) but ever test respiratory ran came back normal. Lung CT showed lungs clear, huge doses of inhaled steroids making no difference, oral steroids pointless etc. Can assure you what I have cannot possibly come under the category of normal!! Lost my job through being unable to function.

Constantly hoarse, feel like I have something stuck in my throat 24/7, coughing when eating and struggling to swallow. ( annoyingly despite all this I have not lost weight)

So with months between respiratory appts I had read that GERD and such can cause issues with cough. So GP agreed and sent me for an endoscopy, thinking we could rule this out as a cause. I could not swallow the camera, just gagging on it, but then I can't clean my teeth without gagging. Dr doing it as a day case lost the plot with me, and a complaint was put it, but that's another story.

Anyway had the xrays which showed various problems, went back to see the specialist and he explained the reason I could not swallow the camera was because of the achalasia. This made me feel a whole lot better. So going to do an endoscopy under a general for further investigation.

Apparently, the difficulty with swallowing and the lump in the throat feeling do not show up on an endoscopy anyway, but now they know of it they will do other searches in my oesophagus when I am in.

For me while getting any diagnosis is not good, rare and no cure even less good, but to actually be getting some answers is a massive relief. This for me explains away a lot of what we thought were asthma symptoms as well. I did not know that your oesophagus can produce masses of mucus that you cough up, this for me was where the infection was not in my lungs. Better than believing I am going mad and my head is making it all up.

Once I have had the endoscopy this specialist is going to send me across to gastro, who would perform this test anyway, but there is quite a wait for them.

I have found a facebook group where reading other people's posts has been a great help.

Sometimes it is not nice to be rare, but 2 of us in the club is a

Wolwol Wed 24-May-23 11:45:27

Apologies @pooohbear2811, I thought I'd get a notification if someone added to this thread, so wasn't checking...
What an awful journey you’ve had to get this far. Achalasia is rare enough that even medical professionals may not be aware of it. I was lucky, my GP suspected a hiatus hernia so sent me for a barium swallow and endoscopy, so I was diagnosed properly first time, two days before the first UK lockdown... I'm part of a group that has specialists associated with it, and online group meetings to discuss aspects - recent one was about keeping the oesophagus healthy. There are also monthly online support group meetings which I've found really useful and helpful. I too am part of a Facebook group, but I'm a bit rubbish with fb and don’t check regularly - I'll try to change that now!
Yes, no fix isn't good - it took me a while to understand that surgery and other interventions would only alleviate and may need to be re-done. I am finding things that help though, especially being in touch with others, so two us is good, though I wouldn't wish achalasia on anyone.

Namsnanny Wed 24-May-23 12:18:55

My husband has had difficulty with his throat in the manner you describe poohbear
Coughing, infections, ect.
He eventually had an operation to keep a flap of skin in his throat in place because food was getting into his lungs and obviously causing infection
It has helped, but this is really something he has to live with.

pooohbear2811 Wed 24-May-23 14:43:19


My husband has had difficulty with his throat in the manner you describe poohbear
Coughing, infections, ect.
He eventually had an operation to keep a flap of skin in his throat in place because food was getting into his lungs and obviously causing infection
It has helped, but this is really something he has to live with.

glad they found a cause with him, and an op has made a difference, though as you say "learn to live with it".

pooohbear2811 Wed 24-May-23 14:52:20

no apology needed Wolwol.
Had a successful endoscopy earlier this week.
Shows an oesophagus motility disorder, a reduced oesophageal peristalsis which fits with my symptoms of dysphagia, nausea and vomiting, and also confirms the diffuse oesophageal spasms picked on on barium swallow x-rays. Also shows bile reflux in the stomach.
Been referred back to my gp with a recommendation for Gastro to see if there is anything else they can do to make life better.
Will go look for the UK facebook page.
How would be access the monthly online meetings?
For me if I could just get rid of the sputum and stop the constant cough I could probably live with the rest. But suppose we all have different wants depending on what we perceive to be our worst symptom.

Namsnanny Thu 25-May-23 23:52:31

pooohbear Re your last paragraph, my husband has found cider vinegar in warm water 3 ish times a day has helped with that.