My first post and hope you’re all doing ok during this strange time
I have had severe asthma since for around 20 years, now 36. I’m a non smoker. I am on a fair amount of medication, including 300mg Uniphyllin twice daily, Symbicort 200/6 twice daily, Pulmicort and Montelukast. Since January, I’ve now had my 4th (or 5th) lot of steroids for what was described as “crackling” in my lower right lung. I have in the past had numerous infections & pleurisy in that lung too. Since covid, many of my calls with my asthma clinician have been weekly, trying to fix the burning out of control fire. My consultant is unable to see me (the department is closed due to covid).
However, over the past few weeks my symptoms have changed. I choke a lot. Never on food, only when I drink. Sometimes made worse when I laugh, which makes me then cough. But the choking is so bad I’ve been sick. The cough has progressively got worse, I’m more out of breath than I’ve ever been (both inhaling and exhaling feels like I’m breathing through a straw). Today, I saw my asthma nurse as she was concerned. The crackle has now gone from my lower respiratory area (brilliant), but I pointed to where the pain was - almost centre of my chest where my windpipe is. The crackle was now fiercely evident there. No temperature.
I had a chest X-ray done immediately and blood tests done too.
I’m barely unable to talk to talk for more than 5-10 mins without getting out of breath, petrified of drinking which I now use a straw (food I’m a slow eater generally, but taking extra caution still) and can’t stop coughing, along with the general lack of ability to generally breathe.
I’ve been in shielding since beginning of March (as has my husband to protect me).
Anyone else had any similar problems with choking on drinks or any of the above?
Thanks people and stay safe
Written by
Juno51
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Your symptoms, particularly the swallowing, the struggling when talking and the burning feelings (lower and upper) made me wonder about acid reflux. Is that something you've considered before?
It might be worth trying something like regular Gaviscon for a week or so and see if it makes any difference? I think longer term things (as opposed to a bout of reflux after one meal) can take longer to settle but if gaviscon helps the GP might be able to suggest something longer term.
It sounds really rubbish for you, you must be really fed up.
I’m assuming that the breathing issues feel different to your ‘normal’ asthma breathing issues, and don’t resolve with your reliever etc? And that things like your PF (assuming that’s a relevant measure of your asthma) are still in the safe zones for your asthma, and that you don’t need hospital etc.
Have you looked into anything like vcd/ILO/PVFM (vocal cord dysfunction/inducible laryngeal obstruction/paradoxical vocal fold movement... basically the same thing by different names 😅)? Because a lot of your symptoms maybe be down to something like that (the SoB/tightness on both inspiration and expiration, the central location, the talking/laughing issues, the coughing/chocking, and even the swallowing issue could be part of that maybe... the central cracklings could be a form of stridor). Even if it’s been looked for in the past (and ruled out) it could be something that’s developed in the last few weeks - the stress of not being well, but then not being able to access usual care etc, hayfever season if that’s an issue for you etc may have contributed to it, so it might be an idea to do some of your own research and see if it’s something that fits what’s going on from your POV. If it is something like VCD there are breathing exercises you can do to help control the problem, that you can do at home (and give you a sense of control back 🤞🏻🤞🏻)
Equally the burning sensation could be evidence of some reflux going on (another thing that like vcd can be an asthma trigger as well as an asthma mimic), so that may be something to review the next time you speak to someone (I think twinkly29 covered that for me 😅)
Just a couple ideas anyway. Good luck and hope you get to the root of the issue quickly and start to feel better soon!
I was thinking also of the vocal cord problem. It may also be called laryngospasm. I have it. Can close up from water and anything extremely salty or sweet plus anything with a fume such as vinegar and hot spices. Just avoid taking in anything that's not controllable just by drinking something. I can est dr7 things like nuts and crisps but must take in a liquid every few bites or the drug food seems to form a particulate which I inhale. Good luck.
Thank you twinkly29 and EmmaF91 for replying, lots of helpful information
Not sure about the acid reflux, as it doesn’t happen all the time and it’s not really linked to food intake, only when I drink. I don’t drink alcohol, so it’s only soft drinks and mainly water. It’s almost like the water is too fine and then it instantly makes me cough.
Interestingly, my asthma nurse is referring me to ENT I think as I currently can’t see my thoracic consultant. So perhaps that’s her thought process too with the vocal cord issue/laryngeal obstruction.
My asthma has felt out of control since January, I think I probably had a slight chest infection late January which I’ve never been able to get over and with covid it’s got more out of control. It feels a bit like an out of control fire. Steroids help to a certain degree, but as soon as I come off them, it all flares up again.
It has got worse recently though, even inhaling my inhalers all make me want to cough and it is really mind over matter to keep my inhalers inside my lungs!!
I said to my asthma nurse I don’t feel like I’m far away from a potential admission to hospital
ENT (usually look for structural issues) and SALT (usually look for functional issues) are the people to go to to rule in/out both reflux and VCD so hopefully ENT will be able to help.
Ugh. Infections are horrid - especially when they won’t shift (that was my November, tho that was viral so whilst I landed being admitted twice, once I was past the worst of it I could manage at home).
I hope you get to the root of the issue, and not land up needing a&e, but if you do, please go! I (and many others) have had to go during the current crisis and they’ve been really good!
Thank you for all your advice and hopefully won’t need to wait too long for a referral to come through, the choking is scary and the lack of being able to breathe is awful.
My husband is great at keeping a close eye on me too and if we think I need help, I’ll go - had to go at the beginning of breakout and like you say, they are brilliant. Can’t fault how well they look after us
Hi, we are extremely similar! I had recurring chest infections, pneumonia and pleurisy leaving me with chronic cough. After 6 years of constant coughing when temperatures went below 10 degrees I was referred to see cough Professor Allyn Maurice at Hull hospital. He diagnosed chronic cough and irritable airways and prescribed an anti Spasmatic drug called Baclofen. It took a long time to adjust to the side affects as the dose needs extremely slow increase. It was totally liberating, enabling me to leave the house in cooler weather! I’m now taking symbicort 200/6 X2 twice a day, 600mg uniphyllin daily, montelukast,
60mg Baclofen plus 250mg Azithromycin daily. (Very similar to yourself!)
Over the last almost 2 years I too have been experiencing choking! I was concerned it was the anti spasmatic relaxing my oesophagus not allowing food and liquids to be swallowed, I get a pressure about the area of my sternum and it appears stuff gets stuck. I was referred for scans, endoscopes, biopsies and manometry pressure tests. The outcome is that the oesophagus goes into spasm thus trapping food/liquid etc. I had a 24hr tube in to check for acid reflux but all was ok. The final outcome is that they cannot do anything surgically at the moment but will continue to monitor it. I’m really struggling with my saliva and regularly wake during the night choking:gagging on my saliva! It is really scary.
I do hope you get the answers you need, please keep me informed if you have any breakthroughs.
It is a worry when you’re taking a cocktail of different medications and particularly long term.
Sorry I cannot be of more help but it’s nice to know I’m not the only person in this boat!
Hi, that is really similar!! Even our medication is almost the same....!!
Sorry to hear that you’ve had so many issues, but it almost sounds like they are getting some help for you and have been supportive.
Interesting you mention the cold weather, it is one of my triggers for my asthma & the cold air almost sends my airways in to a spasm and it’s so painful and scary.
I had a cough soon after pleurisy, which was after many infections. I then started Symbicort, Slo-phyllin and montelukast - which the combination helped a lot. I then only suffered with the chest infections mainly over winter and generally my lungs behaved. However this January, I must have got an infection, didn’t act quick enough and now it’s spiralled out of control. The cough has returned and the choking started.
I had a call from my doctor today and g X-ray results, thankfully doesn’t show anything. However, not surprising my blood results came back with signs of potential inflammation. I’m back on the steroids & my doctor has started me back on antibiotics. His concern is that the constant choking is causing irritation. I’m now in pain in the right lung, which is the one that had pleurisy and the pain almost feels the same - a dull ache - but now it’s higher up and almost near my windpipe. ENT should be calling me soon with an appointment, my doctor is hopeful they will be able to at least check things and provide some answers.
I did wander about acid reflux, but I’ve never had heartburn & some of the other symptoms I don’t show either.
I haven’t choked today (keeping everything crossed I remain like that! and it does make me wander if the 4 days of steroids are helping considerably. When I’ve been on steroids recently, the choking does appear to reduce significantly. I finish the steroids tomorrow, so I wander how I’ll be after the steroids finish and the antibiotics finish next week.
Thank you so much for all the information and also it’s nice to be able to talk to someone who knows what I’m talking about!!!
It sounds like you are having a really hard time of it.
I have in the past had problems with choking, wheezing, shortness of breath, repeated chest infections but I don't have heartburn. I also sometimes used to get voice fatigue.
I too have seen Professor Alyn Maurice in Hull. I was diagnosed with silent reflux ( Prof calls it reflux cough disease) I don't get heartburn but I sometimes choke even if I haven't drunk anything. I had two Nissan fundoplicatuon operations which helped a bit. The professor has written about reflux cough disease and the mechanism of how they think it works, it's to do with the vagus nerve. If you Google him and reflux cough disease his article explains it well. I was unlucky as I tried the lifestyle changes and medication but they didn't work hence the need for the Nissan fundoplicatuon operation which helped a bit.
I see the silent reflux as an asthma trigger now as I have severe asthma (diagnosed). I made the mistake of thinking that I didn't have asthma but silent reflux which was very reckless. Numerous asthma attacks which landed me in A & E - oops. I am much better now at managing my asthma which has since been confirmed as a diagnosis so be aware of the differential diagnosis, it could be asthma as well as something else not just either or.
I too am shielding as is my husband to protect me.
Hi, sorry for the late reply, I’m feeling a bit better thank you (perhaps the steroids and antibiotics have helped). But generally still felt a bit rough and in turn shielding isn’t helping either, more of the fact I’ve not been able to go out with not feeling well.
Interestingly though, I haven’t choked for a week and it does make me wander if the steroids/antibiotics have been helping. My voice doesn’t sound so croaky either and my cough has reduced, not gone entirely - but still much more improved.
I looked at reflux cough disease by your professor and symptoms, I have many of what are mentioned. So it’s very interesting. Did you find steroids helped? I feel like my asthma has just got completely out of control it’s like a raging fire.
Hope your shielding is going ok
Thank you again for messaging me and for all the information, take care of yourself
I'm glad you are feeling better. I had tests done by the Professor's team to reach the reflux cough disease diagnosis. I think there are a few cough clinics in the UK, so if you continue to have problems you could maybe ask for a referral.
It's a bit difficult to answer with regards to the question of whether steroids helped, I was diagnosed over 10 years ago and I also have other triggers for my asthma not just reflux cough disease.
I have severe asthma & currently I'm on oral steroids again. Hayfever and the dust from decorating has caused my lungs to misbehave. Ironically we are decorating the bedroom and getting rid of the carpet and replacing it with laminate flooring to help my asthma. We have put off doing it for years because of the dust etc but decided to get it done while we are at home 24/7.
Shielding is hard, but when hayfever affects me badly I have to stay indoors anyway. I'm distracting myself when I'm feeling well enough with doing art and watching Netflix etc.
Sorry to hear you’re on oral steroids again for your asthma, it’s an absolute nightmare isn’t it. I’ve literally just spoken to my asthma nurse and updated her on the fact I’ve not choked in about a week, she also commented on the fact my voice sounded so much clearer. I think also the fact I’m not coughing as much is also helping with the pain I was experiencing in the upper part - which was a dull ache, similar to what I’ve experienced from pleurisy in my lower part of my lung. I’m just hoping that perhaps the combination has helped - for now anyway!!
You sound similar to me with allergies too, I take them all year. We even have fake grass!!
I’m finding with shielding my motivation is there one day and totally gone another!! I hit the Shielding Wall!!
Keep up with the art and stay safe too, hope the shielding isn’t too bad for you
Sorry you're having a lot of problems try drinking room temperature drinks as I have problems with cold or hot drinks makes me cough to .I personally think that my medication irritates my throat I take chloraseptic throat sprays every where I go it works for me when I can't stop coughing it's a godsend. Hope you get sorted out soon .
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