Upper Airway Disorders

[Beth_19]

I’ve just gotten back from a weekend stay at hospital for my chest. It was a bit of a mixed bag to be honest with one doc wanting to send me home nearly straight away because “it’s all in your throat and you are panicking” to “yes so your chest X-ray showed some white shadows at the bottom of your lungs and your white cell count is raised, please proceed to the respiratory ward”. Antibiotics, steroids and nebs, coughing up some yellow grossness and I made progress to be discharge home.

Anyway on talking with the respiratory doc he mentioned about having upper airway disease as well as asthma. I’ve had a quick look into it and some of it does explain some of my symptoms like my chronic cough and throat clearing, but not everything like the tightness and wheeze at the bottom of my lungs.

Has anybody else been investigated or diagnosed with this? What has been your experience?

Given how one of the doctors reacted it makes me more fearful of my asthma being dismissed when I am having trouble because I can maintain my oxygen levels well, though I did have several dips into the 80’s (witnessed by mum) which they would ignore and come check on me after I had a good cough and got my levels back up.

[Homely2 Administrator]

I did a provocation test where my lungs tightened very quickly, so my consultant worried that I had an ILO, as well as asthma.

I saw a respiratory physio, who went through my types of breathlessness with me.

She divided my attacks into, traditional asthma, just being knackered, and ILO.

My traditional asthma attacks, were cumulative in nature, best controlled by fostair 100 mart and alvesco 160, and she said my control of the asthma was poor.

The knackered breathlessness attacks, were best controlled by fostair 100 and rest, and I had to learn to pace myself better to avoid them.

My ILO attacks, were very sudden, caused per my physio, by all the asthma attacks making my system overreact to lots of things. The ILO did not really like fostair 100, was controllable by breathing exercises and salamol.

This splitting out of my various attacks I have found very helpful and the breathing exercises have helped to very significantly reduce and control the ILO attacks, and have helped generally with the asthma and knackeredness.

For me, the ILO, has been talked about by the medics as a natural result of having so many Asthma attacks. For medics who do not understand asthma and ILO, I keep the latest consultant letter in my wallet.

[Beth_19 in reply to Homely2]

Thank you @Homely2 that is very useful information.

I have been referred for more tests so hopefully they will do something similar. Reading up on the information it does seem likes it is possibly something I do have as some of the symptoms really do fit, so if I can get help in identifying the differences and what works for me that would be great.

Can I ask when you get the different breathlessness do you actually feel it in a different areas of your lungs? If you understand what I mean by that question e.g the asthma feeling is meant ot be lower down in the lungs, ILO in the upper chest throat region?

[Homely2 Administrator in reply to Beth_19]

Good question. The medics want this very clear distinction where my asthma is in the chest and the ILO is more in my throat.

To me the difference is more in the speed of the attack. If I walk in the cold night air, my throat and chest can seize up in seconds. That, for me is an ILO, I can normally free up my system with breathing exercises, but if it gets frightening I reach for the salamol.

While my asthma attacks, can be quick, but not as quick, but you feel them coming on , and they are much harder to shift than an ILO and need fostair 100.

The asthma is more chest based than the ILO, but when I cannot breathe I frankly do not care about analysing why.

We are all very different, but to me the key is understanding all the different that things that cause you issues and how to handle it. It has taken me three years and I am slowly getting there, so talk to any medic you can and build up your knowledge of what works for you.

Chatting to the asthma UK helpline, doing their asthma breathe easy online course, have all helped me, broaden my knowledge.

[Beth_19 in reply to Homely2]

Thank you, that is absolutely fascinating as I can relate to a lot of what you have described.

With this asthma attack the doc who wasn't the best was talking about my throat and only listened to the very top of my lungs even though I explained to him that while yes I had a cough the actual tightness and breathlessness was very much at the bottom of my lungs not my throat. When I saw another doc she listened to the back and base of my lungs and heard the wheeze (which is a new thing for me cause I've never been a wheezy asthmatic).

I have felt tightness in my upper chest and throat areas before too but didn't realise that it might be a seperate condition. I really appreciate you getting back to me as that has been very informative.

[peege]

Very interesting post and replies so thank you both - as I didn't know what ILO stands for a search reveals it is: Inducible Laryngeal Obstruction (for anyone else who's interested to know). Now to research a little more......

[Beth_19 in reply to peege]

Thank you. I'm off back into the rabbit hole about it. Its been a fascinating read and I think they might be right about me having it, but I am concerned that they are going to use this as an excuse to try and dismiss my asthma as a cause for anything. Oh well knowledge is power and we will see how it goes.

[Tugun]

I am thinking about your original doctor who diagnosed you with panic and "it's all in your throat". Did he/she know of their misdiagnosis? I have come to believe that the majority of doctors don't know about the mistakes they've made and unfortunately continue to make them.

VCD (Vocal Cord Dysfunction) is also called Inducible Laryngeal Obstruction (ILO), Paradoxical Vocal Cord Movement (PVFM) and Laryngeal Dysfunction.

The following came from the European Respiratory Journal 2017 . This was a minor section of a very comprehensive article on the research to date(2017). The consequences of thinking it was an anxiety or panic problem was that people were not comprehensively checked out.

erj.ersjournals.comcontent/...

"Others have claimed that VCD (now referred to as ILO) represents the physical manifestation of underlying psychological problems [68]. These statements have been disputed, with the authors arguing that the tendency for panic observed in some patients is caused by the choking feeling of laryngeal collapse during heavy exercise, rather than being the cause of EILO [2] [(Exercise-Induced Laryngeal Obstruction)]. These complex issues need to be addressed in properly designed studies.

Doctors are still learning about ILO and there is still research being done on it. For example I wonder if the breathing exercises which help may also be similar to Buteyko which also helps asthma. In the following statement from the site Allergy Capital, it says that it doesn't respond to asthma treatment .... and yet it can:-

"It is estimated to occur in up to 2% of acute hospital presentations with difficulty breathing and round 2/3 have had a previous diagnosis of asthma. It can be mistaken for asthma but does not respond to asthma treatment and can be associated with side-effects from excessive asthma medicine use.10 June 2020 (Allergy Capital)"

I'm not sure which asthma medication they are referring to but I can't take preventers so only use salbutamol (powdered form) daily and when the asthma is worse I take what I need to survive. So far no bad side effects. ( I have been taking it for 45 years). My excessive use has not caused VCD /ILO. As with all things, there is no one size fits all. We are all individuals and react differently. All I can say is "Listen to your body and what works for you. "

[Beth_19 in reply to Tugun]

I don't know if he knew or not because I didn't see him again after that as another doctor took over my care and got things moving along. The thing I tried to explain to him is that I do actually know the difference between a panic attack and an asthma attack I've had several of both and I know how they make me feel. I also know the difference between feeling it in my throat and feeling it in the bottom of my lungs. Plus I did respond to the treatments given for asthma. I did respond a little to my inhalers when I took them at home too, but it didn't last long enough so off to hospital I went. Nebs helped as well but again it didn't last so needed them over a sustained period of time (something like 36 hours) and then it started to settle. When it started getting tight again then I tried my inhaler first and that helped so didn't need another neb. I had an increase in my peakflow after I had taken my inhaler. Saline nebs helped loosen the mucus so I could cough productively instead of feeling like I needed to cough something up from the bottom of my lungs and not being able to. That to me is asthma not ILO. However, my chronic cough and throat clearing acutely when I change temp etc that fits with ILO.

When my asthma kicked off again back in 2016 I took on board every possible treatment they offered including physio and psych team inputs, because I wanted to do everything I can to control this. I still use a lot of the methods I was taught then.

I know asthma is a hard condition to treat because it can be such a diverse condition and we are all individuals who respond in individual ways. Thank you for your research it was very informative. I love this site for that.

[Whiteclouds]

hi I found if you are of a certain age over 50 the medical health care tends to fob patients off with use your inhaler. When I was younger I had similar issues to what I get now but got better health care nebulisers to clear my air passages oxygen and anti biotics now I’m much older they don’t invest in people my age. I gave my all working all my life and paid all my insurances and nhs now when I need to use it there’s no funds left for the oldies of yester year. So if you are young do go see your gp to get the issue investigated as you will receive help.

[Beth_19 in reply to Whiteclouds]

I find that they get stuck on the O2 levels for me. I will be oxygenating well so they will say "oh your O2 sats are fine" and I am like yes because lots of asthmatics don't desaturate until much later and by then we are in serious trouble and plus with the amount I am coughing I would expect my levels to be high. However, I will be sat there gasping for breathe, unable to talk in sentences or at all and coughing, feeling like someone has grabbed a hold of my lower lungs and squeezed them tight, so I know I'm not well.

I'm back under the Respiratory Team as I had 3 lots of steroids in a year and now I have had 3 hospital admissions in 1 month. They are referring me for more tests including for upper airway disease so hopefully we will get to the bottom of it.