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.
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Beth_19
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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.
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?
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.
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.
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......
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.
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.
"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. "
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.
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.
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.
I'm sorry you aren't getting better care Whiteclouds, but I've had plenty of trouble getting help with severe asthma in my 20s and 30s - and similar experiences for friends of a similar age.
I think it may be more a case of very patchy and often problematic asthma care for all ages in the UK currently. Children come off especially badly - I think the UK is currently the worst in Europe for child asthma attacks and deaths, and most of those are preventable.
There definitely are good healthcare professionals as well as bad, and I've had a mix of experiences (now 38) - including some very similar to what Beth_19 describes. It seems to be due to quite a number of factors, and the more complex you are, often the more difficult it can be. As a young person, especially a woman with a variable condition like asthma, it feels like often the assumption is that I must be healthy because I look young and healthy much of the time, and/or that I'm just anxious because supposedly young women are all anxious and don't have anything wrong physically.
I'd always say to anyone to try, and not give up, and see the GP etc - I hope you get some better care soon. But I don't think it's just about age.
it’s nice to speak to someone who is a similar age, I just turned 39, and having similar experiences. I think you are right about assumptions made based on sex and age, which isn’t great. We will have tokeep advocating.
HI, realised I went off on a tangent with a reply and hadn't addressed your question! I've had very similar experiences in hospital and I completely understand the concern about it taking over if they see VCD/ILO, when actually it's most likely a mix (it is for most people and it sounds like you experience them differently. I also have a sense of what's asthma and what probably isn't, but I feel like there's a lot of variability in whether they trust us to know our bodies).
I've been really frustrated when I've pushed back against 'oh it's just VCD' and been told I need to be more open-minded to things other than asthma. I am but I'm open to a MIX of things not black and white this episode is all asthma or it's all ILO - I suspect a mix is pretty common.
I read in a research paper for work (not a healthcare professional but write about research) that there's a theory upper airway obstruction is actually a misguided attempt by the body to protect the lower airways in severe asthma - so less of a comorbidity and more your body thinking ooh I need to handle this. It seems similar with dysfunctional breathing, which is another thing that I feel becomes very black and white. Your body gets into habits when struggling with asthma, and then doesn't get out of them when it isn't struggling so much.
The more I read about ILO and asthma, the more I agree with you about them being comorbidities and not as you say simple black and white, one or the other.
I am happy to accept and try pretty much any treatment, if it’s going to help because I want my life back, but I’m not willing to be fobbed off when I know I’m not well. Thank you for your reply.
Arrrgh yes, my local hospital are hung up on the idea that I have breathing pattern disorder and my vocal cords are instead of asthma. This is despite low oxygen, bilateral wheeze, high eosinophils unless I'm on steroids. It's driving me potty! Been going on since February. Had 7 emergency trips to resus with 1 occasion that were just about to admit me to ICU.I did a prive consultation to the Royal Brompton and Harefield Hospitals, now there on the NHS and currently waiting for an MDT assessment day for biologics. No question that I have severe asthma. Had a CT scan that showed mild isolated bronchiectasis. Eosinophils have gone up to 600 unless I'm constantly on steroids. The consultant said I have treatment resistant asthma. At the moment only magnesium IV really does the trick in an emergency. Despite this, the local hospital said I gave asthma now it's in writing from the Royal Brompton and Harefield but they want to investigate for breathing pattern disorder at that hospital. I have no interest in their help.
Yes same Beth_19 and @EJS87. I also really object to the lack of understanding and sometimes the judgement I often find about these things. It often feels as if they're assumed to be anxiety-related, that I'm 'overperceiving' and making too much fuss, and assumptions are made about my feelings without asking me. Yes. they can be connected with anxiety but a) you can have anxiety alongside asthma b) ILO and dysfunctional breathing are not automatically due to anxiety c) not everyone's anxiety presents in the same way.
Or there's the assumption that once diagnosed, things like ILO will always be there - not necessarily true if you get a handle on them with help. On the flip side, somehow they can't be got rid of but it's also my fault that I have symptoms because I'm not trying hard enough to get rid of ILO/dysfunctional breathing (after months of physio where I've tried really hard).
Never mind that my nose has been blocked up frequently which is probably why I'm breathing through my mouth more than I should (and it's oddly hard to get anyone to actually help with my nose). Or that you, the doctor, have just asked me to breathe through my mouth while you listen to my chest - which I actually found quite hard - and then told me that's evidence of dysfunctional breathing. Or that actually maybe I still have asthma problems, if I've spent ages working on breathing patterns and still have asthma symptoms that are relieved by Ventolin?
Sorry - a lot of bitterness here! I honestly just really resent the way these things are treated so judgmentally a lot of the time it seems. Then if you object to the judgmental part or suggest that it's not ALL that, you're told you need to be more open-minded about things other than asthma. I do not mind being told I have other things provided someone is helping me with them instead of blaming everything on that. And yes I do also want help with the parts which are asthma.
I can absolutely understand your bitterness, it is so frustrating when we know our bodies and someone else says they know better because they have looked at us for 2 minutes.
I finally got my letter from the consultant to see exactly what she has said and at no point did she say I don’t have asthma, but that “not all of Beth’s symptoms can be attributed to asthma and it is likely there is an element of ILO contributing to some symptoms.” She has also said about getting more tests (bronchialdialter tests) and sending me to speech pathologist and resp physio to further investigate. She also clearly stated in the letter that I already have an excellent understanding of breathing control and trying to manage symptoms with breathing techniques.
So to me the doctor from A&E very much looked at the letter saw ILO and decided I was a panicky lady.
I saw the asthma nurse at the GP to get a new asthma plan and she was great. She said she has just come back from a course about lung conditions and it was really reiterated the importance of treating the patient as an individual as lung conditions present in such varying ways and people learn how to over compensate and live with conditions in ways those without lung conditions can never appreciate. They said it was so important to listen to what the patient was describing and not just what you see on the screens, which I thought was great.
Your GP sounds great, and honestly it sounds like a well-balanced letter from the consultant too. But some people definitely see one thing and fixate on it, which can be quite worrying and frustrating.
Unfortunately my consultant writes awful letters - which are totally different from what was discussed in clinic where occasionally he is reasonable. In the letters he comes out with all sorts which we haven't discussed and I have no chance to say anything about.
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