I have suffered from asthma since I was a child, always viral based that lands me struggling for anywhere between several weeks to months post viral. I am now 5 months post a very minor cold, and I am loosing the will a bit! Every single second of every day for the past 5 months I have struggled with breathing, feeling wheezy (but not sounding it), intense pressure on the chest, coughing, and sometimes chest pain.
Chest CT, X ray, lung function, O2 levels are all fine (and usually are since adulthood). I don't 'sound' wheezy when I am listened too, and I rarely produce any mucus when I cough.
I used to be on seritide, then changed to fostair 100, then Combisal, and now fostair 200. I tried montelukast no luck. I have just started Spiriva, too soon for results. When I was younger oral steroids used to help me get over an attack, where as now they don't make a difference.
I want my life back I am only 24 and almost half this year I have been sofa bound in and out of a&e where they tell me I'm fine? It makes me never want to be around people with the fear of getting a cold if this is the repercussion.
Has anyone had any similar symptoms and had any luck? It's only viral based asthma but then it does not go and is hideous 24/7 until it clears up, but this time it hasn't cleared up and I am worried I'll be like this forever
I am starting to see an asthma physio for breath work. Any words of encouragement or positivity would be great
Thank you <3
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perryg1
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Seeing a respiratory physio is the best way for you to go.
I was diagnosed with a breathing pattern disorder recently. A new consultant recommended I see one in his department and I was given breathing exercises and shown how to breathe correctly. It was life changing for my asthma. I was the same as you, A & E trips and normal oxygen levels in blood. The problem with breathing incorrectly, is the carbon dioxide can drop too low and this inhibits the blood releasing oxygen into the organs properly. So the blood still registers normal levels, but all of these symptoms come along. It causes shortness of breath (for me extreme,) tiredness, anxiety etc.. There are so many percentages of people in the general public who have a breathing pattern disorder, but a higher percentage of in an asthmatic group of people.
Mine is triggered by my asthma (as it obviously alters our breathing pattern) or if I am anxious or I fall back into the old way of breathing. There are different types of breathing pattern disorders also. What I wasn't doing, was to correct my breathing once my asthma was back under control.
I wish you luck seeing the physio and I really hope it works for you, like it has for me. You have to take your time learning it, if this is what is happening with you.
Obviously this is my own personal experience and I have never met anyone else who is diagnosed with it. I was previously over-medicated, on regular prednisolone tablets and had a home nebuliser because it affected me really badly. And they put it all down to atypical asthma.
Hi Phoenix1992, so glad to hear you've found what works for you! It's definitely a thing that can happen and you make some good points re this happening alongside asthma and I think it's often not well managed (for example it's not necessarily about anxiety but often gets bundled in with it and confuses people who aren't actually feeling that anxious). And like you say, it's often from applying breathing patterns from asthma when you don't need to.
You've made it clear this is just your experience so this isn't aimed at you or a criticism. But I do just want to say for anyone reading that you can also be having asthma with normal O2 saturations and no wheeze - and the misconceptions can work that way as well ie you could have atypical asthma being called dysfunctional breathing.
It's also common to have lower than normal carbon dioxide (CO2) during an attack as you are breathing faster; having normal CO2 during a bad attack is not a good sign. However, as Phoenix1992 says you don't want to be having low CO2 all the time!
With all this said though, perryg1 I'm sorry you're having such a rubbish time at the moment, it sounds horrible! It does sound like the asthma physio should be able to help -as Phoenix1992 says, you may well benefit from this as you may have picked up some bad breathing habits.
Asthma is variable so it does seem relatively unusual to be much the same all the time. But it is tricky to work out the overlap between atypical asthma and dysfunctional breathing given that chest CT, X-ray and O2 saturations can all be normal with asthma. With lung function, have you had reversibility testing (withhold your medication, do the test, take some Ventolin and do it again). Does your reliever help at all when you take it? Oral steroids not helping may be a sign it isn't asthma but equally, they don't help me for stuff I know is asthma so that isn't a valid test. I have an idea they used to help me but I'm not sure as I have a type of asthma that is less likely to be helped by them anyway. Asthma can change over time.
Hopefully seeing the physio can help to clear away any elements of dysfunctional breathing, which should help you not only feel better but also see what's left once that isn't there. I've had physio for this in the past and it did make it easier for me to learn what was what. You may find this older post helpful - not saying you have anxiety but it can help you to think about what may be asthma and what isn't. healthunlocked.com/asthmauk...
You could also call the helpline on: Call us on 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm
Really hope this helps and you start to feel better soon!
Thanks for clarifying those points Lysistrata. I would hate to confuse people.
I wanted to share my experience on this forum as I was seeing consultants every decade from my mid 20s until my late 50s, when the correct additional diagnosis was finally added. I would hate for others to waste years not knowing and being limited physically like I was for over 30 years, if some of the out of control asthma is caused by their breathing pattern.
And it's really helpful to hear your perspective! Very much something that's helpful to share and shocking it took so long for you (it seems like it more often gets misdiagnosed the other way with this particular issue ie atypical asthma not being picked up, but neither is good). Thanks for sharing.
Thank you so much for your long and kind reply It is so frustrating that there are so many different presentations and symptoms of asthma and a lot of people assume when your O2 is fine and lungs sound clear that it's not asthma or you're fine but you're right there are different presentations.
No I haven't had a reversibility test but I will ask to have one! I don't typically find my reliever inhaler much help either though, my asthma has definitely changed over time and has become much more severe and doesn't seem to respond to medication like it used to
And thank you for that link! It was very useful
I don't think I have ever had my Co2 levels checked- do you have an at home device to check this? They didn't check this when I went to a&e or the spirometer tests- I will ask for it next time thank you
Thank you so much for your reply! this was really reassuring and I'm so glad you've found something that works for you I'm keeping every single one of my fingers crossed it helps me too! How long would you say it took you to feel better? And are there any exercises you found particularly helpful?
When you feel bad with asthma can you tell when the change from asthma to breathing pattern disorder starts? And what were your symptoms?
Sorry for all the questions! Feeling so low at the moment as a result of my asthma so this is some hope for me
Hi perryg1, sorry it's taken me a few days to reply. I was taught only one breathing exercise and practiced lying down first, twice a day for however many minutes I could, building up to 10 minutes twice a day. I was also asked to check in with my breathing when I remembered to throughout the day and when I am walking. (I love walking!)
There was no pressure to how much I could do right away. My consultant also asked me to try this new way of breathing before using my inhaler, if I was having symptoms.
I quickly learned when my asthma symptoms were more severe and sudden as I was too out of breath to even try it. And usually I knew it was one of my triggers anyway.
When my asthma is starting more slowly, I cannot (yet) tell the difference. I only know because I cannot correct my breathing pattern.
Three things trigger my breathing pattern to become dysfunctional. Asthma, anxiety and the ingrained habit of doing it for over 30 years. And I don't have an audible wheeze with my asthma. For the slower starting asthma, I correct my breathing pattern for 2 lots of 10 mins and if it is not asthma, the congestion in my lungs loosen and I can cough and clear it. The consultant did not know why I get congested in this way and admitted there is a lot they don't know about what goes on in the lungs. I continue to correct my breathing after every puff of my inhaler for 10 mins each time until my asthma is sorted. If I am having an asthma attack, I can tell the difference & I am more focussed on using my inhaler.
I started the breathing exercises in February 2020 and that summer, my worst time of year, I didn't need steroid tablets or to use my home nebuliser. And outside of the summer, I was able to go walking without exercise induced asthma, unless I was walking for much further than an hour, then I do. The following year, I reduced and came off the uniphyllin tablets and the year after that, I reduced my Symbicort 400/12 strength dose of 6 puffs a day, to 200/6 mart regime.
This year is my first year of more symptoms, I needed prednisolone for a chest infection & I am currently needing help for my mental health, so contributing factors. I feel confident to get back on track though as I know what I need to do.
The improvement for me, in symptoms & quality of life, was within months. It took me a while to believe it was possible, but the evidence was in every part of my life.
I am still not perfectly controlled, but mostly controlled and I'm not on so many medications with little or no control. I know the improvement was quick for me too, as I knew I was overmedicated and there was something going on they didn't yet understand. I had clear CT scan, bronchoscopy etc. in the 10 years leading up to this.
The book my respiratory physio suggested I buy, was published in the 1990s in New Zealand, I don't understand why this was not global knowledge amongst the Respiratory medical field from back then.
Hi, I couldn't read this and not reply as I have had a very similar experience to you. My asthma also got bad about 6 months ago and I'm still in the process of getting it sorted. I have spent most of this time telling health care professionals that it feels like asthma and being told it probably isn't asthma driven but a breathing pattern disorder and/or vocal cord problems. I have learnt that you don't need to be wheezing or have low oxygen to be having symptoms or even quite a severe exacerbation. You are very young so you will probably be compensating quite well hence the fine oxygen.
I am also on Fostair 200 & Spiriva. I tried Montelukast but it didn't make any difference so I stopped taking it. Oral prednisolone doesn't work for me either (10 high dose courses in 6 months).
I have spent months in and out of hospital. Lucky for me I do often wheeze during an exacerbation, and despite medication my Feno is always above 40. If it wasn't for this I'm not sure I would be beleived! Have you had a feno at all? It's no good for some people but for me it's the only thing I have to prove it's not everything but asthma driving my symptoms. I am very unresponsive to medication.
I have been referred to a teritary centre now and had an official breathing pattern assessment in which they have determined I don't have an altered brething pattern or vocal cord dysfunction. We are finally now back to addressing the atypical asthma.
Unfortunately being a young woman seems to be a disadvantage in asthma and you will be branded as anxious and have to fight for treatment throughout the process. Don't lose hope and be as persistent as you can. It only takes one health care professional to be on your side. You will get there.
I am so sorry you've been struggling too, it is truly so awful and no one can understand unless they go through it, I'm sorry it's been so long for you as well
You're right we are having a very similar experience (same medications too)! I am under a severe asthma care team so hopefully one of us gets some answers so we can share them. I would love to stay in contact if there is anything either of us have suggested that may help the other (obviously it may not but worth a try)?
When I last had my FeNo levels tested they were in the normal range so that is coming back clear too. It would be so useful to have a device that tests these things at home though, because a one of test may not represent the whole picture, especially when waiting months between appointments! I'm glad you have something that they can believe you with, but I'm sorry that nothing else is helping and breathing pattern and vocal cord dysfunction has not come up with anything either
You're right they do just assume it's anxiety! 2/3 times in hospital that's what they have said, but it makes no sense for my symptoms (ie only having 'anxiety' after a cold, and it not flaring up and down depending on if I am stressed or happy, but being 24/7 awful for months on end). It's frustrating not having any answers and people not believing you, it makes you feel even more alone in an already dark time.
Sending my thoughts to you, I really hope you improve soon and you get some kind of answer
Yes not having people believe you can make you feel like you are crazy! Just remember that you are not, it's the system that's crazy. I will definitely be in touch when I get anywhere and will let you know. Good luck with it all x
its always worth asking to see if acid reflux is a factor. I've had asthma since I was a baby and am now in my early 60's. I had a gastroscopy in my late 40's and was put on Pantaprozole which really helped. Recently Ive developed a very nasty cough with associated low peak flow. Was a bit worried - was put on prednisone but no impact at all. I didn't feel ir was my asthma but was certainly low energy and sounded breathless.... seems it may be Laryngospasm post virus/cold ..... have been advised to take Gaviscon Advance, Quadruple my Pataprozole and referred to speech therapy...!!! All down to acid reflux having its moment in the sun!
Thank you so much for your reply! I am on another asthma page and lots of people say the same that acid reflux mimics symptoms! May I ask what your symptoms were that caused you to look into this and have a gastroscopy? My symptoms are: feeling breathless and INTENSE pressure in my chest. My throat feels fine and clear but my lungs or lung area feels uncomfortable and feels wheezy even when I don't sound it.
Did you only get symptoms after eating or could you have symptoms 24/7?
I'm glad you have found some answers for yourself- sorry for all the questions!
it’s a bit complicated- many of the tablets and inhalers prescribed for asthma can aggravate acid reflux - I guess I was lucky in that I am normally very fit and active and NHS ventolin wasn’t as effective as I was hoping and the consultant was also an asthmatic and sent me to a gastroenterologist - apparently it’s very common!!! Unfortunately 70% of asthmatics are severely overweight and are not active so some breathlessness is actually not asthma but just being breathless due to being unfit… compilated as is I said . I XC ski 2-3 times a year and Nordic walk at z good speed (6/7km an hour uphil) so everyone knew I was doing everything I could to help myself and any support was worth the investment as I would take rehab and physio seriously. My symptoms were at night and after my evening meal mainly which I think was an indicator, reduce alcohol. Fizzy drinks and big meals
Thank you for your reply. I didn't realise asthma medication could aggravate acid reflux!
I agree it is all so complicated with asthma. I am very petite so luckily (or not?) my symptoms aren't due to being unfit, however since I have been pretty sofa bound for the past 5 months I'm sure will make things harder when I do recover. I feel out of breath/intense pressure regardless of if I am walking/sitting/talking, so it's definitely not exercise induced for me.
That makes sense that it was at night after food for you! That doesn't fit my pattern but I will still definitely ask my specialist if he could refer me just incase
Thank you for all the info! I hope you can get back to skiing etc soon and glad you have some answers
already booked for Norway for Christmas- it’s an incentive. Being petite myself doesn’t mean I’m fit! I work up to being able to walk for 30 mins at 6% gradient and 6.2 km an hour rate at the gym. I’ve got friends without asthma who get out of breath walking upstairs or uphill and it’s definitely because they aren’t fit…!
Ru using a spacer with yr inhalers? Also how often ru using salbutamol? Do be as active as you are able,to help yr lungs.u can get lots of advice on aluk website.controlled pursed lips breathing is gd to practise& use as it slowdown breathing and expands lungs
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I am only 24 and almost half this year I have been sofa bound in and out of a&e where they tell me I'm fine? It makes me never want to be around people with the fear of getting a cold if this is the repercussion. 
Help please. Anxiety, asthma or mix of both?
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Allergy Testing
Sudden onset poorly controlled asthma
