is anyone's asthma (while on all the usual meds) presents as tightness in the chest? No wheeze no cough? Spirometry normal and mannitol test negative? Peak flow doesn't drop much when symptomatic unless severe like with chest infection?
I'm just fed up with the severe asthma clinic I'm under : they are trying to confirm my diagnosis but so far everything has shown as normal. I know it's asthma and it's horrendous between January and August due to pollen as well as with chest infections. But I can't convince them thar it is. They can't give me biologics unless the diagnosis is confirmed. I feel like I'm waisting my time and swallowing all the damaging steroids and antibiotics every time I have a flare up! I'm so fed up!!
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sciencepotato
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No. I have literally spoken twice with the consultant within 13 months of severe asthma clinic. She doesn't care. And now she's gone on mat leave, leaving me in limbo.
So I have had a negative mannitol and a negative methacoline
My lung function is normal apart from my spirometry showed a drop towards the end, like a giant U ... everyone told me my spirometry was "normal" ... but when I finally got to the right place the guy said that's not normal but it's always been in your spirometry "so we don't think it's a flawed technique, I think it's the airways collapsing and then the air being forced out"
But he suspected I had large airway collapse which was confirmed with a dynamic CT (I also had a dynamic xray for good measure)
The tell tale for large airways collapse is "unexplained breathing problems" and "regular recurring chest infections" it also tends to come along with something else asthma/COPD being the two obvious ones ... but they don't play nice together.
Just when I started to think I was going mad and my breathing problems where imagined (which I had been told was the case more than once) I found out the above.
My official diagnosis now is Excessive Dynamic Airway Collapse and Asthma.
It's not good that your doctor has gone on mat leave can you not see someone else in the team? ... they are normally more than one person from experience, so someone going off would leave the others in the team her workload.
Really sorry to hear that. Did you cough when symptomatic?
How do you manage now on day to day basis?
I'm really frustrated with how things are going in that clinic. Yes there should be some registrar taking over cases but I don't hold my breath as it's just going to be another waste of time, explaining to him that it's asthma as prednisolone fixes everything all the time.
Yes, the main issue with EDAC is that "stuff" can get in but when you cough/breathe put/sneeze my larger airways quite literally fold shut and trap/pin/squish whatever in place or push it further down into the smaller airways so yes my main symptom was and still is the mother of all coughs
I'm on a fair whack of stuff now and have tools and techniques to keep me going so most of the time now i do well ... the problem I have now is if I can't see my GP I also have to explain to whoever I am seeing what EDAC is.
Sounds awful to be honest. What do you think made the doctor suspect that?
The problem is that I don't cough. I think that might be a major part of the issue. Stuff gets stuck there and that's it. Chest infection. So I need someone experienced and who knows what they are talking about to diagnose me. And I have no doubt it's just asthma to be honest.
My spirometry and the constant chest infections .... apparently with the airways collapsing it's really really common to get chest infections every few months at best ... I could set a calendar by when I was "next due an infection"
I guess it also helped that the guy I saw was the Head of respiratory and also has an interest in airways collapse as well as respiratory and addiction (he's written papers on it).
The thing with airway collapse is its really rare and little is known about it... so it is commonly missed/overlooked and its also present with other issues so I get how it's taken them 36-37 years to find it... but I've been on the war path looking for answers for the last 8 years and been told all kinds from it's in my imagination to cardiac asthma.
One of my asthma symptoms can sometimes show itself as a tight chest but no wheeze or lung crackles .
Oxygen levels can be fine , but my breathing is restricted …very unpleasant and anxiety making .
Have you had any allergy tests ….my three asthmatic daughters are allergic to different things ….some pollens , animals , dust etc .
Birch pollen sets me off …and I used to have a silver birch outside my bedroom window !
I have two air purifiers , but today put my glasses on and saw the dust on my windowsill …horrified .
Also has your breathing pattern been monitored ….number of breaths per minute , where you breathe from ….upper or lower chest , belly breathing …out on an in breath , in on an out breath ….tight shoulders , relaxed diaphragm ? Gentle , gentle relaxed nose breathing to warm and filter the air
Air trapping ? nose breathing only ? Hyperventilating?
I find pursed lip breathing useful …breathe in very gently through your nose …not a big breath but gentle …..then gentle breathe out through pursed lips . Repeat a few times .
I have just started watching Janet Brindley on you tube …very calming breathing ideas.
Yes to all of these above. I don't find breathing techniques helpful though. Had a year of resp physiotherapy but there's only as much they can do when I have inflammation that's poorly controlled.
So if it's not asthma then I don't know what it is.
It's a pain that we we have to chase consultants. It sounds as if you need to give yourself a break until your energy levels recover. Be kind to yourself, as much as possible. The answers you've received on tis forum look interesting. I hope you will eventually feel able to follow them up. 🤞🤞🤞xxx
My energy levels will be back once I find a knowledgable consultant 😅
I'm convinced that I have allergic asthma and need to try biologics but for that I need to "prove" I have asthma.
Like I say above I don't cough hence dynamic airway collapse cannot be it. I don't have bronchiectasis either as ct shows. My heart is okay too. I don't have ILO either. So that doesn't leave me with much else!
Hi just read your post from a few months ago. I hear you and feel your frustrations. My symptom is also that of a tight chest I also think it’s related to Asthma. All readings are clear for inflammation. It’s a little worrying that if this is the case we’re not going to be considered for biological therapy. Although not sure what else they can give me as Predinose doesn’t seem to help. Are you any further forward with your situation?
hi! I'm under severe asthma clinic, just changed the doc and having some tests to investigate. I'm having frequent chest infections now, so they will have to do something as getting antibiotics every few weeks isn't good. My peak flow drops if I don't treat with antibiotics and / or steroids. Steroids do help like a charm.
I was also given a peak flow chart for a few weeks, my highest pf was 560 and lowest 420 before I started steroids, so hopefully the 25% variation in peak flow over time finally convinces them I have asthma.
After over a year in severe asthma clinic, change of consultants, tons of tests, I'm finally going to trial tezspire in the hope to end countless and endless exacerbations of my asthma and chest infections.
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