Excessive dynamic airway collapse

[SK8128]

I have severe asthma and mild bronchiectasis but have now been diagnosed with excessive dynamic airway collapse. If I do anything remotely energetic, my windpipe goes from 16mm breathing in to 5mm trying to breathe out - this then takes a long while to settle and is exhausting. I’m told this condition is rare and that there is no known cure. Does anyone else suffer from this condition and how do you cope with it?

[Chip_y2kuk]

Yes, me ... I got diagnosed two and a bit years ago after having issues and chest infections every few months for years... officially my diagnosis is EDAC and "probable asthma" (they can't decide if it is asthma or not but can't completely rule it out either)

I take tons of medication:

Hypertonic saline (makes mucus really thin and less sticky)

Fostair

Spiriva

Catbocistine (makes mucus like water)

Fexofenadine

Azythromycin 2 x 3 days a week (made a massive difference, helps fight back inflamation when used over long periods of time and being an antibiotic helps kick some bacteria too.)

I've also been seen by the respiratory physio and she told me how to clear mucus using breathing techniques and gave me an aerobika which helps too.

So there are things that can be done and options that are open now you have an EDAC diagnosis, but yes you are correct there is no cure (I suspect I've had it all my life)

The doctor told me " it's symptom management and providing we can keep you well you should live a long and happy life... the trick is going to be keeping you well"

[leo60 in reply to Chip_y2kuk]

Sorry you have this to deal with, but what an amazing, reassuring reply! xx

[SK8128 in reply to Chip_y2kuk]

Yes - I already take everything that you take except I don’t have hypertonic saline. I do have montelukast at night and I have a nebuliser with ipratropium and salbutamol for asthma attacks.

How do you cope with any exercise?

[Chip_y2kuk in reply to SK8128]

Do you also take spiriva? .. didn't think you could mix the ioptropium's (tiop and ipra)

I did take montelukast however didn't think it did anything and after many discussions stopped it about 2 years ago ... and didn't notice any difference

Hypertonic saline is designed to make the mucus slippy and not sticky and really thin ... its amazing when mixed with all the other stuff

They tell me the issue with EDAC and ASTHMA Is that the asthma makes mucus and the EDAC causes the airways to collapse pinning the mucus or pushing it deeper ... which isn't a good combination

I do ok with exercise, we take the kids swimming and do a few lengths, go walking (national trust members) with the kids.... its good fun and good to keep moving (even if its not as strenuous as I used to be able to do)

[SK8128 in reply to Chip_y2kuk]

Yes I take spiriva every morning but only use the ipratropium in the nebuliser when I have an asthma attack. It was prescribed by my consultant and used on me by another consultant before I had a bronchoscopy - I know all the blurb says not to use both but I find it works like magic in stopping an asthma attack and keeps me out of hospital. Over the last 6 months I have found that as soon as I do anything remotely energetic it triggers the collapse on every breath out which is exhausting. My windpipe goes from 16mm (in breath) to 5mm (out) and one of my main bronchus goes to 2mm. I keep trying to push through and doing things but it often feels like I have hit a brick wall.

Thank you so much for replying and for all the information- I’m just trying to get my head around it all at the moment. Having severe asthma and bronchiectasis, I could cope with but this is horrible.

[Chip_y2kuk in reply to SK8128]

Just wait till you do need to go to a hospital and tell them you have EDAC ... ive had a nurse practitioner ask me what it was and a doctor googling it... the young doctor bless him did listen to what I was telling him.. the nurse practitioner didn't want to know (which I've found with most of them)

Have you been recommend the saline? Are you also on carbocistine? ... these are the two main treatments for EDAC because they make it stupidly easy to move mucus... when I first started it was terrible everytime I would cough and clear mucus and sometimes quite harshly ... nowadays it's every now and then or when I'm not well (but it doesn't last long)

I take 6% saline through a nebuliser twice a day ... its really really salty ...and the consultant said "it will draw moisture out of every orifice in your airways but it also works directly on the mucus making it less sticky and thinner" .... i figure as I used to get chest infections every 8-12 weeks having less for it to breed in can't be a bad thing.

And the doctor who prescribed the carbocistine said "it can make some people feel like there drowning... if you can't tolerate it just stop it won't do you any harm"... luckily it didn't make me feel like I was drowning.

Replying and all the information isn't a problem.. we are all here for the same reason, to learn and understand ... I find from experience is best.... and sadly doctors can't know everything... and EDAC is stupidly rare and little is known about it (apart from it exists, often gets diagnosed with other respiratory conditions and causes breathlessness and mucus retention; which results in chest infections frequently)

Can I ask a personal question? ... are you overweight? ... the reason I ask and ive never had anyone to ask this before . I read loads of studies on EDAC/TBM and one of them focused on weight and it was discovered that people with this condition tend to be overweight ( I am) but being overweight didn't cause EDAC/TBM as there are people who are massively overweight tho don't have it.

[swallow in reply to Chip_y2kuk]

Good post.

[SK8128]

haha yes I am overweight. The carbocisteine makes a big difference to me. The consultant said 2 tabs 3x a day but my GP reduced it to 4tabs - not enough. Last time I phoned for an appointment it was a 5week wait! Luckily I have spare so I’m taking an extra 1 at lunchtime and that’s ok. I’ve just sent for some saline on Amazon so hopefully that will help. I have seen a lung physio and a speech therapist who gave me opposing information about coughing and mucus control so I stopped going. I now have to see the speech therapist again as the consultant has suggested that my voice box might be hyper sensitive- if I laugh I end up having a coughing fit 🤣.

Have you heard of Lane Fox research centre in London? My consultant has sent my results from all of my recent tests to them to see if they have any suggestions.

[Chip_y2kuk in reply to SK8128]

The coughing from laughing will be EDAC (at least that's what I've been told) ... makes sense really as your large airways collapse when you breathe out anything that causes them to close hard will cause them to rub ... and cause a cough.

Be careful with the saline, it can cause tour fev1 to drop drastically.. they made me do my first one under "test conditions" in the hospital spirometry before,inhale the saline and then do spirometry again.

I haven't heard of lane fox in London I'm actually under Liverpool and the head honcho of respiratory Hassan Burhan has an "interest" in this condition... he actually told me what it was before he confirmed it with the tests

[risabel59]

Hello, I have EDAC, I also have " difficult" asthma, The asthma was proved some years ago through a metacholine challange test. I think more people are now being diagnosed with this, as it can now be diagnosed with a Dynamic CT scan rather than Bronchoscopy. I am very fit, but if I get an asthma flare up or a virus, I can't move mucus and get sick. I was taking Azithromycin 3 times a week, but I am having a break at the moment. I also take a pile of asthma medication everyday. I have had a lot of Respiratory physio which has been very helpful. I was also prescribed a PEP device, and do active cycle breathing, this is quite hard to get the hang of, but I had a lot of help from the physio's. Apparently lots of people give up on this, but it really does help. And does help get rid of the gunk if you get it right. I also have an Aerobika, but that doesn't help much at all. Nebulised saline is another treatment to dilute the gunk and get it moving.

Unusually for someone with severe EDAC, (I think mine closes something like 95% on forced expiration) I can control it a bit, unless I am sick or in zone 4 when training. When exercising pursed lip breathing really really helps, and keeps your airway open on the out breath and stops that breathless feeling. (tons of videos on youtube about this) Your consultant needs to refer you to a specialist respiratory physio, and ideally they will come up with solutions to help you manage. The only thing I will say is, The breathing exercises arn't easy, and you just keep with them, as they do make a difference. Exercise is still important, don't give up on it. I have also taken up Clarinet, as I was so depressed when I got my diagnosis last summer. That has also really helped my breath control. (although my consultant was a bit suspicious when I told him, he was more worried that I was going to get an infection from it. I am really careful about cleaning it.)

Also do believe everything you read on the internet about this. It is still a relatively rare condition and that is because it was so difficult to diagnose. Now that it easy to diagnose more people will be diagnosed with it.

Do try and find a specialist who understands this and try and get referred. They are pretty few and far between at present.

If you have any other questions please feel free to PM me.

R

PS, I don't fit the mould for this, as I am not remotely overweight, despite that being an indication. Also my respiratory consultant, (he mostly see's young athletic types) Says he is seeing more very fit people being diagnosed. I am in my sixtes, but have had asthma all my life, but have always been very fit. There is a suggestion out there that it might be caused by steroid usage... I have been using inhaled steroids for 50+years. So I now have to go through a whole protocol of FeNo and Blood tests before I can use oral steroids. Needless to say because of delays on the NHS this doesnt always happen and I have use my own judgement.

[Patk1]

I have it + also TBM both greater than90% collapse,affects in & out breaths.im on bipap.lung physio said the aerobika also helps to open airways

[Timberman]

Sometimes I read all this and think we must be on different planets. Someone will describe breathless symptoms which seem like mine and then say they go swimming with the kids! I cannot cross the room without collapsing! They will talk gaily about how their mucus runs like water. I cannot turn mine off yet I am constantly full of thick mucus despite all the drugs and cannot cough it up! Then I check their meds and find we are on the same stuff!

With others they will imply constant checking of their oxygen sats and bemoan how often they fall to 90! Look, I have trouble getting them back UP to 88!

I am sat here now on a bright, spring day doing no more than typing. I am breathless and my sats are 88... I walked her via the loo and it took ten minutes for my breathing to stabilise!

Does this not sum up the most difficult aspect of COPD - everybody suffers its effects in wildly differing ways.

[janedivney]

Hello! It’s a nightmare isn’t it? I don’t understand how people with significant EDAC can take much exercise because the main feature of it is that airways collapse on any exertion. So that’s a puzzle to me. I suppose there are differing degrees of EDAC.

I’m very similar to you. I have severe asthma, severe bronchiectasis, and now severe EDAC! Also aspergillosis. I get extremely breathless if I try to exercise, but I keep at it & just go very slowly. It’s very depressing though.

One thing which has made a HUGE difference and which I highly recommend is a CPAP machine. I go to the Brompton & they’ve found that CPAP can help EDAC, even if you don’t have sleep apnoea. Since I got my machine, I’ve found the benefit of it extends into the day. It was hard to get used to it, but I was desperate! Before I got my machine, even walking across my sitting room made me breathless, but now I can go upstairs slowly without stopping, and even walk a few minutes on my treadmill. And of course exercise is so essential for us. So if I were you I’d ask about CPAP.