Asthma slow onset and atypical - getting help

[BlueBlobs1]

Hi, I have the sort of asthma that doesn't fit the norm in that I don't weeze. I get breathless from doing things like walking but when I sit down it tends to go away after awhile.

Last month I had a hell of an experience trying to get help for my worsening asthma symptoms.

Part of the problem is covid because my surgery won't diagnose asthma without spirorementry which I don't understand because I still meet diagnostic criteria bases on peak flow and response to meds.

So with no diagnosis and atypical asthma it is perfect grounds for "doesn't sound like asthma to me" and the insistance on ruling out other things. Which I understand but not at the expense of treating my asthma.

After speaking to 5 GPs and being referred to A&E and then finally to Ambultory, I lost the plot and argued until they gave me Prednisone.

Surprise surprise, I got better and my PF got back to my top. As soon as I stopped, my peak flow dropped and has been up and down since.

I nievely thought that the proof is in the pudding and I wouldn't get so much push back now. Nope.

Things have been getting worse, my peak flow is creeping downwards and my breathlessness is getting worse. I can do very little without getting breathless which is what happened before.

The problem is that the advice is generally geared towards acute attacks rather then the type that creeps up on you.

What worries me the most is my oxygen is also dropping after activity whilst I am breathless ( confirmed with two different monitors ).

I had low oxygen and breathlessness walking into A&E which deminished at rest. My pulse was 120 and oxygen was 96 when they discharged me. They excused it as the inhaler. When I saw a doctor the next day my pulse was 166 and I had barely taken it. He said I either had a cardiac issue or was having a very seriously asthma attack.

Nothing cardiac came back and the Prednisone clearly worked.

I am scarred because things are taking a similar course and I don't know what to do.

My doctor is going down the cardiac route again with a holter monitor which is fine by me but not by ignoring my asthma.

Whereas yesterday my wife had an asthma attack and was given steroids.

I am really frustrated and exhausted.

When the asthma is slow and progressive like this, how is this usually managed? They don't worry about asthma that's like that, but from what I have read, this sort of asthma is also serious because you could get respitory failure.

Any advice? Thanks

[Lysistrata Administrator Community Ambassador]

HI Blueblobs and welcome!

Sorry to hear you're struggling. I and others call this 'limbo' and it is really hard! Unfortunately I think you're right that they're often more geared towards acute attacks and don't really know how to handle 'limbo'. I used to get drs saying 'oh but you've never been admitted so it's fine'. When I was admitted would get told in clinic a few weeks later 'oh well you didn't really need it, you don't have asthma that badly'. There's definitely a tendency with some (not all!) medics to use the information that suits their existing view and discard what doesn't fit, and being atypical is never fun.

I also don't wheeze and tend to get a high heart rate when my breathing is worse, which is often blamed on the salbutamol (as you've also found), but tends to come down when the asthma is treated. This is actually in asthma guidelines (high heart rate as a sign of worse asthma) but is often overlooked. It's obviously good to have your heart checked to make sure it isn't that, but since you have and it doesn't seem to be the issue it is frustrating that they keep going down that path and don't look at the asthma.

Maybe you can do the holter just to show you've done it? When I did mine (x2, for similar reasons), I got a diary to fill out. Perhaps you could note any times you feel especially breathless on it, and any triggers? I did this but my handwriting is so bad and they don't give much space lol so I think it was ignored. As a woman in my 30s now, 20s then, I think they preferred to blame things on anxiety though appreciated they needed to check out the cardiac side - but when I was referred to cardiology by respiratory they immediately started in with anxiety. I understand there can be some overlap in symptoms, but I wasn't anxious. I don't really get anxious even as a result of breathing issues, but may when I'm not being listened to when trying to get treatment.

It does sound like you're responding to asthma medications symptom-wise and with peak flow, so they ought to take account of that - as you say, you meet some of the key diagnostic criteria without spirometry. Even if you were able to do spirometry, asthma is variable, so it wouldn't necessarily show anything if you were having a good day, or even if you were less good but your best is higher than predicted. Of you used to play sports/sing/play a wind or brass instrument as a child, it can often be higher than predicted and then you look 'ok' when your lung function is actually reduced).

Obviously if your reliever isn't working and you're too breathless to speak, eat or sleep you should get help asap, but it seems like you know that. In terms of the slow creep but less acute, it is harder, but shouldn't be ignored - I know easier said than done!

I would strongly suggest giving the AUK helpline nurses a call; they have time to listen and are usually very helpful, plus can usually advise on how to approach your GP. They're open Mon-Fri 9-5 on 0300 2225800 or WhatsApp - 07378 606728.

I'm sorry I can't be more helpful -I wish I had the answers! But I guess at least you know you're not alone, which I can find comforting, especially after being told repeatedly that I'm fine. And yes, while of course you don't grudge others like your wife their treatment, it can feel really rubbish to watch more typical people get treatment while you're dismissed.

[BlueBlobs1 in reply to Lysistrata]

Thank you Lysistrata. Limbo is a good way to describe it. I fell between cracks between A&E and GPs, A&E thought the GPs should be treating me and the GPs thought A&E should be treating me, meaning that no one was treating me. One GP said "I don't want to scare you but Asthma kills people and you need to go to A&E" "I know that but I have literally just been!". My poor wife has been having asthma attacks that we thought were anxiety attacks. It is very good that she is finally being treated.

[Lysistrata Administrator Community Ambassador in reply to BlueBlobs1]

Your poor wife, glad she got a diagnosis finally! I saw below they were trying the anxiety angle on you too. Like you I don't get anxiety as such but stress from being misunderstood and not listened to, yes! It's very frustrating. For some people stress is actually an asthma trigger, but that doesn't mean the resulting asthma doesn't need treatment, and it's not universal (my breathing actually improves with stress weirdly).

And between the cracks yep - can be a certain amount of buck-passing.

[BlueBlobs1 in reply to Lysistrata]

It gets worse, A&E even told me I was taking my rescue inhaler too much. The out of hours GP was horrified and made me take it whilst I was on the phone! And yes it's the stress of not being listened too. I suppose if stress releases cortisole and adrenaline stress helping could make a lot of sense.

[Lysistrata Administrator Community Ambassador in reply to BlueBlobs1]

Ugh have been told that too!! One time it was 'you took too much salbutamol and it made your HR go up which is why you're breathless, it isn't asthma'. Wouldn't let me have nebs but gave me magnesium "to lower your heart rate'. That always works nicely for my asthma so that Dr probably still thinks her theory is correct...my breathing did improve and therefore so did my HR.

The stress thing is a mystery to me as I don't produce enough cortisol in response to stress any longer (adrenal insufficiency from years of steroids, which it turns out I don't respond to well anyway). I had assumed it was something like that but now wonder, because I know my adrenals are lazy and aren't cranking it out as they should! (When my asthma is bad I have to take extra steroids on top of my usual replacement dose for the AI - asthma gobbles up what I can make).

[Carriejen]

I cant really offer any advice but I was diagnosed for similar reasons to you. I went to the gp because my breathlessness wasn't improving even though I was exercising more (i was a 40 minute to uni and back each day and my 'fitness' was getting worse as it got colder) but when I sat for a while eventually my breathlessness improved, unmedicated (its taken me a while to accept i am asthmatic because of this). I was diagnosed based on peak flow and response to salbutamol, I've never had any spirometry. And I've ben told I have difficult to manage asthma (I'm currently taking fostair, spireva, montelukast, dymista and was taking fexofenadine for most of lockdown). My gp are proving really difficult to get help with because of the current covid situation. Perhaps like Lysistrata has mentioned you could go for the cardiac testing theyre deeming necessary to rule out anything on that side? I really hope things get sorted for you soon

[BlueBlobs1 in reply to Carriejen]

Thank you, it's good to hear from someone with the same issue. It's always been a response to excise for me. But during a flare "exercise" becomes walking up the stairs or even just going to the toilet. Which is exhausting. I have heard a lot of people being diagnosed without spirometry, it feels like covid is being used as an excuse in some cases. An x-ray department said they haven't got any patients because no one isn't getting referred. Mean while patients are told they can't get referred because of covid! Definitely think it worth having the Holger, I don't expect it reveal anything but at the least it will help put the cardiac angle to rest and of cause I can't rule out cardiac involvement, just seems unlikely at this point.

[Carriejen in reply to BlueBlobs1]

I dont understand why they are pushing for other issues when you improve with inhalers. That was the fix for me, inhalers made it better. My peak flow shot up when I went started on fostair and its now better than the average for my weight and height. Although now that cardiac issues are mentioned ive had a fair few ECG's since I was diagnosed 3 years ago

[alexanderosman in reply to BlueBlobs1]

I'm literally struggling with exactly the same thing right now. Just came on here to post about it. I also get very breathless and tight with any "exercise" (which also includes talking at the moment) but am better after sitting. Went to A&E on Friday because I was breathless when sitting as well and they obviously thought I was making a fuss about nothing. I'm now in that limbo stage where I feel ok if I stay still but get very breathless if I do anything (even playing the piano or standing in the shower). Ventolin doesn't make much difference but if I see a doctor they'll tell me my oxygen is fine and chest is clear and send me away. My GP does give me pred when I describe worsening symptoms luckily so I guess I just have to wait and see if that helps but I generally respond more slowly than doctors would expect considering the apparent (to them) severity of my symptoms. So I do sympathise. I wish I could offer more help but I don't know what else to do myself.

[BlueBlobs1 in reply to alexanderosman]

Sorry to hear your in the same boat, it's scary and frustrating. It does sound just the same as me. I am not so bad today, which is good because my wife is too breathless to shower. Quite a pair right now. When I am bad I can be breathless though very minor things and it's quite debilitating. Do you finds its accumulative? The more you do the worse it gets? Like your body is tiring of compensating?

[alexanderosman in reply to BlueBlobs1]

Yes, it comes on gradually and only subsides if I do nothing at all. I think I gradually build up a level of inflammation, so I feel as if the ventolin is keeping the top of my chest open, but not relieving the tightness lower down which is what’s causing the breathlessness.

[BlueBlobs1 in reply to alexanderosman]

Exactly, just how I feel. I think a lot of the inflammation I get is in the small airways which would make sense to me as dust mite can get very low in the lungs and cause inflammation and I believe I am allergic. And that's where the gas exchange happens. The rescue opens up the big airways which isn't where my problem is.

I get other signs of inflammation at the same time like my nose feels inflammed. I get mucus deep down too. I also notice my peak flow graphs match the weather pressure graphs!

What maintenance inhaler are you on? I am on Symbicort, I read fostair is smaller and gets deep down better so might work better. Asthma UK told me to take rescue first which probably helps it get in a bit more.

I am also thinking the SMART regime might be appropriate.

[alexanderosman in reply to BlueBlobs1]

I’m only on Clenil atm because I’ve had a few years of being well controlled except when I had a cold or infection. Considering that I almost always need pred when that happens, I don’t think it’s been enough.

[happyvaccine]

Hi there

I suffer with breathlessness without a wheeze too however peakflow better after fostair.As a teenager I had wheezy asthma and given salbutamol that helped.

Recently in my 40s I no longer wheeze confusing the doctors.

Sorry to hear your experience.. you must have felt really bad to have had to attend A/E.

Were you wheezy at A/E for them to give you prednisone or did they give it to you because you asked for it.Did they nebulise you too with salbutamol?

I attended A/E few months ago feeling sob+++ and heart rate 130 .. no wheeze

Then sitting in A/e for a few hours my sats 96 and heart rate coming down but still up at 116 .. still felt breathlessness but as no wheeze they discharged me and asked my GP to refer me for a holter .. came back sinus tachycardia average hear rate 100 and said probably due to anxiety!!

My hear rate normally is around 70bmp and no history of anxiety!

Since taking fostair after this incident which luckily my GP eventually agreed to prescribe for me I feel better .

My worry is that people are presenting to A/e but not recognised as asthma as not wheezy therefore not treated appropriately.. so was this your situation too.

Thanks for sharing

[BlueBlobs1 in reply to happyvaccine]

That sounds similar to me, this seems like a common problem and it is certainly concerning. The fact that medical professionals don't understand a very basic component of human physiology, that the heart increases in rate when more oxygen is required boggles my mind. It is after all why our heart rate increases due to exercise. Ironically it's the situation with the doctors that makes me feel stressed. I find it curious that they keep using the word anxiety and never mention stress. I suppose its because stress is more an external thing and they consider anxiety an internal thing. It's like they are keen to make it out fault. I don't really get anxious, but it is making me feel angry. For myself and every one else in the same boat. Sorry to hear you had that experience as well. Just read the fostair is extra fine, gets deeper into the lungs. That sounds like what I need. Thanks

[happyvaccine in reply to BlueBlobs1]

Yes Hopefully fostair will help.. If not ..there are other options GP / asthma nurse can prescribe once they believe its asthma they are dealing with .. best of luck

[NorthernKitten in reply to happyvaccine]

Push for help. Please. Point out that things improve with meds... and get worse without... and that the pattern is downwards. If you have a Peak Flow meter, track it. And crucially, track it before and 15 mins after salbutamol - as reversibility is the key thing here.

If you know your best peak flow, then talk to medicals in terms of percentages. My "red" zone is actually only 10l lower than the predicted best for my age / height etc, which used to cause many problems until I colour coded my peak flow meter, and started saying "I'm at 60% of best, increasing to 75% with salbutamol and dipping back after [x] minutes." This gives them a more objective measure for YOUR context. (I was a chorister and dancer for years, and then have played flute ever since, so I can *do* lung capacity!).

I ignored these symptoms over the last three weeks- put it down to "normal" asthma. Have just got home from a 3 day hospital admission because they crept up until I couldn't cope anymore. Thankfully my care was superb, from ambulance to discharge - I'm really sorry yours wasn't.

The asthma team in the hospital were surprised I'd never had spirometry either, but pointed out that if symptoms improve with asthma meds, then asthma is what we're looking at (at one point, the consultant was thinking blood clots because my heart rate was through the roof - and wouldn't come down much even after ventolin etc wore off. Took three days to get it to upper end of 'normal.') Your heart works harder when you can't breathe.

[Lysistrata Administrator Community Ambassador in reply to NorthernKitten]

Completely agree re pushing and noting reversibility, and on it being about your own context not the average.

I'm similar with peak flow - played the oboe for years, my best is well above predicted so I get difficulty with that. It doesn't help that I also don't drop neatly. I can have a severe attack (including dodgy blood gases) and still be over 50% of my best which is practically green for my predicted. The couple of times I have dropped below 50% yes I have needed hospital but they definitely weren't that bad in comparison.

For me it's more about the response: as I get worse it starts to wear off more quickly even though I get a good response initially, then stops really responding at all.

I have recently discovered that my consultant, who supposedly is an asthma expert, doesn't believe any of this is possible and has said no one needs admission with the peak flows I get. The time he came to see me (thankfully he doesn't often), he was happy for me to go home at 55% of my best (he said the discharge guidelines which want you to get to 75% didn't matter). He told me that I was doing my peak flow wrong (but I got identical results with his way, and have since been told my technique is fine). He also said my high HR at that point was due to nebs. I pointed out I hadn't had any since the previous evening and it had been in the 70s all night as I was better, and only got high again when I got up to use the bathroom; that amount of movement was still difficult at that point.

Glad that you had a better experience though sorry to hear about the admission! Hope you're recovering ok as it's so exhausting even if you're treated well.

I've definitely also had the whole blood clot thing - one time left on oxygen but not nebs for a few hours because of high HR, reduced oxygen on blood gases but no wheeze so 'not asthma'. Thankfully the initial pulmonary embolism test was negative so then they did treat the asthma (they don't always, sometimes just say well not PE go home).

[BlueBlobs1 in reply to Lysistrata]

Not sure what the point of guidelines are when they do there own thing anyway. That's shocking. As you say exhausting even when you have a good experience, when you have a bad one and have to fight for your treatment.

[NorthernKitten in reply to Lysistrata]

You sound exactly like me! Thankfully the asthma nurses were phenomenal, and even the consultant was great. Even not having had nebs for 24 hours, and with peak flows broadly stable at 75% he was happy to keep me in to rest.

Have come home and not been well at all, but managing.

It’s such a shame that quality of care varies so much. 😢

[Lysistrata Administrator Community Ambassador in reply to NorthernKitten]

Wow I want your hospital lol! Mine practically writes the discharge summary as soon as you get onto the ward, regardless of what happens. The allied respiratory team try to keep people until they are ok without nebs, but one said the medics don't really listen to them and I have noticed that too (not drs so can't know apparently 🙄).

I had a much better experience when I landed up admitted while visiting a friend - they actually managed to listen to me and felt my views were sensible. It did reassure me that I wasn't crazy and demanding for wanting to get to a better place before going, which my usual place always makes me feel (they ask how I feel about going home and if the answer isn't what they want to hear they'll go on at me till I give in. I don't know why they bother asking when they've made up their minds).

Sorry to hear you're still struggling. I definitely am shattered afterwards even when lungs are ok. Even the best hospital also is not sleep friendly!

[twinkly29 in reply to Lysistrata]

So much your last paragraph! Actually all of what you said, but even many admissions in, it surprises me how exhausted I am and how much the recovery needs to continue after discharge. The "better" the admission the smoother the recovery as well.

My previous hospital used to be irritating with discharge. "Possible discharge" from cons meant hmmm we will see. Nurses took that to mean definite, would get things "in progress so we're ready in case".....then be all arsey when it didn't happen and be all "well why aren't you going?!" as if I'd begged to stay......even saying cons said no not ready they'd be trying to get me out!

[BlueBlobs1 in reply to NorthernKitten]

Thanks. When you say reversibility being key, do you mean for diagnosis or management? My PF seems to be at what ever the max is that week, like it's capped. So if that week so am getting a lot of 450's and it drops, the inhaler will get back to 450. 370 will become 450 after the rescue. But if my max that week is 400 and it drops to 370 then I will only get back up to 350. And then if it's 370 that week and I take it, I will get no improvement. Etc. I assume this is because the rescue is for bronco spasm and the maintenance inhaler is for inflammation. With that in mind, it seems that inflammation is my main issue, spasm less so. Prednisone got me back up to my best but went down after running out. sorry to heat you had to be hospitalised, but good to hear that you were treated well.

[NorthernKitten in reply to BlueBlobs1]

By reversibility, I mean “can you get back up with rescue meds” - not necessarily the whole way, but a clear change after a blue inhaler for eg.

So it’s a bit of both - if you dip, can you get up to (or near to) where you were recently / your am/pm normal with just maintenance drugs .

If the “where you were recently” line is dropping steadily over a few days / weeks, that’s a sign that you’re less well managed. You may find more rescue doses are needed: and if you’re hitting the blue more regularly, you need to have an asthma check.

Some variability is normal day to day and hour to hour, but the overall baseline should be broadly similar, and the “dips” over a day not too frequent nor deep. If the blue lifts them back up, then you’re more than likely looking at asthma.

Does that make sense?

[BlueBlobs1 in reply to NorthernKitten]

Loads, thank you that helps

[happyvaccine in reply to BlueBlobs1]

Hi just wanting to know please .. has anyone ever had change of their asthma presentation over the years ? Did you ever have asthma with a wheeze prior to your unfortunate time in A/E recently ?

I used to wheeze and therefore recognise a deterioration in my asthma promptly -now I don’t wheeze at all and only guided by shortness of breath and low peakflow.

Do you know if people are presenting in atypical way more so during Covid months ??

[BlueBlobs1 in reply to happyvaccine]

When I was young I had breathlessness on exertion and short of breath with wind instruments. As an young adult I was less breathless efter exertion, but was exhausted. Then last few months I started getting more breathless like when I was young but also mucus in my lungs and chest tightness and narrow airways that I don't remember having before. I have read it's common to change over the years, esp from childhood to adulthood and then again around 30s or 40s. But I have never had a wheeze. For me it's getting progressively breathless less activity level and more mucus.

[happyvaccine in reply to BlueBlobs1]

Thanks it’s reassuring to know that asthma presentation can change as couldn’t understand why it had happened to me.Hope you develop good symptom control very soon

[Jollygood]

Hi blueblobs. I think we should start a petition to get limbo asthma officially recognised. I find it helpful to keep a detailed symptom diary and speak in numbers during appointments; ‘I’ve had X amount of bad days vs good days this month’ and ‘X amount of ventolin just to get through the day’.

[BlueBlobs1 in reply to Jollygood]

I think that's a very good idea, in fact I might try and program something to help me keep track give them a print out.

[BlueBlobs1]

Update. I had a lung function test, as jolly good said, numbers can be good. I felt like if I good get something official the wouldn't be able to dismiss me so easily. I have inflammed small airways that didn't respond to salbutamol. He said I would be fine sitting watching tv but struggle hills and stairs. Makes so much sense.

[Jollygood]

Ah ok, did they suggest treatment moving forward?

[BlueBlobs1 in reply to Jollygood]

Not yet, will be going over the treatment side with my consultant hopefully next week. Will be interesting to see what he suggests.