‘Textbook asthma’ if there is such a thing!

[RD23]

Got told by the paramedics today that I’m an enigma!

I’ve had asthma since I was two and I’m now thirty two, my wheeze has always been upper respiratory and my SATS are always 100% I have stridor with every attack and I’m that calm that paramedics have walked in and said, ‘oh it is you, you’re very calm’ my peak flow also only ever dips and dramatically when I have an attack, it goes down to about 200 if I can manage one during an attack and at my best it is 450-500. My specialist has told me not to take my peak flow every day as it’s not a good indicator for me as even when I’m full of cold it only goes down to 420.

I’ve being diagnosed with vocal cord dysfunction but I can tell the difference between the attacks and I found out last year my nut allergy was diagnosed, my body produces too much histamine when I’m stressed, run down or my immune system is low and that makes me have reactions, but I can tell the difference between all three. I know it can be hard to believe but imagine my respiratory system is like a car engine, I use it every day, I know how it works and can detect when it’s not running right and can tell the subtle differences between the different reasons for not being able to breathe.

The problem I experience is because my asthma is not ‘text book’ whatever that is, some paramedics, doctors, don’t know what to do with me and can’t explain/understand why I respond to drugs so quickly. It really gets me down because it seems like nobody believes me and despite the fact that when I got to A&E today, I still had a very audible wheeze and had been blue lighted in, I was taken off a neb because my SATS were 100% and Id had a lot of medication. The doctor was asking me questions I clearly couldn’t answer because I was struggling for breath and when I scribbled this down on a piece of paper the nurse told me there was no need to be rude! They also told me not to panic, not being funny, love but have you ever tried not being able to breathe and being taken off the medication that helps you?! Even the calmest, most laid back person in the world would struggle to keep calm when they’re struggling to breathe. Why do people not understand how scary it is?

Sorry for the massive post! I’m frustrated, tired, feel vile from the four nebs, hydrocortisone and adrenaline and would just appreciate not being treated like a freak!

[Tre]

What an awful experience for you, it just shouldn’t happen, you get penalised for being calm & the same for panicking - quite understandably - when medication is withdrawn. You’re right people especially professionals, sometimes just don’t understand how scary it really is. I hope everything settles down soon for you, take good care of yourself xx

[RD23 in reply to Tre]

Thank you.

My mum sat me down when I was old enough to understand and said she didn’t want to scare me but that asthma could be very serious so it was very important that I stayed calm, so that’s what I’ve always done, but sometimes it seems to work against me as people don’t think I’m that bad but I clearly am, as I get stridor.

It’s a horrible experience, it’s physically, mentally and emotionally draining. I know nobody appreciates what something is like until they’ve experienced it themselves but I don’t think the mental and emotional side affects of an asthma attack are really acknowledged by professionals.

I have no idea how I manage to stay so calm, I think another side of my brain must kick in and then when the attack is over I just cry because the enormity of what my body has been through hits me.

We’re blooming tough cookies us asthmatics!

[Lysistrata Administrator Community Ambassador]

Ugh. I am also not textbook (I am a freak really) and I loathe it when they can't seem to understand what it's like. I am genuinely calm about the breathing just get frustrated, though can also entirely understand why anyone wouldn't be calm. When I do get agitated/not calm is like you when they decide they know me and my body better than I do after multiple attacks and day to day, and say I am not having an attack and take meds off me, and/or get accusatory/start insisting I am fine. I have just had an unpleasant experience where the dr was really quite aggressive about all this. I told her (with difficulty) that I was *not* anxious and she said well you are, it must be you took too much salbutamol and your HR is high so you're anxious.

I tried to explain that actually if I sounded anxious it was because I felt horrible, I had been unable to move round my own home without struggling for breath and she had just taken away the drugs I knew would help. (And I didn't say, you are also being unnecessarily aggressive with me, appearing to blame me for my ABG results, I don't really trust you know about asthma, and you are refusing to listen properly or read the summary I have given you. This summary is something most drs find really useful because I am not textbook, and it saves me talking while giving them all the details they need - I really find it unnecessary and odd that writing something was seen as you being rude, though bad drs I have had seem to get really funny when I present them with my paper summary. The good ones, which to be fair has been more common, just light up and take it off to be copied.

I don't think this dr really got it. Luckily for me, she was fixated on my HR and to lower it she used a drug (IV magnesium sulphate) that doesn't really lower HR (helps some arrhythmias) but does help my asthma, so I got lucky! It still wasn't a nice experience though and yep the drugs can make you feel weird as well even though they do help.

[RD23 in reply to Lysistrata]

‘Because you took too much salbutamol’ I hate that one! I might have taken too much but are you seriously telling an asthmatic to stop taking the one thing that they knows helps them! I know after a certain amount it doesn’t work for me, but it’s my comfort blanket when I’m having an attack.

The cocktail of medication affects our moods and can make us anxious! I hate the anxiety card!

Yes, like we should actually know our own condition, I lived with it for thirty years! The doctor asked me if I’d taken my medication this morning, of course I did! No mate, just thought I’d try not taking it and take my chances on the asthmatic roulette wheel! 🙄

I once had a doctor who had a trainee with him and I could’ve hugged him, ‘this is what we call a professional patient, they live with their condition and know it better than anybody else and know what works for them, so we are guided by this’ give the man a medal!

[Lysistrata Administrator Community Ambassador in reply to RD23]

I don't have time for the 'too much salb' really as I feel it's one of those things they throw out without really thinking. I had been told to do it a certain way by my asthma nurse who suggested regular salb plus in between as needed, and taking a hit of 10 in the night had allowed me to get a little sleep in an otherwise very bad night. The day before this I probably had more salb and lungs were not as bad, and HR was lower. My HR was still high even a few hours after the last salb while I was still struggling, and this is classic for me. The magnesium did lower my HR but it did this in conjunction with improving my breathing, not because it has an effect on HR by itself. The asthma guidelines do actually say that high HR is a feature of a severe attack and is not purely due to salbutamol.

I know they have to ask have you taken any reliever but do roll my eyes a bit sometimes (I am pretty impatient in this situation I know). I suppose it's unfair as they don't know I am a frequent flyer necessarily - though at the hospital where I am seen by the cons they do sometimes know and wow it makes it easier. They just say oh yes one of Dr J's, we know about you, what helps? Sadly last time I went there I got someone who paid zero attention to anything I said and to my summary, and it was fairly stressful till her boss got involved and felt my inability to get to the edge of the bay meant I shouldn't go home, but they are often good there and they seem to get the unusual aspect a bit more.

This last experience was at my local and the dr also decided it would be good to quiz me about where I lived vs the clinic I go to, when I can't breathe well, and in a rather aggressive tone again. If you read the fricking summary it would explain!! (It's a specialist asthma clinic). I do love it when they understand that they need to work with us and we can explain - and for me the written summary is there to make things easier for everyone.

[RD23 in reply to Lysistrata]

I have a laminated sheet that I keep in my handbag that has everything they need to know when an ambulance is called and then when you’re being treated. You would think they would get from this that you’re pretty clued up about your condition!

It was my preventative medication he was asking me about! I find it hard to believe that somebody wouldn’t take this. I also look very young for my age so quite often get patronised and get the ‘silly little girl’ treatment! 😡

Just frustrated today, our local A&E are usually great but I do find a lack of consistency there and from hospital to hospital that very much depends on who you get seen by. I got told by one doctor that it was standard treatment for asthmatics to take your ventolin every four to six hours after a severe attack to prevent another one, this was the first time I’d been told this so I wonder how ‘standard’ it is.

[Lysistrata Administrator Community Ambassador in reply to RD23]

Oh I've had a lot of 'have you taken your blue inhaler?' Nope I was bored and felt A&E would be more fun... :eyeroll: Just an extra step of explanation that yes I have taken it, it didn't work etc.

I agree there is a lack of consistency as I have had vastly different treatment for the same level of attack. After 2 bad experiences in a row at different places that are more often good, I am now really not in the mood to ever go back.

My asthma nurse suggested the regular salb whether or not I was SOB at the time and actually her explanation made a lot of sense - she said it was like taking a painkiller regularly and should make it easier to stop things getting worse, which made sense as nebs done that way help me after an attack. I tried it for a moderate flare and it really helped. However, I needed her to be the one saying it, partly because I used to have cons who were not that great and constantly told me off for taking too much salb without wondering why.

The previous person to tell me to do this phrased it as 'you may need to keep taking your inhaler a few times a day'. This didn't impress me as I already have to anyway - he didn't explain the whole regular plus in between concept. I also found out that he'd given me advice like a newbie to asthma to my face, then turned around and told his team I hadn't even had an asthma attack and he was 100% sure it was dysfunctional breathing. Which I am on top of, have ways to deal with, has never been the main issue and I 100% would NOT ever in a million years turn up at A&E with thinking it was an attack! Felt so insulted especially as he hadn't even bothered to discuss it to my face, just wrote it on my discharge which is bound to cause issues in the future.

Sorry the rant is strong with me lol.

[Triggerina in reply to RD23]

I think the doctor who said you were a prof patient was a wise one. Most people with long term asthma are indeed experts about their own particular asthma needs .

[RD23 in reply to Triggerina]

Definitely! I know I’m not a medical expert but when it comes to knowing my own body and my asthma, I’d say I’m the best qualified to know what’s going on with me.

I can tell the subtle differences in wheeze in some attacks and I know exactly when I need help each time.

[Js706]

Also a part of the freaky asthma team! And I often get stridor (plus or minus a proper chesty wheeze) when I have allergy based attacks - generally this results in them asking if I have dysfunctional breathing or vocal cord dysfunction (which have either been dealt with or ruled out) and stopping meds! I did have one brilliant doctor in a&e once who noticed I was itching at the same time and treated it as both an asthma attack and severe allergic reaction, so I actually settled pretty well and was able to leave a&e without an admission that time but it doesn’t happen often!

I think half the issue is that “asthma” has ended up as an umbrella term (a bit like copd) for a variety of conditions with fairly similar symptoms but that actually have quite different root causes and they’re only just starting to be able to tell them apart - so hopefully things will improve soon!

[RD23 in reply to Js706]

I get that! I got diagnosed with vocal cord dysfunction a few years ago but I’ve learnt to tell the difference between my attacks, not that anyone really trusts my judgement!

It’s reassuring to know I’m not the only one who hasn’t got ‘textbook’ asthma, I’ve always felt like I’m somehow weird!

[Js706 in reply to RD23]

There seem to be a fair few of us without textbook asthma on here! I guess it makes sense as we all come on looking for others.

It’s difficult because I do understand that there are some patients who don’t know their condition/take their medication etc but when you’re a “frequent flyer” and under specialist centres etc (often one of the first things I try to tell them!) it tends to be a waste of breath... especially as the stuff they’re asking about is looked into as part of the first appointment at the difficult asthma clinic I go to!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ugh I agree and this is why I created my summary - it's supposed to help with that and when it's used properly it does. However, there is a certain type of dr who just wants to ignore it and/or doesn't look at it. This particular one didn't even ask what medicatlon I took - that alone would have been something of a clue. I get that they are busy and asthma isn't their speciality but I am trying to make things easier, so I don't have much patience when they dismiss me for trying!

[Js706 in reply to Lysistrata]

Yeah.... I also have a summary but like you it can be ignored!

I’m thinking I might mock one up and take it to my next appointment and see if I can get my consultant to sign it or something (especially as he has now seen me during a couple of particularly bad attacks).

My current fun one is actually having really decreased air entry/a silent chest rather than a wheeze, which I’ve had a couple of times this year. One of them a&e thought I was quite nice and stable and sent me off to the resp hospital where the respiratory registrar listened to my chest and declared that he was putting me straight into IV aminophylline because nothing was moving! So might have to add that to the summary now 😂

[RD23 in reply to Js706]

I was thinking of doing the exact same thing! Great minds think alike!

[Lysistrata Administrator Community Ambassador in reply to Js706]

I have my own but also the clinic I go to won an award for creating an 'asthma passport'. When they gave me one of those I showed them mine and they said oh ok you've done it already, you can use either! (Felt v pleased with myself lol). I alternate as the official passport says 'take me to resus' and I don't want them to get weird with me if I'm in majors and think I am demanding more than is needed on that occasion.

I too have the quiet chest issue quite a few times, but not all drs seem able to detect it - I did have one OOH GP patronisingly tell me I would only get that in a severe attack. Err, I wasn't the one listening, so what you're saying is the drs got it wrong?! Sadly never had IV amino as I think it would do a great job when other things are slow to work - I take Phyllocontin which I love and my cons hates, so we always have a debate. My view is they can take it off me when they invent a biological that works for me.

I need to check my summary as I think it just says no wheeze...I don't always have the quiet chest but often enough that I want them to pick up on it. I did once have the comment during a relatively bad attack of 'you have a wheeze now...that's a lot better than nothing!'

[Js706 in reply to Lysistrata]

Oh nice! Good on you! And on them for coming up with something similar. Yeah the time I had the excellent experience with an allergy the doctor had picked up nothing was moving and I think she nearly cried with happiness when I was wheezing when she came to review me 😂

I LOVE IV aminophylline, I’ve ended up on it a few times this year (although I’m up to about 23 admissions in about 18 months so it took a while!). But while it does help it’s a pain, it takes a while to get you into the right range and you’re normally stuck on it for a good few days. And the times I’ve been on it I’ve either been on HDU or “for an hdu bed if available” so I was pretty rubbish.

But it’s good in that now when I do reach that point they put me on it, rather than debating whether it’s worth trying (as apparently doesn’t always help people/isn’t worth the side effects).

[Lysistrata Administrator Community Ambassador in reply to Js706]

Yeah I know others who have been on it and it does seem to have its pros and cons - I wonder also if it depends which hospital you go to.

I think I'm lucky because I usually tend to recover reasonably well from even severe attacks, though often not as quickly as they think I have, and probably don't get to that point as I am just good enough after the mag etc. So I don't get stuck on the ward for days, which is good, but then I think I look better than I am and could at least do with a few more nebs! Including atrovent which I love (I sound like a weird druggy now...)

Usually in the acute stage I take slightly longer than they expect to get out of it and they start worrying, then I will begin to improve and after that it's a slog through the subacute part and hoping they don't decide they can stop it all because I'm not about to expire. My pet hate is them seeing me ok sitting in bed and not realising I still have to crawl to the bathroom and need a neb afterwards. If I can't get to the bathroom without feeling like I'm doing a marathon, I don't want to go home - I won't make it outside and I don't have home nebs!

23 admissions in 18 months ugh - I hope you manage to reduce that soon! My lungs are more keen on daily grumbling which is annoying but probably less disruptive.

[Js706 in reply to Lysistrata]

Oh man I love me some atrovent too! I’ve generally sussed if they whack me on a few nebs back to back I’ll often start to improve and if nothing is really happening by then I need “the good stuff” as I like to call it (anything IV basically!).

Yeah sometimes they try to discharge me without getting me to walk anywhere and then they’d find me 10m from my bed half dead and change their mind 😂 they’ve now learnt and tend to include that I’ve been up and around as part of my discharge criteria.

Mm yeah it hasn’t been brilliant to say the least! This year in particular has been pretty awful - I ended up with some kind of horrible bug last November and I think I’ve only just fully cleared it and the after effects from my system! So 2018 so far has had I think 9 admissions, with at least half of them being a week 😩

BUT I’ve managed to hit a month between admissions for the last couple so we’re definitely getting there, if a little slower than I would like! Even if I could go back to where I was a year or so ago with 6-8 weeks in between flares I would be happy, as at least I could just about cope on my course with that.

[RD23 in reply to Js706]

I always refer to the IV meds as the good stuff 😂

Hopefully they can find something that will help you, my specialist has put me on Spiriva which has helped

[Js706 in reply to RD23]

Oh yeah I like spiriva, that helped me a bit too - glad it’s helping you!

Everything they’ve added in has helped a bit, but not quite been enough to gain control. Still, hopefully they’ll have some kind of plan at my appointment next week!

[RD23 in reply to Js706]

Yep, it seems to just be a case of trial and error and small wins.

Hope all goes well and they get closer to getting it sorted

[Js706 in reply to RD23]

Definitely!

Thank you. I hope things go well for you too!

[RD23 in reply to Js706]

Thank you

[RD23 in reply to Js706]

I don’t think I’ve had that.

Luckily, in the grand scheme of things, I go about two months without an attack, it flares up, they fix me and I’m fine again for another couple of months. Trouble is when I get a team who doubt me, they don’t give me the full whack treatment and I end up in again, I get the full treatment and then I’m fine again! But when this happens, my body is knackered from the first attack and it’s really hard work to get myself through it. I’ve had it happen three times in one week with three trips to A&E and the physical and emotional strain is ridiculous!

[Js706 in reply to RD23]

Oh god that’s awful. I hate it when you end up bouncing in and out, it’s exhausting enough at the best of times. Let alone when you don’t feel you’re listened to and are forced to experience it repeatedly.

I often find I’m in a weirdly calm state until I start to recover from the attack (I guess maybe it’s like a fight or flight type response?) and then what has happened catches up and I tend to break a bit!

[RD23 in reply to Js706]

Yep! I’m exactly the same! One paramedic explained to me that when you’re body is in flight or fight mode it cuts off your emotions, so when I start to get upset, it’s a good sign as it means I’m coming out of my attack.

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ugh the bouncing is horrible - I hate it when you know you could be fixed if they would just do things properly! Have had that bouncing a few times and it's awful - once before a job interview and every time I was stupid enough to mention that they decided it was anxiety, instead of realising I was just worried I wouldn't make it to the interview! Got 2 awful hospital experiences followed by bad GP and yep it was very hard so really sympathise.

Js706 crossing fingers you can increase the gaps as not much chance for a life with all those admissions! And the recovery too which I always underestimate.

[Js706 in reply to Lysistrata]

Oh no that sounds awful, and incredibly stressful! Really wouldn’t help things.

We’re getting there at least. And I agree, I think it’s the recovery (or lack of it this year) that’s been more of problem - it’s very easy to think you’re a lot better than you are and overdo things.

[RD23 in reply to Lysistrata]

Yep, some paramedics/doctors think it’s great and follow it but I think others feel like I’m trying to tell them how to do their job. I’m really not, I just want to get better and be able to breathe and I know from experience what my body responds to.

[Js706 in reply to RD23]

Yeah it’s a difficult situation to be in! You kind of want to push because you know what helps but also don’t want to be too awkward and annoying.

I think having something “approved” by our consultants should help, even if just to make it seem a bit more official!

Although at least overall since I got to the difficult asthma clinic they have taken me more seriously on the whole - if not at a&e they’re pretty good at the resp hospital now. So I don’t have quite as many annoying experiences now!

[RD23 in reply to Js706]

There do and it’s so good to have other people to talk to who really understand what it’s like.

I’ve got to know my condition inside out because I like to understand what is happening to my body and also if I can’t help myself then what chance do other people stand? Maybe it’s a personality thing though.

My difficult asthma clinic are great and have done loads for me so it’s not all bad!!

[1974lovejoy in reply to RD23]

I got diagnosed with VCD too but I can tell the difference between attacks like you can .. I find though as soon as a dr knows you have this condition they dismiss you !!! I have a brilliant GP who despite my undiagnosed diagnosis of asthma by consultants supports my treatment as he says I know what I need !!! Only need to make a telephone call to him and i get what I need .. he advised home nebs as well as on my second chest infection in 4 weeks and need to stay out of A/E!!! Oh and don’t get me started on the anxiety card (eyes rolling !!)

[RD23 in reply to 1974lovejoy]

When I was diagnosed with VCD, the specialist said that if it feels like an elephant is sitting on my chest it’s my asthma, if it feels like my throat, it’s the VCD.

It’s disheartening to read we all have the same experiences.

[1974lovejoy in reply to RD23]

That’s exactly what it feels like !!! Still not got a confirmed diagnosis of asthma but getting continuous infections ... I just know the difference between the VCD and the chest issues !! Not that many Drs believe me especially when we are so SOB we can’t stand up for ourselves !! It’s very sad to read in this day of medicine there are so many of us that struggle with getting treatment !!! Too many Drs look at machines these days and not patients !!!!

[RD23 in reply to 1974lovejoy]

Exactly what I said to my mum! I know they have a job to do but if you’re staying in front of a patient who is clearly struggling to breathe surely common sense prevails?! Don’t start asking me what happened (that question frustrates me no end, we duh!) and what time it came on, I can barely breathe let alone talk!

They’ve also given me prednisolone, which is what I usually have, but they’ve told me I don’t need to take it over the next few days as my chest was clear, only to take it if I get short of breath. This just doesn’t make sense and I questioned it as I usually get sent home with pred for five days to help keep my airways open and he said that’s only if my chest isn’t clear. I explained that the way I was after recovery is how I always am (it’s also just crossed my mind that surely they wouldn’t send you home if they didn’t think your chest was clear) and he said again that my chest was clear and the previous doctors were just being cautious. Now I know taking lots of steroids has it’s side effects but in the short term surely it’s better than another admission and being pumped full of drugs?! I think I’ll stick to caution! Especially where my breathing is involved!

[RD23]

This group is great by the way, it really helps to have people to talk to who know exactly what it’s like.

[mauschen]

I also have non text book asthma and stay calm during an event. I regress into me mode, I shut out the world and concentrate solely on my breathing. Sometimes this feels like such a long time as I struggle to get a rhythm going again. All this time my heart is racing, pounding in my chest and ears yet outwardly I appear to be in control. Inhalers don’t usually help but a calm, quiet environment helps. What doesn’t help is the do gooder who wants to slap me on the back.

As you say, we know our own bodies and have more insight into our condition than those who would propose to treat us. If someone tried to remove my nebuliser, I would go bananas.

[RD23 in reply to mauschen]

I’m glad it’s not just me and for the nurse to accuse me of being rude is not on at all!

It’s also reassuring to know that more of us keep calm than people would have you believe.

Thank you for letting me know I’m not alone

[mauschen in reply to RD23]

You’re welcome@RD23

Once I struggled into the local doctors with an upper respiratory virus which had set off my Asthma. The doctor sounded my lungs and announced cheerily, „your lungs are clear and air entry is very good, I can hear it entering the base of your lungs“. Oh my, someone at the medical school forgot to tell him that air entry is not the biggest issue, it’s breathing it back out which is the biggest issue.

[Lysistrata Administrator Community Ambassador in reply to mauschen]

I do get worried when I feel like I know basic stuff they seem not to. I am not an expert at all and don't think I know better than anyone else, but I do not want a lecture on incorrect physiology from a healthcare professional who is meant to be looking after me. I have had several, usually along the lines of 'you know bronchospasm means you have a wheeze, so if you don't wheeze the nebs won't help' and 'a fast heart rate means you are anxious'.

On the flip side I have also had some very good ones. On the topic of air entry, had a paramedic once who said 'it's going in fine but I can't hear much coming out!' Shame the dr in the hospital then went for 'you are coughing because you had too much salbutamol'.

[mauschen in reply to Lysistrata]

Scary isn’t it

[Smudge12]

You are so right. Unless you have asthma no one knows how hard it is not to panick when you can’t breathe! I have had asthma since i was 24 and thank goodness only had one really bad asthma attack which landed me in hospital. Everyone said” try and calm down” as I had gone into panick mode. It’s so difficult when you are literally gasping for breathe. So frightening. Am having problems at the moment as my asthma isn’t very good at the moment but am sure things will get a bit better hopefully soon. 🧐

[RD23 in reply to Smudge12]

So true! I’ve had it since I was two and I’m now 32, I can remember my mum telling me when I was little to stay calm when I have an attack and mainly I do, but if someone takes me off a neb then I will panic! People really don’t get just how scary it is and that in the back of your mind is the, ‘I have to do this, I can’t stop breathing or that’s it’

Sorry to hear you’ve been unwell, is it this weather? I ended up in A&E yesterday as my chest just can’t cope in the humidity.

Hope you feel better soon.