Ventolin and Mind Games

I'll start by saying I don't like using my reliever. Not that it causes side effects. Just because I'm not a fan of taking medicine in general. I'm the sort of person who prefers to wait out a headache rather than take aspirin.

About two three weeks ago, my doctor gave me a “lecture” on why I should use ventolin when I start feeling symptomatic and not just “sweat it out”.

There are two reasons for this from his point of view

a) by catching things early, we can avoid them escalating. And in particular escalating to the point where it takes more than two puffs to quell things.

b) it messes up his numbers – well, he didn't say that, but that was the point. He needs to know how often I'm feeling symptomatic and how long the reliever works to stop my being symptomatic. A count of how often I use the ventolin gives him a count of how often I'm symptomatic. If I don't use the ventolin in the first place, he has no way of knowing how long the ventolin would have worked.

It all sounds very logical and sensible, BUT every time I start feeling difficulty breathing I get into these mind games.

a) I think, sure I'm working a little harder to breath, but its only a little harder, so maybe its just in my head. If I ignore it, it will go away. Sometimes that does work. Most times it doesn't. I usually end up giving in and using it when I get to the point that there is something I need to do (errand, housework) and finding it hard to do. Or when it just plain hurts to breathe.

b) Peak flow as an objective measure doesn't work for me. If anything it encourages the mind games. According to the Mini-Wright website my “predicted” peak flow is about 420. However, for me, that's actually where I start getting symptomatic (verified by checking peak flow when I start feeling symptoms). This makes me say to myself “see, it really IS in my head”.

I'm a trained classical singer with a particularly forceful resonant voice so it would stand to reason that “predicted” is not personal best. It is hard to know right now what my own personal best is because I have no current benchmark. The best I've blown in recent days is 460, well above predicted. Years ago, when I tracked peak flow my personal best was more like 490-510. However, it was a different peak meter and I don't remember how it was calibrated.

Even if I did know the calibration, I wouldn't know what the current number would be. I was younger and so one might say my current peak flow should be lower now. Then again, my old best was also before I had a really good voice teacher and part of studying voice is learning to maximize force with minimal effort and air flow volume. So there really is no way of knowing what my current personal healthy best actually is.

Also, though I don't have any recent spirometry (asthma was very quiet for several years before this), I do have a copy of a very old test that showed that for me peak flow and FEV1 don't necessarily correlate: on the test I had a pre-BD FEV1 of 68% but a peak flow at 94% predicted.

Intellectually, those are both good reasons to not use peak flow as an “it is in my head” excuse. None the less, I do.

c) Partly because easy to get numbers like peak flow don't work, my doctor is relying very heavily on my symptom reports to make decisions. If I need the ventolin less than every four hours for a stretch of time (e.g. half a day or more) that's our current sign I'm in the yellow zone and should call in to discuss whether medications need to be adjusted.

I react to this by turning the four hour mark into a competition: can I wait it out to four hours? I don't really want any more medication if I don't absolutely need it. My doctor is pretty good at not turning bumps on the road into an excuse to throw more drugs at me. Still, I'm not real crazy about giving him any more reason to think about it than necessary.

I don't want to understate symptoms because that is clearly not smart. On the other hand, I don't want to over read them either because I'm not real crazy about how many drugs I'm on and certainly don't want more.

On the other hand, when I do use the ventolin based on symptoms rather than hold out until some fixed time frame, I'm a lot more functional overall. It is easier to focus on getting things done, when breathing isn't a low level form of calesthenics.

Any thoughts?

17 Replies

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  • Beth, I swear you must have some kind of mind-reading ability as all this goes through my head on a regular basis!

    Afraid I can't help, because I have the same. In my case I actually wish my doctor had said this, because I am also very confused about when to take it for a different reason. I have a breathing pattern issue as well as the asthma (caused by the asthma actually) so I'm meant to do breathing exercises first to see if that helps. Problem is, I was using it a lot, maybe more than needed at times, because of this confusion, and I don't think the doctor believed me when I said yes, I was doing breathing exercises before. They think my improvement is down to the exercises, which may be partly true. I think a lot of it is also down to the recent hefty course of steroids plus other medication. A year to 18 months ago, though, I was in your position where I think a lot of it was asthma and I'd also try at times to hold out because I thought 'I can't possibly need that much'! Maybe some of it was breathing but also I probably did need it more than was ideal, and certainly I now can go way, way longer on most days without the 'no I REALLY need it' feeling than I could have done before (it is possible...).

    I should add that like you, my PF doesn't really help as a metric, which makes me use reliever as a metric instead (mostly accepted now by drs, I think because they know about me and PF, or I will work on it anyway and next time point out that I really am doing the exercises before I head for the blue; I'd like to know myself how well controlled I really am and it's pretty confusing right now.)

    My peak flow is 600 best compared to about 470 predicted - so it's taken a while to get an understanding that if it looks 'good' for predicted it's not really that good, but it happens now, with doctors I know anyway (I'm not a trained singer but have done a fair amount and also played the oboe which I think contributed). I also seem to be awful at doing PF, and spirometry. Sometimes I need bronchodilator just to get sensible results, and when I do, like you the FEV1 tends to be lower than it should be and PF/FVC are excellent. But atm I have no idea what my PF should be because I thought I had it sorted and now am unsure of my technique again! So I'm having to go on symptoms, but do exercises before and work out if it 'feels' like asthma or breathing issues.

    Sorry for the ramble; I have no idea if that made sense, or is useful, but wanted to share my thoughts as you do sound similar to me in some ways. There are times I long for my PF to drop and rise reliably, and for a wheeze, as I'm not sure it would make me any worse and it would certainly make it easier knowing what to do!

  • Wow, this was written for me too, I too always wait till my head is about to explode before taking paracetamol for a headache, and always think, 'Nah I'll be ok without reliever' then give in and think 'Agh that's better, why didn't I do that in the first place?!'

    When my asthma is good, I can reduce my meds and be rarely symptomatic so think maybe its all in my head, look I'm fine I'm sure I don't need this preventer etc but then I get a flare up like now and I'm floored with medication increased to the max I'm prescribed.

    My best pf is 570, well above my predicted, and only during a really bad spat, does a dip in pf correlate to my symptoms. My last spirometry 3 years ago suggested I didn't have asthma at all but of course was done at a 'good period' and with a pf of 570, is gonna be reaching a maximum plateau where even broncodilators cannot possibly increase it much furthur.

    Somedays I would love to wheeze so there was no question to me, or anyone else for that matter , that it was in fact asthma and I do indeed need Ventolin, rather than questioning myself and worrying about using my inhaled in public incase people think I'm doing it for effext/sympathy/show

  • Yup me too! I hardly ever use my reliever at first symptoms. Also because that way I dont have to admit to being symtomatic and therefore can put off the trip to GP or AandE for as long as possible. Because my action plan works on an and/or basis as regards use of reliever and/or peak flow.

  • I deffo don't take reliever whenever I have symptoms, I wait 'til either symptoms get worse or are annying/interfearing else I'd be taking much more than I already do.

  • So I guess I'm not alone on this. :-)

    Lou: that is exactly my feeling, but my doctor's thinking is the opposite, i.e. by using it early on, one actually extends the period for which the ventolin is effective so one uses less not more.

    Rose: That really makes it a loaded decision.

    Early on in this exacerbation my doctor was raising the H word as in “if you really need ventolin that frequently perhaps you should be in the hospital”. For five or six years all he'd done was prescribe refills and suddenly he had a full fledged seemingly steroid-resistant severe asthmatic. It took him a while to realize that even if I'm struggling there is no evidence that I'm brittle/prone to life threatening episodes). Every time I went to his office, I was half afraid I'd not go home. That really added to the stress of the ventolin or not decision. Fortunately, he's come round to the idea that ventolin use is a reason for a phone consultation, not a doctor's or hospital visit.

    You have my empathy.

    Butterfly:

    --- then give in and think 'Agh that's better, why didn't I do that in the first place?!' --- Yup.

    --- When my asthma is good, I can reduce my meds and be rarely symptomatic so think maybe its all in my head, look I'm fine I'm sure I don't need this preventer etc but then I get a flare up like now and I'm floored with medication increased to the max I'm prescribed. --- yup, that too.

    Philomena: your rambles are nothing to be sorry for. Even though breathing plays a different role my experience of asthma, your thoughts on the matter still triggered a helpful line of thinking for me.

    --- I have a breathing pattern issue as well as the asthma (caused by the asthma actually) ---

    That makes sense to me as a singer. There are a lot of common everyday 'good enough' breathing and vocal patterns that break down in high performance situations: singing complex passages (long legato phrases, coloratura), acting, teachers lecturing all day. For example, shoulder breathing or supporting the voice with the larynx as a secondary air pump. In a way, asthma is also a high performance situation, so it would stand to reason that some asthmatics would find that breathing pattern issues kick in when breathing is more difficult.

    In my case, I generally cope very well with obstruction using breathing techniques I've picked up over the years – some from singing, some from swimming, some from trial and error, some from reading about ways to deal with asthma (e.g. pursed lips). Perhaps too well.

    Both my doctor and I suspect that less than ideal breathing has been flying under the radar screen for a long while before this exacerbation because I regularly and often subconsciously accommodate in ways that don't create anxiety. Then I don't even realize I'm in any sort of distress. If it goes on long enough my muscles, particularly the abs, get tired. If a trigger comes my way and my lungs are already irritated and inflamed, then things go out of control and are hard to reign in. That's pretty much how I ended up going to urgent care after 'just singing'. When I started to sing my abs felt like jelly as if I'd just finished 40 rapid sit-ups. Presumably I'd been having some degree of trouble on and off for several hours before and just hadn't noticed it. Then when I started having difficulty a little later it was hard work to get my breathing back under control because my first line of defense was already a bit put out. Or as my doctor summarized it in his notes “uses accessory muscles and then bottoms out”.

    I don't remember if my doctor explicitly said this, but I think part of the reason he may be pushing “ventolin on first symptoms” may be to help me be more aware of what is going on. It's one thing to note in one's head that one is having a bit more difficulty. However, as Rose points out, actually taking out the blue or the nebulizer brings it into reality and out of the world of thought. Like Rose, I dislike the admission. I'd actually rather this all be in my head.

    Another reason is that if I catch things early then there is less reason for me to work so hard to breathe thereafter and we short-circuit the whole 'gets tired and bottoms out' dynamic.

    ------

    In terms of where I'm going with this, I think I'm moving towards trying to implement the “first symptoms” thing as a kind of experiment to see if my doctor is in fact right that early use will lead to less use.

    However, I need to figure out a way to do it that makes it less of a loaded issue in terms of the action plan. Perhaps I'll just class it as an experiment but only report in if the reason I'm using the extra ventolin is because of my usual “must use” standards (i.e. too busy breathing to focus on other things, pulling in at the sternum so much it hurts, can't really talk and need to have a conversation)?

    -----

    There is also the question of what really counts as first symptoms. I imagine this is a little different for everyone. But sometimes I wonder if I actually know what healthy breathing is: do I think things are irregular when they are not? Or do I thing things are OK when they really could be much better? Or a little of both? One of the odd things I've realized during this exacerbation is that there have been certain points where I actually think I'm breathing better than I remember in years. A kind of unfamiliar “oh you mean I'm supposed to feel air moving all the way down there?” feeling.

    Some of the things I suspect are first symptoms:

    * when I start noticing myself doing the occasional forced inhale or exhale. That's probably a symptom for me because when I'm breathing well, its not something I can really do intentionally and even if I could it would be uncomfortable and perhaps make me dizzy. The fact that it feels good and makes me more comfortable suggests I'm correcting for something. It certainly feels like I'm correcting for some sort of mechanical resistance. Also my lungs tend to feel a bit irritated when I breathe out which probably isn't a sign of normal breathing either.

    * when inhaling and exhaling makes my lungs feel all irritated or “warm”. I tend to perceive that as annoying along the lines of a minor headache, rather than frame it as a breathing problem, but really lungs aren't supposed to feel that way when you are just sitting in bed reading or doing things indoors around the house or office.

    * a certain kind of wonky feeling. This is harder to explain because I can't see the direct connection to breathing. However, as a kid when I'd feel this I'd just have to stop what I'm doing and rest or else I'd start hyperventilating. As an adult the few times I've ignored the feeling and pushed through – or have been in situations where there was no choice but to push through – I've ended up with a more or less significant flare up. I felt that way before I went out on a must-do errand and ended up at emergency the first time during this exacerbation. I felt that way half way through doing errands last Wednesday and then came home and crashed and ending up finishing the day with nebs every three hours.

    * when I notice my abs are pumping even though I'm not doing anything energetic. Or when my sternum is pulling in just a little bit, but not enough to hurt. Note: this isn't as drastic as it sounds – even my doctor agrees that this is a kind of adaption for me, not a danger signal. Still, this is a lot more effort than normal breathing should take. In theory, the diaphragm should just move on its own, it shouldn't need ongoing extra support as if I were singing some sort of complex passage rather than just going about my business.

    * there are probably more, but that's about all I can think of for now.

    So much for my long ramble. I hope this is helpful to someone else, and if not, thanks for at least reading. Somehow it is easier for me to think things through when I imagine myself explaining things to someone else.

  • wow this is totally me too! Though I'm generally good at avoiding both my inhalers! Haven't used my symbicort for the last 3 weeks.... left it at uni! Oops!

    I find it hard to tell the difference between asthma and just ordinary out of breathe, especially when I'm running up a hill to lectures on a cold morning! I do find that if I think it's asthma it lasts for ages but if I ignore it, the breathlessness goes eventually. For now, I'm ignoring everything and seeing where that gets me!

    Perhaps knowing how far you can push yourself is one of those things some people can do and other just can't. I go by the idea that when I can't stop coughing after 10 mins it's time for the ventolin!

  • Rachel, tut tut ;) Hope you're doing ok though?

    Beth: just wanted to respond after seeing your post, re breathing issues: you may well have some kind of very subtle breathing pattern issue yourself which is interacting with the asthma issues given you aren't controlled. I have learned a lot about this since going to the specialist hospital because the physio there is so expert and knowledgeable (the other physios have been good and competent though have not had a chance to address the issues properly so I was a bit wary about the whole idea, but this one really, really knows her stuff).

    a) You can get a respectable score on the Nijmegen questionnaire which they use to assess hyperventilation, seem ok a lot of the time even to experts and not have most of the symptoms, but still have a breathing pattern issue.

    b) A lot of the time, it's not related at all to anxiety (a relief for me to hear, and it may not surprise you but if you google it the vast majority of what you find will link it to anxiety even though it only overlaps with anxiety and panic disorder, and that in a minority of cases of breathing pattern disorder.

    c) Most people have some bad breathing habits, but they're not all symptomatic.

    d) Singing doesn't help as much as I always thought. OK I'm not a pro and only had minimal training, but I figured given I've been singing since I was 6 and had people drilling into my head since then that you 'BREATHE FROM THE DIAPHRAGM' etc, that I would know how to breathe properly! My GP also thought this, as he remembered singing lessons at school, and was rather sceptical about my having a breathing pattern disorder though he does think all asthmatics will have some issues at times with poor breathing pattern, just maybe not as entrenched and tied up with asthma as mine seems to be. BUT the physio said actually (and I didn't have a chance to go into this properly) that singing technique is not necessarily good for your breathing pattern. Also, knowing how to do it right ie diaphragm, not upper chest, doesn't mean you always do.

    e) Breathing 'badly' can be sorted but it can also trigger the asthma as well as be triggered by it.

    f) My physio also said, which sounds like some of what you're saying, that if you do need the inhaler, it's like painkillers. If you take one right away, your '1 or 2' pain goes and you're back to 0. If you wait till you're at 4 or 5, you take it and you go back to 2 or 3, not 0. I may be mixing this up in my head so apologies if it's totally wrong, it was a while ago but she said if you don't deal with the SOB, whatever the cause, as soon as possible (with exercises or Ventolin), then it's much harder to get back to 'normal'.

    g) It's all very confusing! The physio tells me sometimes I breathe fine, but sometimes it's too deep. Every doctor who has ever listened to my chest (and one physio, ditto) has told me that I'm not managing to breathe deeply and can I not do better than that; one even said that I really don't seem to like taking deep breaths at all and did it hurt? Confusion!

    I'm still trying to work on what type of SOB means what; right now I am pretty sure that it's asthma, and I'm needing the reliever more than I'd like but pretending it's not an issue because I don't want to have to do anything about it especially involving steroids (I used to be happy with anything which didn't involve being told it was in my head and I didn't need any reliever or any help; now I just want to pretend it's not there...not the best strategy but I don't like dealing with the 'weirdness' and the usual 'well you don't have a wheeze'.

    oops another epic - but hope it helps!

  • Just adding to what I said earlier. I don't take ventolin for mild symptoms as symptoms will ofrten go away. Like when I pass traffic fumes or smokers I'll pretty much always have symptoms, but when I get away from fumes or smoke mmy symptoms go. Sometimes lungs will be more twitchy though and I won't get away without using ventolin. Maybe I'm doing it wrong, I'll maybe chat it through with cons.

  • Lou: I do the same. If it is a short term thing that goes away with the trigger it doesn't ""count"".

    Philomena: I appreciate your observations about how singing has not helped you as much as you expected, but that isn't my experience at all. I do find the things I learned to do as I studied voice (which incidentally for me was at least partially speech therapy), tremendously helpful in getting breathing back under control and in preventing it from getting out of control in the first place. Not long ago, I told someone that one of the most important ""medicines"" I have for asthma is all the things I learned about my body, breathing and singing through the years.

    Studying voice is very different than just singing a lot or even getting some group training from a choir director. Also there are a lot of voice teachers out there: some very good and some horrid. If you had the misfortune to work with one of the horrid ones (even if he or she was a very nice person), very real damage could be done to your breathing style and even your voice. My guess is that your physio has seen some of the wreckage in various of his/her patients and is confusing it with the result of good healthy vocal training.

    As for what singers should do vs. what they actually do. I do in fact breathe from my diaphragm. That's not even a matter of debate. The only good thing about this two going on three month post-cold exacerbation is that my abs are now so solid that you could probably bounce a basketball off of them and I'd barely feel it. And i didn't even have to use a rowing machine. :-)

  • Hi,

    That makes perfect sense - I didn't get a chance to discuss it properly with the physio, but completely agree that voice training like you did is not the same as what I had, sorry if that was not clear. I had just thought that ANY singing at all would have helped, in addition to the oboe (same idea there, and I had a lot more formal training in that) and would have meant that I did it right without thinking about it, but it seems while I know perfectly well what is 'good' breathing and am able to do it a lot of the time, there are also times when I don't do it so well and I haven't noticed. And it sounded like some of the advanced techniques would not help, but perhaps that is when you do them wrong.

    Perhaps it needs a lot more training, such as you've had, to make this happen? I think maybe even what I've had made it much less obvious; all the physios before this one said my breathing pattern was fine and it took a long time to actually identify this additional issue properly and work out what was really going on.

    (Not that you were really talking about it, but apparently rowers are some of the worst culprits for the wrong sort of breathing, so I have been advised not to use the rowing machine - sounds like at least asthma has some benefits for your abs! ;))

  • LOL I also wait as lobg as possible before admitting that symptoms are there or that theyre symptoms that need attention. I have also had several experiences where people say to me: youre struggling. And only after that would I realsie that yes I am struggling... Like Beth I think a lot of my minor symptoms just dont count...

  • Ooohhh, you've made me start thinking about my own behavior with this thread.

    My prefenter used to be Flixotide preventer, which I almost never used because it made me anxious and, by association, I suspected that the Ventolin might be increasing the anxiety so I was always very sparing with that. The result was that the slightest sign of a trigger made me really rough because I wasn't using a preventer and was wary of the effects of my reliever so I hardly used that eitherm which meant that when my asthma was difficult it was VERY difficult.

    Now that I am finally off the Flixotide and Ventolin I have gained confidence in my Symbicort and dutifully use it every morning, patting myself on the back for being a good girlie and keeping my level of preventer where it should be. The result has been that, although I still start to cough when a trigger is present, my symptoms quickly vanish when the trigger is removed.

    BUT, I caught a bit of a virus from the grandchlidren - nothing major, just a sore throat, headache and tiredness. My morning PF has dropped from 450 to 430, which is minor (best ever is 470 over Christmas. I'm still excited about that!), which isn't bad, but I've been ignoring the fact that I'm coughing all the time and have plenty of rubbish in my lungs because there has been so little change in my PF. Different medication, same mindset and, if I'm not careful, same outcome.

    So, thanks to you all for making me think. I am determined not to let this slight problem escalate until, yet again, I'm unable work. More Symbicort for me this evening!

  • Philomena: --- I had just thought that ANY singing --- Unfortunately not. Most people carry whatever speech habits they have into their singing. For example, someone who has a bad habit of talking in the throat (me) will, without training, often also sing in the throat.

    And the same goes for breathing. During a particularly bad period of this current exacerbation I would occasionally feel a tight sensation in my throat coupled with the sense that air couldn't move past the top of my breasts as if someone had spread a sheet of plastic right through me at that point. Obviously the throat isn't the lungs so it eventually caught my attention and put me into vocal research mode.

    After a bit of experimentation I figured out that I could completely eliminate both the tightness in the throat and the feeling of air not getting in by relaxing the upper chest muscles, but this had the effect of causing my sternum to retract (ouch). As near as I can figure out I was subconsciously trying to correct for an unfavorable pressure gradient in the thorax by recruiting an old bad vocal habit – using the larynx as a secondary air pump.

    Even good training doesn't always prevent interference from vocal problems. It just gives me some extra tools to problem solve and get things back on track.

    Standard instructions like 'sing with the diaphragm' can also be problematic if a teacher or therapist isn't on the look out for *how* you support with the diaphragm. Some (many?) people tend to clench at the throat and raise the larynx when they push with the abs and pelvic girdle. I presume that is why VCD is a common problem with certain athletes, e.g. rowers. Raising the larynx makes inhalation more difficult. It also makes relaxed but controlled exhalation more difficult as well. So in trying to solve the breathing problem with the diaphragm, they actually aggravate it!

    Also it is possible to provide too much support, not just too little. This may be what your physio is getting at when she/he suggested that you breathe too deep. (but you'll have to ask – everyone seems to have their own metaphors and terminology – definitely confusing!)

    You are very right that there is a big element of practice or training. When I've been a good little student, just my scales and exercises can take over an hour. Knowing the right way in one's head is not the same as developing the muscle memory that makes its use automatic. But there is another reason why training/practice is so important: there isn't “one right way”. Practice time is an opportunity to get in touch with one's body, learn what feels right, and play around with different muscles so one can get the right amount of power (not too much, not too little) with the minimum of stress, tension, and effort.

    If you are interested in more about over/under breathing from a singing perspective, there is a very nice essay on the web about breathing technique and singing by David Jones titled “Breath Management in Singing”. (hopefully that should be enough to google it).

  • Thanks for the explanation and the further info! I really would like to know more as so few people seem to know about both sides of things, and I'm very much aware of my lack of proper vocal training and how important correct breathing is for singing. Wondering if the 'singing for breathing' group at the hospital is worth trying out...

    The physio said the same about me knowing more or less what the idea was but it needing to become automatic; not sure what she means exactly about the deep breathing but it did surprise me given I appear to be terrible at doing it 'on demand' and am forever getting exasperated doctors saying, 'no, DEEP breath'. I am also terrible at lung function test/spiro technique (getting better with too much practice); do you find your vocal training helps you with those? I have no idea why I'm so bad at them.

  • I thought id add my own experiences as an amateur singer though with some training in choirs etc.

    Since my lungs got worse 6 years ago i find that becausr my lung capacity has dropped i relly a lot more on my larynx than i should or used too. Althoygh it takes me longer to get there after a while or warm up session things do improve. Depending on how im doung lung wise on a particular day it often leaves me not only breathless hut also with a sore and feeling of constriction in my throat.

    I am also a songwriter and singing has always been a way for me to decompress emotionally so its very difficult for me to hear that my voice is not what it was.

    But in 2010 after my 31st intubtion of wich 4 had been in one month my vocal cords completely paralysed and i could barely whisper. I was told at the time by ent cons that he did not expect me to recover a normal speaking voice.

    However it was through singing (at first very pathetic attempts) that i did recoer my voice to where i am today. A normal speech but very much diminished in singinh capacity.

    So truly practice makes perfect!

    Rose xx

  • Thank-you for sharing that, Rose. My voice has taken a real hit from all of this. I'm only just realizing how important it is to carry on (very gently) with practice even if it is only a few minutes a day to avoid stressing things too much.

    Also totally with you on the emotional impact.

    And very sorry to hear about the intubation accident. I'm glad you've had some recovery, but that must have been very hard.

  • bump.

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