Breathing problems "in my head" - any advice? - Asthma UK community forum

Hi everyone,

Just wanted to see if anyone has advice here as before when I've posted I got some pretty good advice and to be honest I'm out of ideas right now.

Was recently told I don't have asthma, having been told by GP 3 years ago that's what I have. It was a resp doctor who told me it wasn't asthma, after I got referred in there following a trip to A+E with "asthma attack" that didn't respond to prednisone after 1 week. In fairness my spirometry shows obstruction that isn't meeting criteria for asthma and my mannitol challenge was negative but showed evidence of hyperreactive airways and small airways disease.

Still using all my regular meds, still needing Ventolin daily. PF's barely drop (380 if I wake with shortness of breath in middle of night, 420 during day if short of breath. but if I feel well I hit 480-500). Today I've used Ventolin 30+ times, been using it 10+ times daily over last week. Have appt with GP Monday but trying to get through the weekend. I just dread going to the doctor because they don't seem to realise what I mean by shortness of breath (and I'm bad at standing up for myself or explaining how bad it gets at night too in fairness) as most times I've been I am breathing fine, just feel a bit tight when I'm there. And I've never wheezed. For the past 12 months I've used Ventolin nearly every single day but the doctors keep thinking it's a compliance issue with me not taking the preventer daily (which I do).

Resp doctor says the cough (which has been a constant companion for 4yrs) is due to post nasal drip and partly worsened by me thinking it's chronic, and the shortness of breath+ chest tightness + dull ache from breathing that I get is just a "subjective feeling I perceive" and there's no reason for it.

All I know is that the Ventolin does give me relief...but it's not lasting a few hours like it used to, now it's only lasting 1-2hrs at a time. Just wondering if anyone can suggest anything in terms of how to cut down on Ventolin use or get through the day without getting concerned that I feel I am fighting for breath all the time. The resp doctor suggested I exercise, which I do when I feel well, but honestly when I'm tight and feel like my breaths are insufficient it's the last thing I feel capable of. I try walking but that usually makes me feel worse, and certainly is worsening my coughing due to the cold weather at the moment.

Sorry for the long post and rant that got put into it...just a bit fed up and hate feeling like I should be able to just stop feeling caught for breath. If there's anyway to learn how to expand my lungs and exhale properly I'm all ears!

38 Replies

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endorphinaddict

in reply to hypercat54

4 months ago

Thank you. True, I am aware that 3-4 times a week is recommended but my GP is happy once I am at 3-4 a day...especially as now the resp doctors seem to have ruled out asthma. And I do think my GP is good, I probably just didn't push him for answers, which is on me.

I'm on a preventer - Flutiform which is LABA+ICS - and that works well a lot of the time. Will bring my peak flows from 400/430 on waking to 450/480 after 10mins of so so that's pretty good, and I feel that improvement. The GP hasn't really told me what I have and I guess I just want answers...or to figure out how to deal with this if it turns out that it is all in my head.

I guess my post last night was unnecessary, I was just tired from struggling to breathe and frustrated that it appears there is nothing physically wrong with my lungs and I've just wasted people's time and doctors resources over the last few years trying to figure out what's been going on. I guess that if I knew what it was I wouldn't get so bothered, but when it happens I'm fine the first day or two but then try to figure out why I can't stop it when there's nothing wrong and I can't talk to anyone in that state so ended up ranting on here and throwing out a plea in the hope someone had a suggestion.

And by the looks of it you all have a few suggestions that I need to follow up - so thank you!

in reply to Lori62

Hey, thanks for your responses.

Ventolin helps, it depends on the day. On my normal days I can use it - like 1-2 puffs - and then be fine either until that night or later that evening.

Some days I might need to use 5 puffs or so over the space of an hour and then I just feel relief and again it will work for a few hours, or on occassion until the next morning. There are days that I don't need to use the Ventolin but unfortunately they are few and far between.

Then I get weeks like this week where I can take 2 puffs, that will last 2-3hrs and will need to repeat that throughout the day, then as the week goes on it will worsen to a stage where I will have to do the 10 puffs in 10mins thing to get any sort of relief and that might last anywhere between 1-4hrs. It's very variable, I do keep track of it in terms of no. of puffs I take alongside my PF diary but it seems random these "exacerbations" of whatever it is. Seems this winter though that things were worse, and the Ventolin never quite got me through more than 5-6hrs at a time like it did last year. Might just be coincidence though.

A+E = accident and emergency. Sorry, should have said Emergency Dept.

X-rays were clear, had a few done over the years. There is only mild obstruction on spirometry and it's partially reversible so they originally put that down to "twitchy airways".

Mannitol is an inhaled sugar substance and used with pulmonary function tests. Usually people with asthma and hyperreactive airways will respond to mannitol by getting their symptoms of asthma and it induces a slight bronchospasm. They stop the test once your FEV1 drops 20% below baseline. It's a pretty accurate test for diagnosis of people with mild asthma or asthma to certain triggers that would normally have normal spirometry readings when they are well controlled or asymptomatic.

Thanks.

Yea I did actually. They did an inspiratory high-res CT back in December because the cough brings up mucous so they wanted to rule out bronchiectasis. That was normal - they told me it wasn't bronchiectasis at least and there were no other obstructions present.

In fairness to the resp dept, the first time I went there the doctor seemed to think there was something wrong but wasn't convinced about asthma (because my peak flows are too high) but they've ruled out a bunch of other respiratory diseases now as I know they tested for TB, bronchiectasis and IPF. Then I was sent for the spirometry and mannitol challenge as a result of spirometry not being completely reversible. But the last two times I went back the doctor wasn't convinced it was asthma and I just got the impression he felt I was exaggerating stuff and he was the one who said it was just a feeling I had and there was nothing physically to be found.

Itsmeithink

Do you have an oximeter, I bought one off of amazon. I was getting short of breath and my face was tingling, felt like I was suffocating. I had not long been discharged from hospital after pneumonia and as my chest X-ray was clear dr didn’t believe me and suggested I was hyperventilating. To prove him wrong I bought an oximeter and when I told him my oxygen levels were dropping to 91% he took me seriously and sent me for lung function tests. That gave a diagnosis of asthma and with the right dose of preventer inhaler solved my problem. They aren’t expensive to buy, and are not a diagnostic, but could give you some more evidence that there is a problem and get the dr to take you more seriously. The other suggestion I have is to try a different dose or type of preventer inhaler and see if that will calm your lungs down better.

in reply to Superzob

Sorry, I should have been more clear. My preventer is a LABA-ICS (Flutiform) that I take through a spacer.

I don't think they have it diagnosed as fixed small airways obstruction - least I haven't heard that term being used. They just said that even though my FEV1 was showing obstruction it wasn't below the 80% needed to diagnose asthma (was at 82% last time) but that my FEF25-75 which shows small airways was low. Hasn't been over 60% for last two years and fell to 43% with mannitol challenge but it is partially reversible with salbutamol, can't remember the figure though. They didn't seem too worried - just said it was something I had but as I'm a non-smoker and 25yrs that it's nothing major.

Thanks for the advice though, I'll see can I bring it up with my GP.

Can I ask what your symptoms are and how you got diagnosed - if you don't mind sharing that is?

Superzob

in reply to endorphinaddict

Certainly, anything to help. I had a string of incessant winter colds for 6 years after I retired, and was eventually given a peak flow test by my GP which was only 300 (rather than 500, which is what it should have been at my age and build); I was also getting occasional chest tightness in winter, which is indicative of someone below about 53% lung function (mine's about 50% without medication). The hospital spirometry and CT scan showed a combination of fixed airways obstruction (although, like you, I've never smoked) and about 20% asthma. So, with medication, I can increase my lung function to 60% and avoid most of the symptoms, but I do produce a lot of lung mucous without a cough (may be some element of nasal drip and GERD, though that's never been investigated). I use Symbicort, which is a combination preventer inhaler, very similar to Flutiform. I suppose if you're still getting problems then maybe a GP or consultant could advise an increase in dose or another inhaler - there seem to be plenty on the market.

in reply to Sparkywoo

Thanks. Only thing I take is Magnesium to try prevent cramps I get a swim training. Only been on those for the past year. I'll see can I notice any triggers but so far I haven't (not in terms of food at least).

Not sure it's a panic attack - was at the GP once when it was happening and they said it didn't look like a panic attack because I was calm enough except for struggling to breathe ... but I guess that's enough to cause anyone to get a bit anxious

But it might be, I spoke to a few classmates who I know have anxiety disorders and panic attacks and to me I don't have the (concious) worry and anxiety element but it's possible alright. I'll look into what you've suggested - willing to try anything that might help at this stage

Lysistrata

Hi, you sound a lot like me a few years ago! I find some drs do not really understand or even try to understand anything out of the ordinary and will often jump to 'in your head' or 'you're just unfit' rather too quickly. I've had both of those way too much and I definitely have asthma though admittedly at the start it wss rather like yours and even I wasn't sure what was up though I had mild asthma as a child and this (after swine flu) felt similar. My inability to walk at more than a snail's pace, shortness of breath and fast HR which went right up to 150ish with mild exertion was all put down to anxiety. I am not the fittest person ever but like you my ability to.exercise (by which I mean walk normally these days) fluctuates weekly so while Indo my best it isn't always feasible! As a swimmer I doubt you are so unfit that you get out of breath that easily just from exertion without there being something else - did the resp dr register that?

My first challenge test was negative but with a strong reversibility but more recently I had strong positive- they often don't seem to give good instructions on withholding medication as another pt at my first one said she had a negative one too and had confirmed se ere brittle asthma. I have had very low FEF25-75 prompting a CT scan which was apparently normal. Since then my PF is often good or doesn't decline and my best is well above normal but my FEV1 has gone down steadily and I can now push it up only with a lot of effort and Ventolin. Spirometry csn easily be normal with asthma if you're in a good period. I often don't have a ratio technically low enough for asthma because both numbers are low and in general I have some odd patterns partly because I find spirometry hard to do especially when more breathless.

To me the fact that your Ventolin is working then wearing off and that you had some reversibility does suggest there might be some asthma element. The anxiety stuff is a favourite with some drs but I find even if I am stressed about something else it doesn't affect my breathing (stomach yes). I also stay calm with attacks. However it is often very hard to explain you aren't anxious especially as dealing with drs who don't listen makes me.anxious!

I would definitely agree with ringing the nurses as I think just fobbing you off with the anxiety/unfitness thing is not at all helpful and yiu need someone to look into this properly.

Sorry for rambling on about myself but hope it helps as I do feel I have had similar frustrating experiences and it is very disheartening to be told it's all in your head, especially when it isn't. I don't buy that?young swimmers with no feelings of anxiety can just get that breathless and it's not considered worth looking into any more.

in reply to Lysistrata

I don't have any words to explain to you how much your post has helped - honestly, thank you so much!! And you were a sanity-saver last time I posted too.

Regarding the swimming the resp doc kind of made the assumption that I didn't do much exercise so I didn't really get a chance to explain I was on my college swim team (yea, I know I should have! I just left it as "I do a bit of sports" instead :/ ).

I remember you warned me about the challenge tests. I came off the preventor for 4 weeks, and the Ventolin was 30hrs or something like that. Luckily I wasn't too bad off the preventer, and didn't have any breathing issues the day I did the test. Even doing the test aside from excessive coughing my lungs felt fine...so they think that the cough is purely post-nasal drip or a mix of that and hyperreactivity (least I have a diagnosis and can treat that! ).

Honestly, thanks a million for taking the time to write all this down and explain your story to me. It does sound quite similar alright.

And, probably in a weird way, makes me feel like I shouldn't accept the whole "it's in your head" thing quite yet - that maybe I just need to go back to the GP and explain it all to him again and see where to go now. Rather than just keep taking the meds as I am and hoping for the best. I guess I need to improve how I communicate and see if I can push for answers or at least better symptom control.

I'm going to see will he prescribe me montelukast Monday - last time I got it for a month to try and saw an improvement (symptom wise) so I'll see can I get that again and try again.

Again, really appreciate your story and help - thanks!! Gives me a bit of hope that it isn't all in my head and that there is a chance that it will improve

I'm so glad I could help! In your position a few years ago, this forum was so helpful. I saw what you said above about feeling bad that you're not as bad as others on here - maybe not but it's really hard being in limbo and being told you're a hypochondriac, it's just your breathing, you're not trying hard enough etc and not knowing what's going on or how you can fix it, especially if you are used to being healthy and sporty. I've never been sporty, and before all this I didn't get anything like the shortness of breath even as an overweight teenager who preferred reading.

The worst experiences I have had are not the severe attacks in resus, they are being told that I am not better because I haven't tried hard enough (at least two cons - they kept sending me to physio which fixed some bad habits but didn't really do much, then blamed me for not getting better. Literally told me I should have tried harder and then gave up trying to help. Didn't even bother to ask the physio who could have told them I was doing everything they asked). I've also been told I am neurotic, I need to believe I am not ill, I shouldn't take my inhaler unless my peak flow drops (my peak flow isn't even remotely useful as a tool except in the way it responds to Ventolin). And interrogated every time by cons after I went to hospital about why I went, why was I going so much, why did I go when my peak flow was above 50% etc. Sorry...that wasn't meant to be a pity party but just to illustrate that all this is really hard, and it does mess with your head - I can simultaneously think someone is giving me crap advice and rationally not agree, but still take it to heart.

So honestly I think for me it was harder when I was like you and doubting myself all the time and actually easier when I had it confirmed as severe asthma. Obviously I hope you actually find a solution without that happening! But just wanted you to know you needn't feel guilty. (Having said that I now feel guilty because I haven't been in ITU etc or had that level of attack and I am sure it's horrendous, and I can still work etc.)

I definitely think that you should talk it through with the nurses here (amazing sanity savers) and go back to the GP - like someone else said, try another one if you don't get anywhere at first. It can take a while to get on the right meds but even with more severe asthma they have helped me with every day life and I don't crawl around like I used to unable to do anything. I hope you get the montelukast. If it helps, see if you can focus on anything concrete eg you were able to do more exercise, walk faster, less night waking etc on it than off it. Write it down even just for your own reference. And maybe emphasise the Ventolin working then wearing off - very different from not working at all. Also try to note any triggers. I began to notice on here that what I thought were odd triggers like paint and lavender were actually reasonably common, and that may help if you notice that eg when there is a thunderstorm you're tight chested.

It took me a while to find the right drs too and my advice there is not to let them get into your head if they're inclined to be dismissive. If it's not working out, don't assume it's all you. Asthma is one name for an incredibly varied set of symptoms and underlying causes and a lot of drs just aren't familiar with all the variations, especially when their main interest isn't asthma. Asthma is also quite slippery - it doesn't seem to like being observed sometimes! Not saying that's definitely what you have as I can't, but I agree that persistence is worth it, and just saying that I spent a looonnngg time with it is-it isn't etc because it was hard to pin down. I was also tested for all the other possibilities including cardiac - though the treadmill test was a bust which I could have told them, because I was too breathless for more than 3 mins of it. I was 25 and could not manage a test which they do on unfit middle-aged people with heart problems so yes I was sceptical it was unfitness, though my heart was fine. Asthma makes it excited lol (rate went up without help from Ventolin).

On the anxiety - I'm not at all an expert but I'm honestly a bit sceptical that you could be so anxious that your breathing is massively affected without you actually having the emotional side at all and as you say feeling calm. You could try noticing if the breathing is at all linked to stress, though this is complicated as stress can also trigger asthma in some people. Except me, where it actually helps my lungs! As I said I am also very calm in attacks and my breathing has never been accompanied by anxiety. I also have friends who have both severe anxiety/panic attacks and severe asthma and are definite that they feel very different and are often not linked to one another in triggers etc.

Sorry, this is hugely long, but hope it's helpful. Happy to PM etc if you ever feel it would be useful.

Offcut

If you are using Ventolin 30+ times a day then I would of thought you would be having Ventolin twitches at night at the very least? If this is not the case it could be you are not using the inhaler correctly I would suggest a Spacer? You can get it on prescription from GP.

Have you had a Spirometry test? Not the peak flow tube? to see if the problem is obstruction or Restrictive? Restrictive tends to be not so Ventolin friendly. Restrictive will also give a higher peak-flow reading over obstructive. Took my GP years to except there are different lung conditions with different results. It needs a lot more looking into. If you feel it is hard to explain what you would like to be done write it down and give it to the GP stating you find it hard to ask for help?

Be Well

in reply to Offcut

Thanks!

Yea, I use a spacer (well only got one about a month ago so for the last month I have been before that I wasn't).

I get hand tremors with the Ventolin, used to get heart palpitations that would last for hours with it too but they have slowly died off over the last year...thankfully! I just feel a bit jittery at times with it, or don't feel tired enough to sleep at night when I take but nothing too bad. I used to react more to it, but now it seems a bit sporadic whether or not I'll react.

Yea, I did spirometry a few times now. FEV1 varies between 120%+ when well to 95% on meds but still symptomatic and 82% recently when I'd to come off meds for the mannitol challenge test. It's an obstructive pattern, but a mild one. When I last went for a few weeks being well controlled I hit a PF of 520 so I still consider that my best, but am aware that I shouldn't really be getting these symptoms so much with a peak flow that's around 80% of best.

Paradigm

I was doing something similar and my PEF is always fine at the doctors (I refuse to go to A&E, though I definitely would not recommend this life choice.)

I was also told a very similar thing (viral, anxiety) and told to reduce my ventolin because I was overusing it, after visiting out of hours because the prednisolone hadn't taken effect. I've never wheezed either.

Less than two weeks later, after following that advice I had an attack but I didn't record my PEF until the next day . Since then, I have reduced my ventolin (though my actual GP surgery say that PEF and symptoms don't always match).

I have since taken a more... median approach - I no longer take ventolin very often unless I'm amber (except when I feel really uncomfortable because I'm not a masochist). Sometimes, my PEF stays at the bottom of green with symptoms but doesn't drop further, other times it does drop to amber without the ventolin. This quite clearly shows that it's not just me, for example if I dip or if there's a near/over 20% daily variation.

For me, I found that the side effects from the ventolin were worse than the discomfort since I was needing to take it so often (or rather, the unfortunate experience of both together because it kept wearing off). It can be frustrating as my symptoms do not always match my PEF (in fact, I predictably have symptoms in the bottom two green and sometimes completely out of whack), but other times it definitely does drop which suggests that I'm not imagining it and either rises or doesn't with ventolin.

I also found that prior to using a spacer, I was in fact shooting much of my dose on the back of my throat, instead of it getting to my lungs.

Today, I went along and got steroids - though I usually should have a few more times (I get nervous about being 'fine' when I get there), so I'm not really suggesting myself as a bastion of patient compliance. My actual doctor was talking about how asthma doesn't always reflect PEF and perception of symptoms is more important - so I'm considering seeing if my PEF does rise when it's "fine" because I'm beginning to suspect my actual best is higher than my best.

Out of interest, are you/your doctors using 500 as your best? Because I would have thought 380 was amber.

Best of luck!

Edited again: I also get symptoms with my PEF just into amber. I am not sure why.

in reply to Paradigm

Haha, well that thing about refusing to go A+E or the GP when you don't feel well?...been there, done that. Had friends and family get annoyed at me for not wanting to go to A+E (with normal sats and a PF of 450).

Personally I use 520 as my best as that's what I have hit. But I find once I am below 450/460 I get symptoms. 380-400 is barely into amber alright the way I see it. But by that stage I can't really talk, at least not in full sentences.

But the resp clinic I was in calculated my best as 440 so use 370 as cut off. The time the GP sent me into A+E I had been 420 all week and coming up to 450 with a neb but was still visibly struggling to breathe so A+E didn't cause any problems when I arrived and got me on a neb and gave me hydrocortisone. But aside from that other times when I haven't felt well I'll just try and sit through it. Unless I'm seriously struggling and Ventolin isn't really working at all I'll avoid the GP (esp as last few times I've gone they say it's viral and won't give steroids unless my mucous is green or I've been struggling a week).

Hope that the steroids help you and you get to feel better soon!

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