Confused and looking for advice please :)

So this question is mainly aimed at people who have a mild form of asthma I guess.

And I know that I've asked a few questions before and gotten advice based on it but just wondering if someone has been in this situation or what I could do. Thanks in advance. Trying to keep this short...and failing

I was initially labelled as having asthma 4 years ago when I presented to my GP with a constant cough, for over a year, that was worse at nights and in the morning and definitely worse after exercise (I would, and still do have a 20 min period of paroxysms of coughing).

I had mild exertional shortness of breath at the time too that I failed to recognise until I started on Ventolin (failed to recognise because I thought the SOB was me loosing fitness thanks to bullying that was going on, despite doing nothing differently...hadn't thought that was relevant until was at the GP yesterday). At the time I would get mildly short of breath around 1-2am as well some nights a week but as it was exam time when this started, I believed people when I was told it was panic attacks despite never having had them before, and my only symptom being a bit of breathing issues.

My GP started me on Ventolin and beclomethasone, the coughing persisted so I was titrated up to Symbicort, avamys and cetirizine over a period of a few months. Within 3 weeks of starting on Symbicort my 10km running time improved 10mins and I was able to swim the 400m sets at swim team like the rest of my teamates, no longer needing to stop. This was in the middle of winter in Eastern Europe, where I was able to cycle to college in temps of -10 without much issue. It was great!

The coughing however persisted and over the following 2-3 years I was requiring Ventolin daily, and the breathing issues worsened. In summer I am pretty good but in winter I hit episodes every few weeks where I require 10 puffs of my inhaler several times a day, and that period lasts a few days. I struggle to walk or do stuff at home without getting short of breath, and running or swimming is non-existent for the week that this happens.

Last winter I was given pred for the first time, and it worked for about 3 days before I went back to the GP hoping for a nebuliser but as I couldn't talk because I was so SOB, and my heart rate was 160 I was sent to A+E and referred to respiratory subsequently. I was started on montelukast and changed to fostair and though the coughing has definitely subsided it's still present.

I just had the best summer in over 5 years with coughing mostly when laughing, exercise and at night. Ventolin requirements were only a few times a week and periods of breathlessness affecting my regular activities were a few times a month. I moved to the UK for work in August.

Three weeks ago I got bronchitis (shocker! ) and have been sent home from work 3 times since, and given nebs at work on all 3 occassions. I was given pred 2 weeks ago which worked somewhat but as I went through 2 Ventolin inhalers in 2 weeks with it, the GP wouldn't re-issue the Ventolin without me talking to him, fair enough. As my sats have always been fine and peak flows never drop and spirometry shows fixed small airways obstruction and mild obstruction and CT scan was fine he is questioning my diagnosis of asthma.

Which to be honest I completely understand. He is wondering if this is all anxiety driven because of the way I am describing my shortness of breath...but my understanding is that with anxiety you get other symptoms, or are somewhat aware of being anxious or there are triggers? I could be wrong though.

But he said that he can't give me any meds for anxiety as that would either kill me or land me in hospital if it turns out I do have asthma

He didn't seem to think that me stopping all my meds was a good idea either, when I suggested that.

I am just wondering if someone has mild asthma that doesn't wheeze or has anxiety how you managed to figure out which one it is? I am fully aware that there could be a component of both at play here, and if it is all anxiety that's fine (I no longer have to take inhalers everywhere).

I guess that right now neither asthma nor anxiety fully make sense. I get that my peak flow is always fine so that it doesn't make sense it's asthma, but why then do I notice a difference when I take ventolin before exercise, and what's with the constant cough and exertional shortness of breath? And is it possible that anxiety can be so subtle that I'm not aware I've had it for 5 years and it's sole manifestation is shortness of breath with exercise in the summer, and daily during the winter?

Would appreciate any input/insight you may have, sorry for the long ramble. I hope it hasn't come across as an inappropriate post and I definitely don't want it to be that I am shutting out my GPs' advice - I am just very confused and frustrated at not knowing one way or another (and have managed to confuse my really nice GP who literally told me he didn't know what to do with me other than increase my Fostair inhaler and to ask me to try persist without Ventolin as much as I can and see what happens).

I am hoping to go back to the GP at some stage and explain all this to him again when I get a chance...

[EmmaF91 Community Ambassador]

Hi

Sorry to hear you’re in the middle of a very confusing time!

The easiest way to ‘tell’ if it’s more asthma or more anixety is to work out which way you struggle to breath. If you can’t breath in it’s more likely to me anxiety, if you can’t breath out it’s more likely to be asthma (like breathing through a straw)! Typically anxiety won’t wake you in the mild of the night SoB and won’t respond to salbutamol.

If your spirometry is showing something happening in your small airways then it’s unlikely to just the anxiety (which usually doesn’t show much of anything), it could be that there’s something different going on if the reversibility test came back negative, however spirometry/LFTs can be wrong on this front. Did you have to stop your meds for x amount of time prior? Were you symptomatic when doing it? If you didn’t stop your meds, or weren’t symptomatic then it’s not giving the full picture so may be worth asking for a ‘redo’ at a suitable time. This has happened to me twice! I had LFTs done about a month apart - the first suggested no asthma at all, the second showed severe asthma - first one I was asymptomatic the second one I definitely wasn’t 😅.

You can have CVA which doesn’t wheeze, but you can also have both asthma and anxiety! You can also be asthmatic and have a PF that rarely drops (there are a few on here... usually people who play wind instruments or people who do high intensity sport cause you learn how to ‘cheat’ the meter 😂). You can also have asthma that doesn’t respond to prednisolone - it’s definitely not a clear cut disease so worth asking for more tests/repeats cause you don’t want to be on the wrong treatment, or referral if you can’t get to the bottom of it with your GP!

Sorry to not be more helpful, but good luck with the diagnostic process and I hope you get the answers you need soon x

[Hidden in reply to EmmaF91]

Hi,

Thanks so much for taking the time to reply! Sorry for my long ramble, I just finished a course of pred a few days ago so not sure if that's too blame or something else but rather emotional the last few days...which definitely isn't helping anything!!

When I did the first spirometry (no reversibility checked, not off meds) I was symptomatic but the obstruction didn't meet criteria for asthma diagnosis.

Since then I have had reversibility testing and a mannitol challenge test and both times managed off the meds as was instructed but wasn't symptomatic at all. Even with the mannitol challenge test, they did the full test and gave me a neb after it but I had no symptoms at all during it. Though the test showed I had some reaction to both the mannitol and reversibility with the neb (in larger airways, smaller airways did react but they weren't too interested in that one) but it didn't meet criteria for diagnosis of asthma and the resp physiologist who did the test hypothesised that my airways are a bit hyperreactive and that as a result when I get viruses my airways are inflammed and somewhat narrowed and then I think they are bronchospasming when they aren't.

I think initially my GP back home thought it was CVA until I started getting short of breath...I don't know. I just feel like I've wasted people's time and am a fraud, and that maybe I can control all this with my mind or something but it's frustrating me it's been 5 years like that and no concrete answers - sometimes I get told it's definitely asthma just peak flow doesn't drop and other times get told it's more like anxiety but it's weird that I believe I don't get other symptoms and respond to salbutamol.

And I know it really shouldn't bother me because it's a bit of a hindrance but I'm not anywhere near as affected as people with severe asthma are so I shouldn't be complaining.

Anyway, thanks for listening to my ranting and responding. I really appreciate it!

[Lysistrata Administrator Community Ambassador in reply to Hidden]

What were your instructions before the test? My first challenge test (histamine) was negative and I don't think I stopped things long enough - asthma was better then than now but I did also have reversibility after the neb. Second (mannitol) was strongly positive as I did my own research - montelukast especially can affect that and needs to be stopped longer than other things. I was just told vaguely to stop things the day before - still unimpressed by the vagueness and these were both specialist hospitals!

Do you have a figure for FEF25-75? That's the middle portion of the blow and I have read it can show smaller airway obstruction and drop before other measures like FEV1 eg an asthmatic can have 'normal' basic spirometry but that will drop. I know mine did much earlier than other measures. VCD could be there but it wouldn't make your small airways react on a test - wonder if they could follow up on that.

I will also say that as an asthma freak, my spirometry has always been a bit weird and my FEV1/FVC ratio does not behave as it should - currently both are low. A former cons focused entirely on that and kept saying I had no obstruction and was fine. I later saw the actual numbers and the asthma nurse pointed out that both my FEV1 and FVC had been going steadily downwards for a while! I realise this is not typical of asthma but it was not really fine! Cons blamed my technique and the nurse doing the test - ok I do struggle especially when breathing worse, but there was a trend.

Re your peak flow - do you mean it doesn't vary much and doesn't drop from your usual? Or that you've been told it's 'fine' because it's normal for your age/gender/height? I have a memory of you saying somewhere that you are normally very fit and sporty, which tends to push up peak flow and spirometry. If your real best is well above your predicted, they might be saying that yours is ok when in fact you could do better. Mine is well above the predicted (playing the oboe/singing in my case) and doesn't always drop that much. It will drop but not to the level expected (ie severe attack - still above 50%) but for me the main warning is when it stops being reversible and responding to reliever.

Hope this is vaguely useful - I really do hope you get somewhere as it sounds like there is something going on even if not asthma, and it is not just stress and anxiety even if that isn't helping. Maybe talk to the AUK or British Lung Foundation helplines and they could advise you on next steps? All this is not going to help your mood and stress, but doesn't mean they are the main cause.

[Shellc]

Look up exercise induced laryngeal obstruction , I follow a consultant on Twitter from Brompton who specialises in this ? He said a lot of people get diagnosed with asthma and in fact it’s an obstruction

[Chip_y2kuk]

I was asthmatic as a kid and my story sounds a bit like yours (it went away for 7 understand it me hard 3-4 years ago) ... I very rarely wheeze and have what I would say is difficult to control asthma

What I would say is different GP's have different levels of knowledge of asthma (and that variance can be quite shocking)

A lot of GPS are looking for textbook asthma

1. A wheeze

2. A morning And night time cough

Etc

Not everyone is textbook... when my asthma came back they told me I might have a problem with my heart every test for heart problems later... I have a slight defect on an ecg that's apparently so common millions of people have it and don't know, so it's not that.

So it might be your lungs after all (lots and lots of tests later).... we think your asthma might be back but it certainly isn't "textbook" oh and by the way your allergic to dust, pollen and probably some other stuff (high Ige count) ... here's an Inhaler

I now take

Spiromax (cheaper version of symbicort)

Easy breathe powder salbutamol......after being told by a gp that ventolin was all there was and I couldn't have anything else and then a quick test by a really good asthma nurse and apparently I breathe in too hard for ventolin making it practical useless (most of it hits the back of your throat) but am perfect for powder as it requires a much harder in breathe

Montelukast

Spiriva respimat

Fexofenadine (prescription antihistamaine)

[Kiiam]

Hi, firstly preds will affect you emotionally it’s a roller coaster, so don’t apologise : it seems the more the medical profession learn about asthma the less they know ..... and as a sufferer frustration and lack of understanding seem to be part of the illness process : message here is don’t give up ...... be persistent ...... anxiety and asthma are often interlinked, I’ve have been reading really interesting research on the function of the adrenal gland, production of cortisol , and its affect on stress and anxiety and link to lung function : it seems that so much in regard to asthma is interlinked with other things, and the medical profession are starting to catch up , with its complexity . I understand completely your feelings of ‘am I a Fraud’ when your ( scores) /numbers don’t add up to what the doctors think they should ..... it’s taken me ages to decide I come first, and if I’m concerned with my asthma then to the doctors I go, because asthma can become serious and fatal quite quickly ........ what they think is their thoughts, I can only take care of me to the best of my ability, and if the GP doesn’t know , then I persist until I find a ‘doc that does’ or who will help xxxxx I am a a specialist centre now, and the do take s more holistic overview ...... which really helps ❤️❤️ take good care of you ❤️

[Silentreader]

Hallo endorphinaddict,

I have asthma a bit like you describe. When feeling stress I cough and it is worse in winter weather. In fact temperature changes from inside to outside. I cough more at night. Two years ago I went back to England for a holiday of a week. We went to Norfolk by the sea and I had nothing. For the first time in four years. So sea air is definitely good for my condition.

I am 69 now and have never smoked but grew up in a household of heavy smokers. Both parents and a gran. My asthma (which I did not recognize as such) started four years ago after a year of one cold infection after the other summer and winter. My daughter and her husband are doctors and often brought it home from the hospital. And then there is Robin our little grandchild. She was a test-tube baby and is very slight and small for her age and gets every infection going. We look after her often.

My doctor said the trigger was all the colds and through this my immune system not very good, but also worry and stress. I had a lot of worry over the past years. My husbands heart attacks and operation. My daughter got meningitis with complications and brain injury but is recovering. She has since divorced her husband and that was also a horrible period and I worry over my other daughter for reasons I would rather not disclose here.

My coughing is so bad that I cannot sleep through and often wake up coughing. I have been told that stress is a big factor in all this too. At the moment I do not take anything with cortisone. I take Salbutamol every four hours but think it is not enough and have an appointment beginning of January. I am English but have lived here in Germany for 49 years. Went to work in Berlin for the French Consul end of the sixties and met my husband. My problem is also that a lot of the medication on here has a different name in this country so it is hard for me to know what medication is best for me. I did try one and had a lot of side effects. Forget the name at the moment but it was something with a kind of powder. I will look for it and add the name here later. My daughter is a Psychiatrist so does not know all that much about Asthma and has since met someone else and moved to live in France. We have relatives there from my mother's side. She just told me to go back to my doctor but I have the impression with him that he just prescribes something and I am kind of in and out of there. He seems disinterested.

Someone told me the difficulty with Asthma is finding the right medication for your individual case. Does that mean it is trial and error?

Anyway - you sound like a young person and I hope things work out for you. Your doctor does not sound all that understanding either. Some of them aren't as I have found out through knowing a lot of them personally through my children and having them in the family. The godmother of Robin is also a doctor but specialized in caring for children. She lives in what was East Germany now and we hardly see her. It is not easy knowing what direction to take with this disease.

Nica

[su-mo in reply to Silentreader]

I was advised by a German doctor that probiotics plus proteolytic enzymes would be good supplements. After being on 7 different meds I am now free from asthma after 45 years diagnosed chronic asthmatic.

[Hidden]

HI, I have mild asthma which is always well controlled, I used to cycle 100K a week, do gym work and play badminton competitively. I had EIA but it was controllable.

Then in april I had bad tree pollen hay fever (which never causes my asthma) but did seem to this time, I started my asthma meds and was on the max dose, then I was given Pred, none of it really helped.

After consistently blowing good PFs my GP said he thought this wasnt asthma, I was shocked I have been an asthmatic my whole life but I realised he was right, I tapered of my meds and it made no difference to my SOB.

The best fit for my SOB is silent reflux known as Laryngopharyngeal Reflux or extraesophageal reflux, there are many symptoms to LPR but a persistent cough is a big one, most sufferers dont have heart burn but it is a possible symptom, look it up and check the symptoms.

Vocal chord dysfunction, VCD, is another possibility and is a close match to your symptoms.

[gandac]

I am reading this with interest as, at one point, when I needed to be in hospital overnight, I was told my asthma was due to anxiety. Although, 12 hours later I was told it was dysfunctional breathing. It could be both! And asthma too!

[Lysistrata Administrator Community Ambassador in reply to gandac]

I got told that when I had needed a whole load of treatment *for an asthma attack*. It was utter c*** in this case - I had an asthma attack, the treatment made me better, they just couldn't handle the fact I didn't wheeze. I know it was that because the consultant basically told me it was the lack of wheeze and the fact my peak flow supposedly hadn't dropped - it had and took a while to respond to treatment, but they didn't listen to me telling them my best was much higher than predicted.

So while I'm aware that stress etc can make asthma worse and asthmatics often have dysfunctional breathing, I also know that some drs just use it as a cop-out when they don't really understand that asthma presentations vary. (I did have mild issues with dysfunctional breathing which were fixed by physio, but would never mistake them for something needing A&E. I struggled moving from the bed as too SOB.)

[ChrissieMons]

The idea that you can't have any medication for anxiety if you have asthma is just plain silly. It is well known that anxiety can bring on an asthma attack, even if you are otherwise fit, which you certainly seem to be! You don't need to have any other symptoms as just coping with trying to breathe is quite enough. A ventolin inhaler a week is going to give you the jitters, which might make you even more agitated. Anxiety is a very subtle thing. Many people will not recognise that they are depressed, or anxious or have any mental health issue at all until their physical health breaks down. I suggest you take some time off and see a psychotherapist - a fully qualified person - and talk about your life until you find out what is bugging you deep down. Therapy isn't easy, and some can't hack it at all, but it might change your life - and your lungs - for the better.

[hypercat54]

Hi I was diagnosed with mild asthma many year before I got copd and always found that stress and anxiety would bring on major coughing fits. It would get really embarrassing at work sometimes.

I can't add to the medical knowledge already given but another couple of triggers causing coughing are 1. dust mites. These make me cough so it's a good idea to wash all your bedding, towels, and night wear at 60 degrees in order to kill them.

2. One of my sisters (no lung problems) had a bad cough which lasted for years. No doctor could find any cause for it. My sister wondered if it could be dairy related as intolerance is quite common. She cut out all dairy foods then reintroduced them one by one. She found she was intolerant to cows milk and ice cream. When she stopped using them her cough stopped completely and permanently. She has also cut down on dairy generally and drinks more fluids to thin it down. x

[IChoose]

We seem to have some similarities. I take Mucinex 1200, theophylline 100, duoneb, qvar 80 and singulair. I have had periods of remission followed by viral infection that seems to cause some real and seemingly permanent changes. Asthma is never all in your head but stress of course can make it worse. Stress is a part of life so cope as best you can but treat the asthma as it is.

[Hidden]

Wow, thanks so much for all your comment everyone

Sorry I haven't replied to them yet - been working nights over this weekend so just hadn't logged on here when I was home until just now.

I really appreciate the comments and help.