Who thinks there should me more research done in this area?
Who thinks that more doctors and medical professional people should be aware that some asthmatics do not wheeze?
Has any one had an experience where they have told they cannot be asthmatic or having an asthma attack because they dont wheeze?
Has any one gone to a and e or called an ambulance or rang Gp with asthma attack been told no wheeze and then a few hours later ended up in hospital really ill?
What do people think of this topic having more research done in to it?
Does any one agree with me that more people need to know not all asthmatics wheeze when having an attack?
Any one any ideas of how we can get it out into medical world that we do have asthma but we do not wheeze?
I personally do not wheeze i have very rarely wheezed the only time was just before going unconious so i was extremely ill by that point.
I cough and cough and cough, get short of breath,a tight chest and produce lots of mucus.
Please reply folks on your thoughts. Thanks
(please dont take offense any medical people who do know some asthmatics dont wheeze but i feel it is time more medical and emergency people are aware and would like ways we can do this together.)
93 Replies
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Right on!
I'm totally with you on this one.
I have been made to feel like a fraud on some occasions and also been treated twice in THE most offhand and abrupt manner by staff disbelieving an asthma attack as I wasn't wheezing...right up till they actually bothered to DO my O2 sats.
I know not all medical staff struggle with this but too many do and it's really unpleasant and humiliating to be on the patients end of it, not only that but it's downright scary when people are failing to take seriously something which you know is about to go badly wrong.
Who would we go about lobbying to try and get some research done on how many asthmatics actually don't wheeze?
Fee
No wheeze
I can't thank you enough for raising this, the only time I wheeze is when I have serious infections. The number of times I've been made to feel a fraud because all I'm doing is coughing and getting out of breath is too numerouse to count. I didn't know you didn't have to wheeze to have asthma. A bad cough that intially work me at night was the first symptom that I was developing asthma. I was lucky I was at uni and the GP tried me on asthma meds on a trial basis to see if it helped which it did. I was also lucky in that they looked into my family history and saw their was a long long history of hayfever, ecezma and asthma which apparantly are very common together. After speaking to others in my family most of us tend to cough and never wheeze.
I'm having trouble now as I've developed breathing pattern problems because I've learnt to surpress the cough (mainly my body saying this hurts too much!) so I'm having numerous issues as they can't tell how bad my asthma actually is now as peak flow readings and lung function tests are useless. I have to go off how I feel so don't even have an action plan. This has all been diagnosed by NWLC which is great if I have an attack near Manchester.
This is all fine whilst I'm well but you try going to the local A&E and explaining it (when your struggling to breath & talk together) and the doctors insist of taking peak flow readings and following their protocols. I've lost count the number of times I've been told I'm fine and my husband has been told to take me home and just monitor the situation especially as I use a nebuliser at home and my sats don't drop till the last minute by which time I am in real need of help.
Its a case of being made to feel a fraud & yet most of the time its an indicator that something is developing. No one in their right mind would go to A&E and spend alot of time there unless they knew something was wrong. I now no longer bother going to A&E and have to be on my knees before I'll go in because the added stress of trying to explain it all just makes it worse. Its scary as one of these days I might not be so lucky. I refuse to go to a certain hospital because I've found even some respiratory consultants there that think no wheeze means its not asthma and just someone who is fat and unfit. (5 years on constant high dose steroids hasn't helped this but most of the time this isn't even taken into account)
I think it was Plumie before who said asthma should be classed as a syndrome. Would certainly make my life easier, bit like when pmt was relabelled pms.
Apologies for the long rant, currently typing whilst coughing but thanking the internet that at last I know there are other people like me out there & I'm not a freak.
Maybe we should campaign for AUK to fund reasearch into this topic as it certainly seems to affect more people than I realised and if people knew that you don't have to wheeze to have asthma might even help to get diagnosed sooner. Coughing can be terrible and I even managed to crack a rib and damage joints in my back trying to get my breath.
Take care and thank you for starting this topic which I think you can gather I feel very strongly about.
Rabbit
I am the same... I have a wheeze when I am having an attack but my peak flow isnt usually much of a drop.
Normally I dont have a wheeze and my peak flow although is like a rollarcoaster is ok. My consultant was questioning whether I have asthma as I dont have a wheeze normally. My SATS are always OK
I once called an ambulance as I was having an attack my SATS were ok and there was no wheeze. The crew didnt know me but put it down to having a panic attack. Within an hour I was on the floor unable to breath and being rushed into hospital having a sever attack!
I agree the amount of times ive been in a and e and been told its a panic attack as i dont wheeze!
;0)
Any more people like this? Or any more thoughts on this topic?
never had a wheeze, and not everyone will get a cough or the tight chest, they are possible symptoms, not must have's.
Who should we talk to?
This is a great thread - does anyone know if there is someone we could talk to at AUK or other body about possible information dissemination to professionals or doing some research on this topic?
Fee
Hello all.first post so apologies if not right.My 17 yr old has never wheezed.This yr she has been really ill and I've had a junior doc in A&E look at me as if I was stupid and say ""Asthma means wheezing ,Mum!"".Luckily our childrens consultant has been great.Now we are to transfer to adult services which I'm dreading.A&E nurses are great but hate being told the consultant said no PF as it brings on attacks.She just goes more and more tired,then tight chest then cant breathe.She does have physio every 3 wks for Asthmatic hyperventilation but that is a symptom not a cause according to the consultant.
Ambulance men are great too.When I say brittle asthmatic they just accept the protocol letter and go straiught to A&E.
More research is needed.URGENTLY.The lack of medical staff knowledge about nonwheezers is frightening and DANGEROUS.
I agree there should definately be something done about this, I have no wheeze just a cough, breathlessness and a tight chest, but because they can't hear you wheeze they say that you are fine. I've had people tell me it's just a panic attack but I've had panic attacks and I know the difference between a panic attack and an asthma attack. Even my mum can't believe how bad I feel because she expects me to wheeze. Anything we can do to highlight this fact would be great, I wouldn't know where to start though!
Helen
There's a brief explanation by the reputable US based Mayo Clinic of why it's possible to have asthma without wheeze - mayoclinic.com/health/asthm... 9 (I've put a space between final two digits, remove if pasting into browser.
thank you for that link Claire OB very interesting, so if it is possible then why does no one know about it? Or very few people unless they are specialist in the area?
Me too!!! Had several GPs mention they're not sure it's asthma (only alternatives given are a split diaphragm or upper airway problem but no further mention/follow-up). Not been really ill but am at top level medication GPs can manage so hope the most most recent tweaks help. The lack of wheeze defo needs more work
I'm also a non-wheezer and have had problems with health professionals because of it. I've been to A+E once where I was told to stop coughing, given some codeine and sent back to the summer school i was on. I ended up back in A+E the next day and was admitted, although I didn't end up staying. My old GP was dismissive and refused to step up my medication on account of my not wheezing- I changed GPs, was referred to a consultant who was extremely dismissive because I didn't wheeze and since then I've been managed by my GP.
There have been some very good health professionals I've come across. I had 1 A+E trip since,which although there being a fair bit of confusion on the paramedic's and doctors' part that I wasn't wheezing I was actually treated as genuine and not made to feel like an attention seeker. I briefly saw another doctor before she went on leave who told me that she doesn't just judge on wheezing but on my history and how it affects me.
There does need to be a lot more education on non-wheezing in asthmatics- there have been times where I've been made to feel like a fraud and question whether I should be seeking help because I worry I'll be judged for not wheezing.
Becca x
I completely agree. I've never wheezed until recently (now I'm trying to get rid of it - never happy me!!) and the attention I get is so different - not just medical, but the public as well, as I found today after thinking climbing all the stairs out of Bank station was a good idea...
I've had some really difficult experiences with A&E/hospitals although now it's written into some system and I have letters from GP/Cons so not such an issue.
This definitely needs attention because, as others have said, I've been reluctant in the past to get help as I've felt I wouldn't be taken seriously (and the stress of that makes it even worse) - this is potentially a life-threatening issue.
Just read a post levels of control and saw a lady (sorry cannot remeber name) said doctor listened to her sons chest and said it was fine only to later he had 2 attacks and was rushed to a and e so there is no way his chest could have been fine.
How many times have people been told by a doctor there chest is fine when there symtoms are displaying clearly there asthma isnt fine? Is this linked to the no wheeze again does people think? Did the doctor not hear a wheeze therefore think oh nothing wrong?
There needs to be more done so that doctors can recognise when people are struggling with there asthma even when there chest apparently sounds 'fine'.
When i have been struggling i have often been told my chest fine yet i know perfectly well it isnt. Another thought was is it that there should be more than one condition here, ie asthmatic with wheeze called one way and asthmatics without wheeze called another way so that we can get the same equal treatment and understanding when we are finding it hard to breathe?
What do people think?
I too don't wheeze all the time, apart from when I have a chest infection. I think it has improved since being on Symbicort and Phyllocontin. Even when I had an exacerbation recently and ended up in a & e for three hours of back to back nebs the Doctor commented that he thought I would be more wheezy than I was. I cough a lot and produce lots of mucous.
When my local hospital referred me to the Brompton the Consultant I saw (who specialises in infections) commented that I wasn't wheezing and I told him that I don't all the time. I found him very unhelpful, secretive and pompus my local consultant wants to go to another London hospital but this man has put me off as he was so rude and arrogant.
This is a controversal point but it really does make me wonder if we who dont wheeze have something different to asthma, but it all acts the same. I really think people who dont wheeze needs some new research to see if it is asthma or something else or if it is a new kind of asthma that needs naming differently so we can get the treatment we deserve rather than been made to feel like fakes!
I know i get points where i just cannot breathe, no can i stop coughing, nor can i talk and know i have to phone an ambulance at this point but i always get told you have no wheeze or your chest sounds fine. That may be case but why cannot i breathe! And what are you going to do about it?
It is all very annoying and it is a life threatening issue because people always make us feel like we are making it up which is not fair! Any one else with me on this?
i sympathise with u all.I have suffered from asthma for many years but have always had a wheeze even when i am well. I am currently on a lot of medication and am admitted to hospital at least 6x a year.
It must be so distressing not being able to get help that or the treatment u need because you have no wheeze. It is the worse feeling ever not being able to breath and i strongly support tou all on trying to get research done.
Me too!
By the time I am wheezing I'm very poorly.
I usually get symptoms first (tight chest, getting really out of breath when walking, coughing - particularly at night) and the wheezing comes later as things get bad.
Like others, if I seek advice at warning sign stage I usually get sent away as I've 'got a clear chest', I'm definitely not imagining though!
no wheeze
Sometimes i do not have a wheeze, when i do its very slight. On one particular occasion recently i was not taken to hospital by ambulance, then 15 minutes later another crew rushed me in with a noticible wheeze, temp of 38 or higher and i was admitted for 5-6 days. More research needs to be undertaken, so asthma emergencies are recognised.
If i am waiting for a wheeze to appear I make matters a whole lot worse thats not wise at all.
Gill
Dont weeze alot but really tight chest and lungs feel on fire so yes needs looking in to more for everyone !
Been AnE in ambo and had no wheeze but asthma bad and a nasty chest infection.
For simply years, I've had ever other asthma symptom except the wheeze unless I have a chest infection. Which is why, it took to until this year's bronchitis and a visit to NHS24 at local hospital, I was given the asthma test and surprise, surprise - I do have asthma.
MInd you, all the getting out of puff, cough and mucus production (though still no real wheeze as yet), etc has become considerably worse since that bout of bronchitis.
Best wishes to all wheezers and non-wheezers suffering in this damp weather.
wheeze
iv often gone to hospital and again been told its not asthma cause i dont have a wheeze, this time i do and its kinda reassuring in a sad kinda way, it reassures me that im not imagin ing it ...... again on my second week of pred and antibiotics thankfully cause they heard a wheeze otherwise i doubt id have gotten then help i need , annoying , sickening and totally frustrating, as if we would waste their time, god we know what were dealing with, after all we live with it not most of them arghhhhhh, Donna xx
Hi folks!
Good news here is what Neil says in SUFA's post
""Plumie - I understand your point about wheezing/ non wheezing and promise to look into it in more detail. I know it has come up in our research team. I will report back.
I am a non -wheezer too and have it written on my detailed protocol.
I only wheeze when I get a really gunky chest infection.
Some people are unable to think outside the box ( or text book!) though in medicine there is so much for the med students to learn as well as asthma.....
I have has some really bad times when left with no treatment due to lack of wheeze and then having everything thrown at me because nebs not working.
Not had any problems over the last year or so.
Though.... I have, naughtily, used the No Wheeze to my advantage on rare occasions... saying I am fine! I hate attention so could get away with being not well when I shouldn't have been. I don't do it now!
Kate
People see Neil churchills blog today, it talking about how a wheeze is not the only asthmatic symptom! Please read and comment on it if you agree with what he saying.
Only just read this thread for first time.
Thankyou so much for raising this point.
I don't always have an obvious wheeze either. Sometimes have even wondered if I do have asthma.
But then when I get tight chest, shortness of breath, mucus production, etc., AND it is relieved by terbutaline...I realise I DO have it!
So relieved to hear lots of others have spoken of their experience on this subject!
All the best
CD
I don't often wheeze well actually almost never these days its quite comforting when I do cos I know air is moving. I seem to be an all or nothing person either I am moving air all around my lungs no wheeze or I am moving a bit around the top but the bases are silent. Nice new Reg came aroud today and listened to my chest and said ""no wheeze, but you are not moving much air are you?"" ""Er no that would be why I am here, wait until those lungs open up"". Certainly they know about non-wheezing asthmatics here are the RBH.
Hi My son is nearly 10 and has never wheezed, like you he coughs and coughs until he's blue. Our consultant and other Respiratory specialists we see regularly couldn't believe he was asthmatic as all asthmatics wheeze. It's taken a year to get anything diagnosed! I've been told by other specialists a cough is the main sign. We like you have gone to a+e and been told his chest is lovely and clear, 1 hour later we turn up in an ambulance and have been told to go home then but by then I'm shouting and they finally listen to me.
He has a Harrison's Sulci and curvature of the spine where he has struggled with breathing, when he is ill I show the consultant as his rib sticks out more and show them his breathing which helps with the red tape!!
More research sounds like a brilliant idea, it would really help our situation and may save our Son's life
Kate x
Hi all
Have just got in from a sleepless unproductive night in hospital.
I'm brittle asthmatic. Have had asthma all my life so I'm pretty good at knowing when things are not right.
My partners had a nasty flu type bug and on Sunday I developed a nasty dry cough which meant my chest felt really tight.
Monday, I felt worse so went to GP. They thought no definite infection but given my history was very likely to develo into one quickly do gave me antibiotics and steroids.
Tuesday, developed a streaming cold, cough became very chesty and felt very tight chested (although no wheeze), peak flow readings at 50%.
Felt really bad in the evening so called our doctors on call service. They could hear me coughing on the phone and said they didn't like the sound of it so asked me to go down. Saw a very informative doctor who felt I was in a bad way and got me a bed on the emergency assessment unit.
Got to hospital, seem quickly by an on call doctor who said he'd get bloods, x ray done and ask the on call chest registrar to see me as he works under my consultant.
After bloods without explanation got moved to a ward. After 3 hours finally got a chest x ray and after 6 hours finally saw the registrar.
He said there was no wheeze so to stop steroids. Thought there wasn't much point in taking antibiotics but could do if I wanted to ?!
Throughout this 6 hours not one nurse came and checked on me. When the registrar arrived it transcribed I should have had 2 lots f ventolin & atrovent in the time I'd been waiting!!
now I feel like a fraud, a tight chested, coughing, generally feeling terrible fraud. I have no idea what we are supposed to do in this situation?!?!
Anyway moan over!
Hev
Never had a problem with this but my peak flow is always mega high, like higher than average for my height and age so I never get taken seriously, I dont even bother rining for help anymore I just sort myself out and get family and friends to take me to hosp if i need to go, theres no point if they're just going to say ""blow into this tbue, oh 400 that means you're fine
yep no wheeze at all with me and have a normal peak flow of 590-600 - so when I'm ill and blowing 400 they think there is nothing wrong with me...!
I think there will come a time when all medical professionals realise that a wheeze is not neccesarily part and parcel of being asthmatic - and yep I think some research into this is overdue. It reminds me of when I was a child in the 80's and became breathless and 'itchy lunged' after being in cold weather - I wasn't diagnosed then because the GP catagorically claimed that asthma was not set off by cold weather and that an internal chest itch was not a symptom either...
Hello I'm new (to asthma and asthma.org). Been floating around the forums for a while 'til I saw this and felt the urge to jump in.
I was diagnosed three years ago with mild asthma but I've been charting a long sloooow exacerbation for the last six months. Only been to A+E once - back in August - but I'm off work again and back on pred after a bout of sinusitis. I took a lot of that nasty stuff in August, which made me really depressed. I'm currently tapering down and keeping an eye on the mental symptoms.
Anyway, I never get the sudden attacks, and I don't wheeze either. I cough a bit, but the main symptom is a tight chest to the point of feeling completely suffocated. My normal peak flow is also very high and only ever drops to 400 thankfully, but that's enough to make me feel seriously ill. I've been turned away from the out of hours GP and made to feel like I was making it up. So humiliating.
I wonder if you non-wheezers are also slow exacerbator/recoverers?
Cough
Hi
First time on here and thought this topic hits the nail on the head! I only ever cough never wheeze I am 22 and I have had asthma for almost 20 years. Mine is very mild but still has its problems for example being unable to join the Royal Air Force (so its not a problem more an inconvenience). What makes it worse is my boyfriend of 4 years isn't convinced there is anything wrong with me. All I say is he doesn't have to experience the tight burning pain I feel when I exercise without medication or when I have a cold/flu/chest infection!
Great site wish I had looked at it sooner!
This is sadly all so familiar. Time and again we have heard this. At first we did not know any better and took the doctors' words for it – now we know better.
However on a couple of occasions our son nearly died because of this lack of basic knowledge.
2 memorable times stand out in my mind. On the first occasion, when our son was 5, he was seen in A&E by a pulmonologist and sent home. Only to turn blue 1 hour later and be barely breathing and quite literally fighting for his life. He was so ill a team from ICU were sent to our home to stabilise him as the first ambulance that came found him too unstable to be transported to hospital.
On a more recent occasion a late night trip to A&E resulted in the doctor saying......
"" I am sorry - but your son just needs to learn to relax. Maybe I could prescribe him some counselling?"" - 24 hours later he was admitted to ICU with double pneumonia for a week of IV antibiotics, steroids and observation and a O2 level (which was not checked by Dr ""just relax"") of 75% .
Thankfully we have a wonderful paediatric pulmonologist but she is based 2 hours from home. So a A&E trip to her hospital is not possible. One day we were at a consultation with her and it was the same day that final year medical students were undergoing oral examinations. After discussing the ""just relax"" statement and experience with her. She gestured to the waiting students and told us words to the effect of -""if today one of these Students do not correctly reply to the question ""Is wheezing always a symptom of asthma"" I will personally fail them as this is fundamental and they don't deserve to be doctors if they make that mistake. As one day it could cost a life"".
That really is the brunt of the issue - this misconception can cost lives and in all reality sadly maybe already has.
I also don't wheeze but cough, cough and cough and get tight and very short of breath. I generally have really good peak flows for my size/height so when I'm blowing high 300s they all think I'm fine but I'm not. More research/increase awareness sounds fantastic (especially for the NHS direct staff who 'couldn't hear a wheeze' down the telephone!).
No wheeze
Hi , I am new to this website - i really need some answers as to my child's condition and I am so relieved I have finally found some others with the same experiences. My little boy of 5 has been suffering with chronic coughing since he was 2. I went from gp to gp who all told me the same story - "" he is not wheezing, his chest is clear so nothing to worry about "" The problem was that every tme he got a cold or other respiratory infection he would, cough, cough, cough which meant more gp trips . Eventually he was given a brown and a blue inhaler which has never really worked - so a few times i have landed up in the gp's surgery with a very sick child unable to eat or sleep from coughing and they have had to resortto 3 days prednisolene which has sorted him out.
When he was three I paid to see a paediatrician when i was in holiday in South Africa out of sheer frustration with the nhs. He put my son onto singulair which helped him enormously.
Only problem was that when I got back to the UK i had to really kick up a fuss to get him onto singulair ( i was turned down twice )- i had to stick to my guns and be firm and eventually my gp complied !
He was symptom free since february when i took him off all his meds.I though this is great - perhaps he has now grown out of this ! However he is now at the tail end of the flu virus and over the last two days his coughing has got so bad again to the point of him gagging and almost vomiting when he coughs. Again we were told just brown and blue puffers are all thats needed as no wheeze ! Well the brown and blue puffers are not helping at all ( same old same old ) so again its back to the gp tomorrow to beg and plead to get him some real help !!
Why is asthma so incorrectly diagnosed in this day and age and whats this stubborness with gp's to stick to the "" standard medication ? "" I think perhaps its down to price as they are all trying to cut down on prescribing budgets whilst not always looking after their patients best interest ! Why dont they listen to what the parents are telling them ? And why, why should I have to plead to have a medication prescribed which has been the only thing which has worked ? You would think they would take into consideration the fact that my late father was a bad asthmatic and i myself have had periods of breathlessness, constant coughing etc almost most of my adult life. Is there not a strong genetic link as well ?
Any comments would be appreciated. Anyone know of any good specialist i can see who will be able to help in this area ? I dont mind paying. I am just at my wits end with it all !
Hi my 6 year old daughter has had similar symptoms where she has had coughing fits at night to the point where she is struggling for breath, being sick and cannot stop. Whenever I take her to A and E it depends which doctor is on duty as to the kind of care we get. Her chest is always clear, she isn't wheezy and her oxygen levels are good but she is clearly struggling!! Out of desperation I insisted on an appointment with a paediatric respiratory specialist. My doctors surgery were actually very good and were treating her accordingly it was just the attacks and trips to out of hours and A and E were so frustrating and scary!! She has finally had a diagnosis of cough variant asthma which is what I had suspected all along. She is on a new purple inhaler called seretide and it has been amazing so far. She has a cold which is normally a huge trigger but her coughing has been manageable with her blue inhaler. The consultant was amazing and has given me high dose steroid tablets to treat her at the first sign she is beginning to be unwell. She also allergy tested her and she has slight allergies to tree pollen and house dust mites!! It's taken me 5 years but I now feel positive she will receive the correct treatment following her diagnosis. Keep insisting and don't let them fob you off. Insist on a paediatric referall. They have stopped giving out soluble steroid tablets now due to cost but my daughter cannot tolerate the tablets you crush and put into food. They were making her gag and very sick so were completely useless. She was reluctant at first to prescribe the soluble tablets but did eventually. It is a shame the care we receive depends on a these factors!! I hope you get the help you need as its so hard when all we want to do is help our children be well.
This has been a very good strand of discussion and Asthma UK recognises it's something we need to pick up. I am afraid this is not a response to you olliepops as I'm not a doctor so can't adequately explain some of the difficulties in diagnosing children (of which there are several). I'd really encourage you to ring our freephone Advice Line and talk to one of our specialist asthma nurses who will be able to answer your questions and offer some guidance. The number's at the top of our web pages. Access to a specialist might help and certainly needs to be easier but I'd suggest speaking to a nurse first.
On the general subject of wheezing/ non-wheezing, we have an immediate opportunity to raise this constructively in the asthma consultation events which start next week (and we can write in too, when the document is published). The clinical guidelines for asthma show clearly that wheeze is a symptom, not the only symtom of asthma. This is an instance where the guidelines are not always being followed and although there are issues with primary care the main danger seems to be in A&E. We need to get this message across as it has implications for training, A&E procedures, access to specialists, action plans (which can facilitate speedy access to respiratory wards) and more. sophiez makes the point that this costs lives. We had a meeting yesterday of people who'd lost loved ones to asthma and we discussed cases of people who had died after being sent home when asthma was not spotted or taken seriously. The comments people have made on this strand need to be read by the Dept. Health and colleagues in the NHS and we shall certainly bring the matter up.
Hi Olliepops,
Neil has made a very good point about us not being able too give a medical diagnosis, in children, especially your son's age, it's mostly down to the competence of the doctor to spot the signs, as most tests require the patients input. Do have chat to the AUK nurses, they're really very good.
Your GP, may be one of those who doesn't understand asthma very well, would it be possible to get another GP to see your son. The reluctance to prescribe meds isn't budget constraints, well a bit maybe, but some have side effects that can have a lasting impact on a child. The 'same old, same old' medication is actually the correct procedure, but if ventolin and the clenil modulite (brown inhaler) don't control the symptoms, then the next step is additional treatment, and singulair is listed as an option, it has been shown in your son's case to work.
There is no way we can tell if the asthma is the cause of his cough, or just the tail end of his recent cold, which may have returned. Hope the GP can sort this out, but if you feel he doesn't listen to you, speak to the practice manager. They are a good point off call, and can usually sort things out, as an official complaint looks bad. Failing all that, change GP, speak to friends and get a recommendation. Some of us have good relations with our GP, and treatment is a two way communication process, and you don't appear to be getting that.
Good luck and keep us informed
Chris
On a separate note, Neil, I hope that the DOH will read some of the posts on this thread, your recent accompanying blog, and that these consultation meetings that a few of us are going to will eventually lead to a better understanding of the failings in the present system.
Yes indeed I plan to take some of the comments from the blog (and the forum thread) - kept anonymous of course - and write to the DH as part of our consultation response. Hope to see some of you at the events. I am going to Walsall, Liverpool & Stansted.
Just joined this forum. Just found out there are others like me with tight chest, struggling to breathe, but little, if any wheezing.
At my last lung function test,the doctor listened to see if I had a wheeze but I told him I dont weeze.
He got the thing out and listened to my chest and back,even though he did it over the top of 4 layers of clothing.
Hope when I go back in 2 weeks for a third test in 6 months hope he will also do a allergy one.
what a great site. i must say i am fed up with being given conflicting advice from different medical parties regarding 'the wheeze' i had my little boy (2 and a half) in hospital for 5 days back in october with a severe attack after just being diagnosed a couple of weeks previously. since then he has had a nasty cough with a high temperature which i was told was a viral cough and after a week of 40 plus temperature was given antibiotics which practically 'cured' him overnight. however, before that - while coughing uncontrollably i gave him 10 puffs of ventolin (as advised by the hospital on departure) and called an ambulance only to be told his chest is clear and he has no wheeze and if he is coughing he is breathing! also by giving him ventolin when he is not actually wheezing you could be doing more harm than good. so this weekend i have let him cough cough and cough some more til i could take it no more and gave him some ventolin again which eased the cough straight away and made me feel like i have let him suffer for 2 whole days. i am really not impressed that such a seemingly 'common' complaint is not universally known about and feel quite cross at being made to feel like an over anxious neurotic mother by someone in the caring profession. - no blame to individuals though, only to those who train them or give the information out to the trainers.
Audible Symptoms
Hi Plumie, You are not alone when you say some of the medics do not know how to diagnose. I to am a seldom wheezer unless I laugh, my family refer to me as Mutley as I wheeze when I laugh. However when I am bad I have a proper wheeze but before then I get short of breath. My GP has told me that being short of breath is not an indication of my condition deteriorating. Yes it is about time that the medics understand both the symptoms and the condition of Asthma itself.
On a personal crusade note, can we all make a note to do a few things?
1. We are not asthmatic we have asthma.
2. Asthma is not a disease we are not infectious we have a medical condition. And
3. Tell everyone that we are no different than them on the outside, the diference is on the inside.
Take care and I hope to see you soon.
Please note these are my own personnal views
Hi All
Yes I am the same my chest feels so tight and I am struggling to breath but I don't have any weezing at all. I have used my ventolin loads this evening but it has not really had any impact. I am thinking of going back to my GP tomorrow but I know they will think I am exaggerating because I am not weezing.
No wheeze - so go home!
lorrymac,
I know just what you mean! I had bad allergy/asthma over summer inc a trip to ressuss unit. Advised by docs to go back if symptoms flared up again. I started to get better, took a venture to an outdoor event one hot sunny August day - there was lots of straw on the ground getting trampled on - so guess what happened.
My asthma got frightenly bad, + my face and throat swelled, took loratadine and kept using blue inhaler, would work for 20 mins then symptoms flared up again so off to Casualty for advice, wheezing was intermittent so guess what - not happening when I saw consultant. In spite of my symptoms, history, looking a state, shaking like mad from too much blue inhaler, nearly passing out in waiting room, coughing so much I could hardly talk, I got 'Your chest is clear - go home and try a piriton'
Thank god it worked and began to ease things!!
Hope your little boy gets better soon.
I completely get that!!, or rather, don't get it, the weeze. I am a cougher, and have been since I was a child. I don't have sudden attacks, but just get a tight throat and a cough. Once when I was out at my uncles, I developed a cough that wouldn't go away, called an ambulance and was told, its just coughing and an panic attack. Yours SATS are fine, you don't have asthma! So, feeling very embarrased and fake, I stopped my meds and jus got on with it. Anyway, a year later I was at the GP saying, I can't stop coughing, its been getting steadily worse for ages, she said my peak flow was 50% of what it should be and put me immediately back onto inhalers and a dose of steroids, ordered to go back to see the asthma nurse.
When I saw her, I said, I don't weeze, don't have sudden attacks, told her about the ambulance and said I don't believe I have it! She showed me a model of an airway, showing that when it gets inflamed, it gets irritated, the body produces mucus to soothe the inflamation and when that gets to your lungs what are you going to do?? Cough!!
(Also that paramedics aren't doctors and should go on what you're saying, not the other way around )
Why can't everybody have it explained like that?!
I have no wheeze or even a cough when having a bad day. Family have noticed I just sit very quietly, not even on laptop much - feels to heavy for my lap. Breathe through nose but feel only a very small breath goes in and out. Absolutely nothing for any examination to go on except maybe PF which today is 200.
So, should I find myself taking even smaller breaths and PF to drop anymore and get husband to run me up to A&E, guess I'd be sent home as a fraud.
Wondering what is really too low and when its time to blow the whistle. OK, for DH to blow whistle on my behalf. LOL
hi
bumped up for HUTCHIC
I'm so relieved to read that I'm not going mad! I had a bad attack 2yrs back and got rushed to hospital but when the medics 1st came out they thought I was pulling their legs as I wasn't wheezing nor coughing. I was rather semi conscious.
At hospital they took arterial blood(ouch!) and found out my oxygen levels were down to 60% and my potassium levels well down so had to go on a drip.
It made me feel really stupid at first everyone thinking there was nothing wrong with me.
My normal peak flow is 650/700 so when it's 450 they look at me with big eyes and can't believe it!
I hate that.
Has anyone ever had normal oxygen levels(according to that clip on finger) but blood tests showed low levels? How can that be?
Would love to know that.
Regard Lydia
It was refreshing to read this, I rarely have a wheeze but a never ending cough. The gp does not know if this is asthma but I have been given medication. I have got a cold at the moment and just coughed so much I was sick. When I get like that I feel like I am struggling for breath. It keeps dying down again but I know that it is not right. It is fascinating how many people have responded to this and it is good that asthma UK are taking this up x
describes me to a T
cant thank glynis enough for getting this info for me and re opening the conversation. i sometimes have a weeze but usually about 3 am in the morning when no is around except my very tiered boyfriend. when ive been given a Neb all is well for a few hours and its the only time i can take what i call a full breath without pain in my chest, the hospital docs say my chest is clear and send me on my way with a prescription for another 5 days of steriods. I was given a neb yesterday and felt great. now im back to 3/4 breaths to stop the pain and starting to fell really tight chested again. i really feel like a fake at times. i just want to be able to take the stairs and not feel like im going to pass out. although im sad others are suffering i know now that im not going nuts as well as breathless x
Lydia, wow what do you do to get a PF of 650-700, thats extreamly high for a female, I wish I could maintain that level, perhaps I need go back to GP as only manage to keep low 600's, but peak at 740+ once in a while.
Jealous!!
I thought my PB PF wasn't too bad at 500!
Nowhere near that at the moment of course.....lucky to get 300 just now :o(
Fee
I couldn't agree more. My little boy of 3 and a half has hardly ever wheezed. He gets an increased respiratory rate and his breathing is ""audible"", change in his voice and laugh (he's such a chatterbox and I think he can't bear to stop talking, so he adjusts his voice accordingly!), he gets ""tummy ache"" (chest tighten/pain) and eventually the accessory muscles kick in and trachea dip etc. Then and only then do you hear a very slight wheeze. But, when you talk to teachers, carers and family that might be caring for him the thing they are looking out for is the wheeze. So here, here for research! Maybe I could make it my post-grad project....if I ever get back to work or education!
Glad it helped everyone bumping it up again xxx
big thanks to plumie who set this thread up xxx
@woody: always had a brill pf. I remember being about 11years old and we did a lung volume test in biology. Had to be the guinea pig and blow in that tube...well my teacher said I had a ""horse lung"" lol
used to do a lot of sports though. I guess that hel
I am ""enjoying"" an amino break at the Brompton and the SHO who saw me first listened to my chest and said ""ah you are of the non-wheezing silent chest type"" before I had had a chance to tell him. So there are some places that can tell the difference between non-wheezers and non-air movers.
unfortunately im a non wheezy, fed up stating to dr regarding this,,, but on last two a and e visits wheeze was evident , i thought 1 less thing to argue about.time i got to ward it was gone and hey ho back to old saying i dont normally wheeze, lungs just gubbed.......
the constant cough
I'm responding to Kath C sort on 6th jan.
I too have struggled with Dr's miss treating me cause I don't wheeze at cough. I spent 6 frustrating weeks in june going backwards and forwards to GP'S seeing 8 different ones and asthma nurse. Finding they wouldn't give me what I needed cause I don't wheeze. But how come my manager and friends know when I'm not right.
Anyway got so frustrated and at wits end phoned helpline. Who suggested it could be bronchietasis due to constant cough. I suggested this to Nurse at my practise and got well we not medics. This was even more frustrating. I don't like that attitude as I'm a nurse and can suggest stuff to dr's at work. Anyway eventually got referred to specialist and have been diagnosed with bronchietasis. Constants cough cause of over production of mucus with collects in pockets in abnormal wide airways. Same treatment as asthma and have attacks where can't get breath.
When I'm bad I need antib's and steroids. As its infected.
I am also asthmatic.
I'm not suggesting it is this but might be worth asking.
Revcath x
I am so glad to have come across this topic. I don't wheeze either but when I am bad I cough until I vomit(not nice) and I am so tired and weak but I am so unsure of what to do. In this instance I thought I had the cold and even when i got as bad as above and had to go to my GP i felt like a fraud, I put this down to my one and only visit to an Out Of Hours Dr who told me no wheeze just a panic attack induced by taking too much ventolin promptly got me to breath into a brown paper bag and sent me on my way !! I have since had episodes where I have had to use a nebuliser, steriods, diagnosed with mild COPD and since Sept 09 various different inhalers because my Asthma is so eratic my peak flow for the last 3 wks has barely risen above 250. I am at my wits end because I cannot seem to read my condition effectively and receive such conflicting info from various health professionals who I am sure are doing their best but I seem to be like a car with an intermittent fault and we all know how frustrating that is for the owner and the mechanic
Sorry for the rant but thank you for highlighting at least one piece of the jigsaw for me.
Thank god i found this page. I have 3 children who all suffer from this. I am totally fed up running to the doctor because they cant stop coughing only to be sent home again because ""their chest is clear"". I have spent hours on the internet looking up ""asthma - chest is clear"". On UK sites there seems to be no reference to his type of asthma (not even on NHS sites) but if you look up the US sites and search for ""cough variant asthma"", there are millions of results. Paediatric planet is a good site for children and web md gives a lot of information(not the boots web md). I actually got to the stage where everytime i took the kids to the doctor I came out feeling totally paranoid and almost stupid. In the end I printed out the information from the internet and brought it with me to the GP. I got the asthma nurse to put it on their notes that my children do not wheeze. Seems to have helped a bit except that every time I take them to the doctors I get to see a different GP and have to explain the situation again. One night in particular I took my eldest son to the out of hours surgery because he could not stop coughing. There was less than 30 seconds between each bout. He coughed so much in the waiting room that he threw up a load of mucus on their floor. I explained the situation to the doctor and he said yes i heard him coughing asthma couldnt make him cough like that and his chest is clear. I was furious. On another occasion my other son (aged 3) had to go to the doctors 4 times before I could get him a dose of steroids, the delay in getting the treatment meant that the dose of steroid on his managment plan wasnt sufficient to cure the cough and he had to be given a further 7 day course. Currently they take singulair in addition to their normal inhalers (brown blue and purple) and it has helped the night time cough significantly. They also take an antihistamine daily.
Somebody in the UK needs to bring cough variant asthma into the public eye so that people recognise that a coughing fit is an asthma attack to people suffering from this condition.
Rant over!!!
My cough is really nasty and my main symptom and then tight chest and breathing bad,
keep telling my hubby im going sow my mouth up and talk through my ass,
but on a serious note doc and con sound my chest and say its ok and the Ambo men do then I Say I DONT weeze only when its to far gone and in a state . Glynis x
My daughter is 14 months and was diagnosed at 6 months due to several hospital admissions. She sometimes wheezes but more often than not has a horrific cough that leads her to repeatedly vomit until she cant catch her breath in between. The paramedics that came last time listened in and said she didnt have asthma as her chest was clear! I was astounded as she is under a consultant, is often on pred and has had many admissions through attacks, all of which Asthma has been confirmed!
I wish that the medical profession all sung from the same hymn sheet so to speak and it was recognised among everyone that the symptoms are different than just a wheeze. If only things were that simple hey?!
Plumie,
What a fabulous response you've had to this! I had to take my son back to the docs the other day and have now made a point of labouring the fact that he never really wheezes (until he's really far gone), just because of you raising it on this forum. The GP I saw was fab and was more interested in crackles anyway as he thought it was a chest infection, which it's turned out to be as the antibios are working a treat (hopefully we'll get some sleep tonight!)
But seeming as so many people have replied to your thread, what can be done about it? Do you think it might be worth contacting Asthma UK directly to see if they could do some educational work or a campaign to raise awareness or something? I really think it was an important issue that you raised.
Wheels, if you look down the posts for a few posts, @ end of november by myself and Neil (from AUK btw) you'll see that the wheels have been set in motion, thanks to all who contributed to this and similar threads/blogs
Excellent news Woody-som!
Yes, thanx very much for raising up this important issue.
I started off with a really bad coughing fit today as I got in from the cold, so bad it made me sick and then weirdly enough I was wheezing really loud!? Must be the cold as I don't wheeze often at all.
hope you're all doing ok in this big freeze.
Lydia
some of my worst attacks have been without wheeze and ended up in itu a few times
My Husband
My husband is the same. He was recently hospitalised, came out on Xmas Eve and was back in A & E 4 days later. He was so worried he would be sent home as he was not wheezing but as an asthmatic he knew he needed to be admitted.
He wondered if the prednisilone course he was on from the admission 4 days prior had opened his chest enough to stop the wheezing. He was admitted for a few days and largely only because he had only been discharged some four days earlier.
def had hospital appt yesterday and pred on 22.5 at mo but when reg listened to chest it was clear and no wheeze so tols him don't really wheeze and answer was reduce steroids by 2.5 every 2 weeks and go back in 8/52 when down to 10. since not got under 20 in last year and am already nebbing 1 or 2 times day could be interesting esp when nebbed 2 x yesterday and had several puffs of bricanyl. not impressed.
*bump* for trudster
Look!
Similarly, sometimes asthma can present without the symptom of wheezing * pg 105 sec 371
Hi look what has got in to the national strategy for COPD, in the asthma part!
I think the message that not all asthmatics wheeze has got to one of the places that will make a difference!
Thank God for that, My Son and I don't wheeze and this has nearly killed us both, fab news
No Wheeze in some Asthmatics
I was first diagnosed with asthma because I had a very troublesome cough that would not go away - it would catch me at any time and I felt highly embarassed by not being able to stop - almost to the extent of being sick. It would keep me awake at night and no amount of cough mixture would help. I went to see a doctor in our practice who I had not met before and she immediately suggested I should be tested for asthma. I was surprised, as like so many others I thought I would be wheezy with all the other 'typical' asthma symptoms.
Once it was confirmed that I had asthma, the inhalers helped tremendously. Not once has a GP ever doubted my asthma. Thankfully it was picked up by my cough. I had one attack early on, that was triggered by smoke from a BBQ. I began to cough and then I couldn't breathe. I had to take several puffs of my blue inhaler to help, but not once did I wheeze - I went from a very bad cough to difficulty breathing and chest tightness. NO WHEEZING!!!!
Glad to know I'm not alone!
I've been accused of taking an overdose because I was having severe asthma with no wheeze. This was after several hours in A&E, treatment with magnesium and steroids and nebs, then the shift changed, and the new doctor declared it couldn't be asthma and that I must have taken an overdose.
I now carry a letter with me at all times from my consultant stating that I do have asthma, but I don't wheeze. This (mostly) solves the problem.
bumped up for people talking about no wheeze!
Jools66 your symptoms sounds very very like what i have been experiencing but now my doctors are saying it is not asthma as i don't have a wheeze. why do some doctors not recognise that not everyone has a wheeze?
No wheeze
Sometimes i present with no wheeze and a few hours later will have one. I dread having one cos i have associated it with me having to be admitted. But its likely the asthma has not respond to all the meds and i need more help. Hmmm....when i don't have a wheeze i feel like a fraud but this usually means my asthma is worse...ie , silent chest, brittle asthmatic etc. We can't win!!!! gil
I recently raised the same issue here healthunlocked.com/asthmauk... as I've had two experiences with paramedics refusing to believe that my son is having an asthma attack, saying he just has a nasty cough. The first reluctantly nebulised him but then left us and he had two further attacks that night, the second refused any treatment.
I complained to the local ambulance service who were great and have brought forward some asthma training they were planning and will focus on this issue.
some of the other replies I got were helpful, for example carrying a letter from GP, Asthma nurse or consultant might help?
I have also emailed Asthma UK raising this issue for further campains for them. Perhaps some more of you could do that and they can help raise awareness of the issue?
I'm very interested in this topic. I still find doctors who say if there is no wheeze then no asthma. During one really bad episode, I felt completely alone. I was concerned that I might die and there was no one there to help me. Is there something we can do?
I always thought you had a wheeze if you're asthmatic too until I was diagnosed 2 years ago and told by the asthma nurse. I don't wheeze either,just cough and feel breathless especially if walking or housework. Some people don't see asthma as being potentially life threatening.
My daughter has just turned 6 and we have just received a diagnosis of cough variant asthma. I was completely at the end of my tether with our treatment at A and E and the countless times I had been made to feel ashamed for taking my daughter there when her chest was clear with no wheeze!! I have sat in A and E for 3 hours, with my daughter clearly struggling from non stop coughing and being sick, to then be sent home with no treatment. They are very reluctant to nebulise without a wheeze even though I know from past experience this helps!! My daughter has had these difficulties since she was 1 and even had a fit when she was younger due to her oxygen levels dropping. I cannot describe how distressing her attacks are and they always seem to be at night. Cold air is a huge trigger for her so if she has been running around in frosty air during the day it can bring on an attack by nighttime. I really do think there needs to be more awareness of this type of asthma as even medical professionals seem unaware of the condition. She has recently started on seretide and this seems to be helping. We are also going to try a strong burst of steroids at the start of her symptoms to see if this helps. I am just thankful the paediatric consultant we saw today was so knowledgeable on this subject and we have the diagnosis. I am hoping this will help with any further trips to out of hours doctors or A and E. I was losing sleep most nights in the winter months as I was worried she would have an attack and I wouldn't wake up. Her sister was also getting very distressed watching her attacks. It really is a worrying condition with nowhere near enough research into the causes and effective treatments.
I rarely wheeze either however like you I thought I was the on,y one who doesn't wheez, certain,y been made to feel that way!
My asthma is brittle and flares up do quickly it's scary! It's often triggered by allergies etc, I can tell when it's getting bad as I cough constantly and the cough changes (sounds daft but I know my cough!) also know by walking as get a sore back at the bottom and side and struggle to walk at normal speed or climb stairs
Also my reliever doesn't help me and can generally make me cough more spacer or no spacer!
Currently having a bad spell been ill for 6 weeks on antibiotics and steroids as bad chest infection then sinusitis then back in chest again! At consultant tomorrow for a routine check up, but I'm exhausted and worrying about when I can get back to work - sorry to rant on
I don't have a wheez all the time and find it very frustrating how some know and others don't.
Yet all the other symptoms are the same. I was also told by the respotary consultant than someone with no wheez is dagaruce an needs monattring closely.
I can relate 100% as I am desperate for someone to acknowledge that there must be something like a silent wheeze because I have it!!! And it is causing me a great deal of difficulty! Same symptoms as yours and those are quite bad but still am told when in desperation begging for help that there is no wheeze!!!! whilst I really struggle to breath!
I have also a lot of swelling in my airways/chest and burning etc.
Did this ever get done? It's seven years later and people are still being turned away because there is no wheeze. This is even more difficult for children who can't speak up for themselves.
I had been really poorly for quite some time... With shortness of breath, chest tightness, chest pains, lightheadness, cough/ mucus, no wheedle...inflammation and on the top of it all another chest infection on the bottom of my lungs, then candidiasis in my airways from all the steroids I had been on... Then another upper? RedoirAtory infection which I cannot recover from . I had been seen by hospital asthma nurse first time in August and she said that in her opinion I don't have asthma... and I was advised to ditch the steroids which I did!!! I soon started feeling a bit better but have also been taking for a while a serrapeptase enzyme and other homeopathic remedies. I am to be seen by Lung specialists at the and of Nicember and December ... I first fell really ill with chest infection caused by heamophilus influenza bacteria in February 2016 and had been incorrectly disgnosed with anxiety !!! I have been struggling big time since. Have more symptoms coming from my left side though but can have general chest tightness from time to time as well. I feel really let down by the NHS..😩
I heard that a New Zealand patient began to recover from swine flu with Vitamin C injections. It became a current affair program over there. Google : new Zealand /swine flu / vitamin C. I have tried this and it has helped. But be aware that continuous overuse of Vitamin C - as in injections - can cause a lowering of different minerals and hormone problems. Also check out the book: Relieving Asthma the Easy vitamin way. It really changed my life for the better. Just be careful - You can overdose easily on Vitamin A. Vitamin A is also good for chest infections.
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To wheeze or not to wheeze!
Biologicals vs wheeze
