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Is it Asthma or not - please make your mind up!

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Ahhhhhh! So they decided to do building work at the place where I work. By the afternoon was coughing due to the glue and paint they were using. Voice started to go (as it always does). So took 2 days off work as sleeping was hard (somebody sitting on my chest) and out of breath doing nothing. The last time I went to the doctors about this they said that it was definitely Asthma as she could tell from speaking to me and I had to live with it. So on Monday I felt so bad that I went to the hospital. The last time I did they gave me a 3 nebuliser treatments and felt a lot better. However, the problem is this. My peak flow never changes (always a steady 400-450) my chest is always clear and my oxygen levels 98+. So the doctors at the ER this time tell me that they didn't think it was asthma and to go back to my gp and told me just to take my ventolin if it helped. No nebuliser treatments. Now feeling like a fraud/hypochondriac yet I feel so ill. This has been going on for 15 years and nobody can make a decision as to what it is! Please help my asthma friends!

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19 Replies

hi Lovelymissc.

IM just the same.sometimes my pf drops low and sometimes it doesnt,

I dont weeze, just carnt breath with a elephant on my chest.

my oxogen had been not to bad but have most days a heavy chest,breathing bad and then get

times I just crash down low with pf. and on lots of stuff.

keep going back until you are happy and coping better.

ITS 2 years for me but no better and still altering meds,

good luck miss c ,hope you have a nice summer break soon.

lots of love Glynis x

Thanks Glynis. I am so glad we have this message board! Can't wait for the Summer hols! x

yaf_user681_23350 profile image
yaf_user681_23350

Hi I have the same problem and so does my Son peak flow doesnt seem to alter much, I will demand blood gasses next time, not nice I know.My Son's ribs and spine are deformed from years of uncontrolled asthma, that was part of the reason they realised it was asthma after 9 years. I have the same problem and neither of us wheeze. I breath strangely which shows I'm struggling so does my Son.I had a near heart attack because of lack of oxygen last December.It may be worth asking doc for nebuliser for home. I have one and my Son has 2, one at school as well.I have different meds to go in it. The hospital has let me and my Son down so many times.The neb has saved our lives,the paramedics are fantastic too and realise that not all asthmatic wheeze and sats can still be normal. I have managed to avoid hospital this year but have had so many close call (like last night!)

Take care

Kate x

I know rattles a nebuliser always sorts me out but my doctors just wont give me one! It is so frustrating. If they could actually see the difference it makes to me then I am sure they would change their mind! Off to doctors on Monday if still no better.

The things is nebulisers are good and effective in treatment. The draw back is that people in

past when using nebisers failed to seek medical attention leaving it too late. As positive results can be short acting. As such medical staff are reluctant to issue. Secondly they say 10 puffs multi dosing of reliever is equivelant to a nebuliser reducing the need for a neb. If any doubt about suitability for a nebulsier most dr won't prescribe one.

The requirement for a nebuliser seems to fall into 2 catorgories

1 frequent and or prlonged hospital admissions where a neb would prevent this by allowing treatment within the home. Usually has set indicators for seeking medical attention.

2 rapid deterioration of asthma where nebuliser gets admitted whilst seeking medical attention.

Oh dear lovelymissc, sorry your not having a good time with your asthma at the moment... Hang on in there, it will get better and you may find that your symptoms change with time too. I used to be a noisy cough and not much wheeze asthmatic now i have the loudest wheeze ever which is sooo annoying it frightens everyone especially in A&E. I get taken much more seriously when i am wheezing and yet i am almost certainly poorlier when my chest goes 'quiet' - when its quieter i'm not shifting as much air. I wish there was some sort of national guideline so that non wheezers were taken as seriously as wheezers.

I think if your voice is affected there is a condition that mimics asthma VCD? not sure hope someone comes along soon who knows and is of more help in the meantime take good care and it will get better soon, Lois

i think its so annoying as this notion you must wheeze as an asthmatic is bizarre - my previous doctor years and years ago said oh you dont have asthma as you dont wheeze now what 6-7 years on i've chronic asthma and i still dont wheeze (only when im severe and turning blue!) i think gp's need to aware to not rule out asthma because there is no wheeze!

If i did the research like i did recently i would not have severe asthma now and could/would tell the previous gp no this clearly asthma. I get glandular fever and larangitis and sinusitis/rhinistis, hayfever and ezcema - it was never six or seven different allergies it was the one under treated chronic asthma.

Now that im on a high dose of meds for the asthma all the other things seem to have dissappeared (apart from the hayfever and rhinitis though!)...i had to do a lot of work to get myself sorted out though! You really have to find a gp who understands the odd symptoms of difficult asthma!

i have the same problem it , the sorta things i get, althugh, my peek-flow is rubbish my oxygen i normally 91-97 but i dosuffer from realy quite bad asthma attacks but things are usually okayy, and they always try to pin it dow to other thing just because the say it sounds like its comin from the top of my lungs, but at the end of the day you know you're own body best and if it feels like your asthma flaring up, then 99% of the time it is. Hope things sort out for you x

Thank you so much

Thank you so much for your replies. It really does help knowing others are in the same position. Have struggled through this weekend, staying indoors and feeling sorry for myself! Will try and get an appointment tomorrow. Thanks again.

Lisa

x

Asthma-girl profile image
Asthma-girl

Sorry that you are having so much trouble with your asthma, I do hope you manage to get things to settle down.

You weren't alone having such a bad time with your asthma at the weekend, my asthma has also been a nuisance and still is seeing that I am doing this message during the early hours, I have had to have the out of hours doctor come to me and during the weekend.

Like you I think I will also be making an appointment to see my GP.

Is it asthma or not

Most times my oxygen level is at 99-100% yet i still end up in resus or get hospitalised because of a severe asthma attack. ( 9 attacks in 8 weeks)

My voice goes and I may sneeze once but cough quite a bit sometimes. However other indicators become transparent and I need to get nebulisors fast or i deline quickly. I use to feel like a fraud but now make no apologises. Quick action saves lives.

gill

Update

Just got back from the doctors. Another different doctor (apparently you can only book the same doctor weeks in advance - perhaps I should try and predict when I am going to be ill next!) Anyway turns out peak flow has gone down - now 300. Again listened to my check and said those words well there is NO WHEEZE! OMG! How many times! I told him that I don't wheeze and he said well perhaps you do in the night - no I don't I DONT WHEEZE! He has now put me on a big dose of the dreaded Pred which I love (NOT!).

Thanks everyone for listening and for the great advice.

PS - I DONT WHEEZE!

lovelymissc,

IF you type in the serch box on the top right of the page and put in dont weeze

you will see alot of us dont weeze,I dont also.

It does make you mad when the docs say your chest is clear and no weeze

when breathing is realy bad x

hope you go on ok with the pred,

love Glynis xxxx

yaf_user681_23350 profile image
yaf_user681_23350

Had same problem today, said chest clear but has referred me to consultant YIPPEE!!Wanted me to take pred but I cried as it doesn't work. Said if I don't want to take it he understood.Cant have other treatment with pred so avoiding it if poss

wiserlady profile image
wiserlady

You can buy your own nebuliser for about £50, a good one is £100, equal to the hospital one very often, I found it far more convenient and a lot cheaper to have one at home than to go 20 miles to the hospital with a taxi there and back at £60 and a day off of work unpaid each time.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to wiserlady

Just a note to say this post is 10 years old so probably won't get much response from the OP.

For anyone reading now: you can buy your own nebuliser machine yes, but the nebules have to be prescribed, and in the UK it's not common to have salbutamol/ipratropium nebs at home. Many doctors/asthma nurse specialists don't like people with asthma to have nebulisers at home, because it's often not safe. There is a real risk that someone can sit at home using their nebuliser until it no longer helps, they then need more asap but they are not in hospital so they can't immediately get additional treatment. This can be really dangerous and has happened to people, with not great outcomes, so they are often wary of allowing too much to be done at home.

In some cases of course a doctor can decide that it is in the best interests of someone to have nebs at home, but this generally comes with a consideration of the context (ie asthma level/control level, what attacks are like, where the person lives, how old/sensible they are), and strict rules ie you cannot just sit at home nebbing indefinitely, if they aren't helping you need to go to hospital anyway, and even if they do help you need to be in touch with specialist team/GP. While I completely appreciate the money/time/work convenience aspect of nebs (as a user myself), they aren't primarily for that and shouldn't be used to avoid hospital when someone should really be seeing you and advising.

I'm aware that the ideal use of nebs doesn't always happen. Some people I know have been given very poor instructions for neb use eg being told by A&E or even consultants to just go home and neb instead of being properly treated in hospital. This sadly does happen but it isn't appropriate or safe and isn't a good reason to use nebs this way.

wiserlady profile image
wiserlady in reply to Lysistrata

I understand what you are saying but each situation is different and I have lots of common sense.

My hospital is twenty miles away, with no transport, and self employed so not being paid when not working. At one stage I was having to be rushed to hospital in an ambulance at least once a month. When I got there they would put me on a nebuliser, just an ordinary one, give me antibiotics and steroids and leave me laying there in bed for a week. That was yet another week where I was not able to be at home, take care of my children, earn a living or see much of my partner. It almost took over my life and I was going to have to shut down my business and have no income and debts.

As that is all they ever did I decided to get my own nebuliser and insisted that my doctor gave me antibiotics and steroids whenever I needed them instantly at home, with a rescue pack ready. They thought it a great idea.

And it also meant a lot less wasted time and stress.

There was about six months where I would have been lost without my nebuliser.

My lungs only function at a quarter of their capacity when I am ok.

So all of that was remembered when I made these decisions.

And it is my decision, nobody else';s, , its not for someone else to say that I should prefer to be in hospital a lot of the time, and shut down my business and have no income instead.

I have studied this subject very seriously since I became ill. I know I did the right thing for me.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to wiserlady

I can't comment on your personal situation and it may be your decision for yourself and the right thing for you, but your initial response seemed like you were suggesting that others buy a nebuliser machine and use it as you have done. For many people with asthma, this isn't possible nor is it right for them.

As I mentioned, you have to get the medication prescribed even if you can buy a machine - anyone who just buys a machine without being given the nebules is wasting their money, and it isn't standard practice in the UK for doctors to prescribe them to most asthmatics (the situation may be different for COPD, but this is an asthma forum).

There are reasons that it is often not safe to have nebulisers at home for many asthmatics, as I've said in my previous post. They may not be relevant to you or to everyone, but they are relevant to a lot of asthmatics who may be reading this, and I wanted to make sure that anyone reading your post has the facts and doesn't rush out to buy a machine without discussing it with their doctors - and why they might well be told they can't have home nebulisers, or that they need to have strict rules in place if they do.

wiserlady profile image
wiserlady in reply to Lysistrata

I know it is different for everyone, which is why a one size fits all does not fit me.

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