Well confused - Ventolin

OK, I'm really quite confused. Has anyone found that a reliever that has not previously worked suddenly starts sort of working?

Was planning to ring asthma nurse on here tomorrow for advice as have wait for consultant appt and no medication that works. Was feeling very breathless so I thought 'ok, maybe I will try Ventolin again and measure PF before and after to see what happens.' Ventolin as far as I know hasn't worked before for me, it's been prescribed twice by different GPs and never seemed to make a difference.

This evening, I had 4 puffs within 5 mins, maybe less (not doing that again if I can possibly avoid it, the shakes are terrible!). PF before, around 500. PF afterwards: over 650!! And breathing was eased though still had cough and feeling of some mucus being trapped in there (don't have chest infection as far as I know, this feeling isn't uncommon for me). Still better than it was though creeping back down and haven't managed to repeat the over 650.

Just wondering if anyone else has had this kind of experience? It's really confusing me; I will ask the nurse about it when I phone tomorrow but thought I'd post anyway.

Though confused am also kind of pleased, because this does show that my 'excellent, better than predicted' PFs of around 500 when very breathless, which have had medics saying it's not asthma, are obviously not good results for me, if I can do 650 - and if there was that increase after Ventolin then I am pretty damn sure there's asthma going on here (was fairly sure anyway, but this seems very suggestive to me). Not that I want asthma, but I seem to have the symptoms anyway so I'd rather have a diagnosis and some treatment than the hemming and hawing I've had so far.

Sorry for yet another long post, would welcome any contributions.

xx

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Hello philomela - just to say, bear in mind there are lots of other lung conditions, apart from asthma

Peak flow isn't always a good indicator, but it'll be interesting to see what your spirometry's like.

Mention the mucus, might be significant.

Hope you get the answers you're looking for

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HI Polly,

Thanks for your reply - I'd be interested to know what spirometry would be too if they do it again. I've had it before (a year ago) and it was better than normal though I found it hard to do. I've been singing and playing the oboe since I was 6/8 which may account for these good results.

I know there are other conditions and they're always possible (though like severe asthma, which I'm pretty sure I don't have right now and I have great sympathy for anyone who does after looking at some of the posts on here, most of them sound pretty nasty tbh so I hope it isn't them!)

However, given my age (25, have idea lots of the others tend to affect older people but could be wrong), history (used to have asthma as a child but it went underground for a bit till I got swine flu) and family history (stuffed with asthma and eczema sufferers) I think asthma's got to be pretty close to the top of the list. My GP is fairly sure I have asthma, but she was confused by the PF/spirometry so referred me. Guess I'll have to see what the consultant says when I finally get there! Really I just want some kind of solution as whatever it is is not being much helped right now.

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wow! peak flow of 500 or 650 is impressive regardless of asthma or not....

my predicted is 435 yet my best is 550 :S (although at the mo i am struggling to get 390 due to exacerbation and chest infection....) and yet i have brittle asthma.

a diagnosis of asthma shudnt be made on peak flow alone, its always best made on reversability testing (response to peak flow pre/post ventolin) spirometry and other kinds of tests....

also, things like knowing what triggers your symptoms?

hope u get a clearer picture from your doctor

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Thanks for your replies. Haha yes, my lungs think I'm a man, clearly!

Rang the nurse here and she said sounds like I didn't try Clenil/Symbicort for long enough as it can take a while (my GP said it should begin to in 2-3 weeks but I was so fed up with the constant breathlessness I went back after 2 weeks because it didn't seem to have even started working). Also said I need to keep a PF diary, which I did before but haven't been doing because it never seemed to tally with my symptoms.

Also I need to take the Ventolin up to 4x day and see if it works at all. Am going back to my GP as suggested, also apparently I sounded nasal on the phone (? never thought I had issue with this!) so she thought maybe there was ENT involvement which I should get checked out but don't know about that!

Are GPs generally ok with it if you go and say 'Asthma UK said xyz'? I don't want to get their backs up by suggesting they got it wrong, but on the other hand they're specialists here, and GP didn't have any further ideas except referral which has and is taking a bit of time, in which I'm still very breathless!

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Update and tiotropium

Went to GP this morning to say 'please help while I'm waiting for appt, going mad here'. She didn't think trying Clenil again would be any help as it ought to have done something apparently. Also can't believe I can be that breathless with PFs of 540 which is my 'reduced' PF, as that ought to be enough lung capacity for anyone! (She wasn't doubting me, I was obviously breathless in front of her though annoyingly was chest breathing, which I do sometimes but not that often and makes it look like it's all hyperventilation even though as a singer/wind player I am very much aware of the importance of proper diaphragm breathing even without asthma.)

Chest is clear, what a surprise. I'm not sure why she keeps listening, but maybe she's hoping for a surprise some day. I massively confuse her apparently.

Slightly worried though as she gave me tiotropium, something she thinks the chest clinic would try (attempting to anticipate them so don't waste this month while I wait) and on getting it found it seems to be only used for COPD normally! I know there can be a medication overlap between COPD and asthma but this seems to say just for COPD on the leaflet. I'm pretty sure, as a 25 year old who has never smoked and has abnormally good lung function, I don't have it but still a bit worrying - anyone else been given this for asthma?

Sorry for yet another massively long post!

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Don't worry about being given tiotropium. It is often used in asthmatics as well as COPD patients... From what I have been told by consultant it is a good inhaler as each spray has very fine particles and it gets deeper into the lungs which means more effective treatment....

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Thanks Malawi! Like I said I don't really think I have COPD (the same things that may mean I don't have asthma would also apply, even without the age/lack of smoking issue) but I was a bit worried because I'd never heard of this one and what with the leaflet was worried that I seemed to be on some weird exotic stuff because the normal ones hadn't worked. So good to know!

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wow

waw your peak flow sounds high, after 8 years i only just reacently got my peak flow to 400. one thing i was told though is not to take my inhalers too close together. i dont take more than 5 puffs of ventalin in an hour. if you are not yousing the accuhaler ventolin and your taking the scooshie one then make sure u use a spacer. it will help alot.

Rose

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Hi Rose,

It's not the highest on here! Seems to be related to the fact I've been playing a wind instrument and singing for years (the other person with a high PF is the same) - apparently it helps lung function a lot.

Thanks for the tip - no-one told me that before! I have the puffer Ventolin with a spacer, though I don't take the spacer out with me, just puff straight in if I'm out of the house. I did once take it 4 times in about 5 minutes (through spacer) and that was the time my PF jumped right up (but I got the shakes, urgghh) - otherwise, even with the spacer, it doesn't seem to work!

I'm kind of keeping a record of how often I take it on my PF diary but I hope it's not going to be misleading when I see the consultant - because it doesn't seem to work, I often don't bother taking it when I'm breathless so it looks like I had a great day when I really didn't. I only take it when things feel really bad in the vain hope it might do something - and I carry it round with me just in case things were to go really wrong, then at least it might help (haven't yet been so bad I've needed help, I don't think, or at least it eases eventually).

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hmmm.... i wonder if my singing has helped me to have a high PF then?? never though bout it before. although i havent been able to sing as much for past few years...

x

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I'm sure your high pf is simply down to your having played the oboe since early childhood. That requires incredible breath control & your lungs will have ""learned"" to have a big capacity, so a high pf isn't particularly significant for you. The proof of the pudding's in the eating and thank goodness your gp is clued up enough to look beyond your pf and understand that, despite it, you're having breathing problems and need help x

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Polly,

Thanks for your reply - yes, it is lucky that my GP is a bit more clued up and knows not everyone fits the same pattern. She's actually better in that way than the respiratory consultant I saw previously in London who didn't really put the pieces together and seemed a bit fixated on his own diagnosis without considering other possibilities (to be fair he did make sure to eliminate the really bad stuff, but having established I wasn't about to expire seemed to kind of lose interest in working out what it was). My GP is actually aware that there are things she doesn't know - I think it's helpful in any area of life to be aware of when you need to ask advice on an issue, and some of the stories people on here have shared suggest that some doctors are not willing enough to admit that they don't know everything.

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my best PF 550, i can become really breathless and feel extra weight of nellie when PF 400 yet practice nurse thinks that is okay, yet when i see my asthma nurse with the same, she alters my management!! (doesnt sound all that bad, but i can become very unwell really quickly from there, and i have done many a time!) same PF 2 differing, confusing opinions!! as my asthma nurse is obviously more in-the-know, i trust her judgement better, so always follow her advice!

i try to manage on max 10 puff 2-3hrly, if more than that then home neb + ring 999 if very bad, or if not si bad then go A+E by self

x x x