It may be that my GP and a&e are fed up with me or that (as I suspect) one particular cons has had a negative impact on my treatment but I am fed up with not being taken seriously for my now almost official 'difficult asthma.' I've had a fairly good run recently asthma wise (after last year's admissions over the summer) but I think my hayfever finally won yesterday. I was very sob in the night and coughing a lot with my peak flow down but not wheezy. Phoned the duty doctor this morning to ask about pred as I can go downhill pretty quickly and my peak flow resembled a roller coaster, who said ""you are talking in sentences so don't need to come in especially if you are not wheezy - just try to relax!"" By lunchtime I was really struggling and peak flow was below 50% so went to a&e as per action plan. My peak flow had picked up a bit - grr and I was not wheezy - grr again but had a new and felt better, a few hours later I was really struggling and sats were 92%. The nurse gave me another neb but Dr more keen on oxygen after abgs. Thought I was getting somewhere as felt better and happy to be discharged after a few hours of thinking I was going to be admitted. Started to struggle so asked for another neb when the Dr announced he thought it was anxiety on top of a mild infection (I'm sure he said the X-ray ruled that out earlier). Given antibiotics but not pred and when I questioned it he told me to go home and relax! Now sat at home with the ventolin playing peak flow roller coaster hoping the pred I had in hospital does the job of the week course I usually have.
So (after my rant), my question is how do convince people it is not anxiety without sounding anxious? The physio said I do not show any signs of hyperventilating, the resp nurse says I don't appear anxious even when on hdu - yet my cons and now GP think this is all in my head. Is there anything I can do to make it easier to seek help? I can't have another summer of constant admissions if no one will even take the asthma seriously. I am going to see the resp nurse next week so want some ideas/questions to take as she is usually understanding. (I should add that I am waiting for a mannitol challenge which the difficult asthma cons seems to think will be positive).
I don't know if this is going to help (i don't have difficult asthma so I'm a little diffident about trying to give advice on this)' but would it be of use to the medics if you could actually suggest what might be triggering this flare up. You mention hayfever, do you have any idea what sort of pollen might be responsible? This time of year is usually a little dodgy for me as I'm allergic to cow parsley pollen and I live in a rural area (so plenty of cow parsley in flower at the moment). Even if I manage to stave off the hayfever (which with the appropriate medication I usually can do), I know my system is going to be much more sensitive to other triggers.
Sorry I can't be of more help, but I do hope things settle down for you soon.
Can't offer advice but I'm with you , I've been having lots of other symptoms lately (not asthma related) which tie in with Vit b12 deficiency and anaemia however my blood results are JUST within normal tolerance. I asked if supplements would help before things got worse especially as I am having lots of symptoms, he scoffed at me saying there's nothing wrong with my b12/iron levels because they're within range and maybe I should look at giving up my job if I'm so tired all the time. I only work 15 hours and need to work! Another doc essentially suggested it was all in my head. I hate them being so dismissive when we know things aren't right, they rely so much on 'normal ranges /symptoms' and don't take into account how we feel.
I get this a lot, it's very annoying, particularly when people are moaning about you within earshot! . Some things that I've found help me are:
- get your consultant to write up an alert card you can give to a&e docs. It's not like an action plan, it's directly from your consultant and it should say exactly what to give you. Mine says 'does not wheeze' for example, because otherwise I get dismissed
- or carry your last letter from your consultant with you to show, take a photo on your phone so you always have it with you
- tell triage that you're a known difficult asthmatic. Gets people to open your records quicker so you have to fight less in the first instance and people are less scathing and dismissive
- sounds like you have already, stay v calm and say 'do I look anxious?' When someone says it could be anxiety or panic attack. Or play it the other way and say 'you're right, I might have a bit of anxiety but I don't think that's everything that's going on here'.
- argue back if you're sure., but politely. Of the doctor you're seeing is a junior, they won't have as much experience as an SHO or reg, you're allowed to ask for one of them. For example, ambulance protocol is that you shouldn't nebulise if there's no wheeze, but when I point out that I know this protocol and that I never wheeze, they tend to override it.
you don't have to wheeze to be having an asthma attack, not many doctors understand that. Hope things get better for you.
I think one of the major problems we have as asthmatics is that we are very well aware of how different asthma can be from individual to individual - sometimes I wonder whether the medics really appreciate that. Yes of course they are often extremely busy, with a tremendous workload - particularly in A&E - and perhaps a 'one set of rules fits all' list makes it generally easier to treat patients. But perhaps we, as asthmatics, should be more prepared to speak up and say 'no, actually that doesn't work/apply with me'. It might make things easier for both patient and medic if we did so. Of course, this will only work if the medics are prepared to listen and take on board what the patient is telling them.
Smilie2k2, your idea of consultants writing up an alert card is a really good one. Is this usually done, because if not it should be made standard practice for all patients with difficult asthma.
It wasn't with my ordinary resp consultant, but when I moved to the severe asthma team they were the ones who issued one. It has usual stuff like DOB, address and next of kin, but also consultant name, hospital and the asthma nurses' bleep number along with information about how to treat me specifically. There isn't actually an obligation for the a&e dept to follow it, it's still their call as to how they treat you, but most staff do or they ring the hospital your under and ask them.
This is very common with asthmatics especially with young asthmatics. Many will hear your ok your sats are good. However unless you have an a and e dr who has a lot of experience with asthma you will often be told that your ok and perhaps anxious and hyperventilating (which is a natural occurrence in early stages of an attack). The main reason particulalry young people will have high sats and then suddenly crash is because of the oxygen reserve they have so can cope longer than those who are older or decompensated due to other medical conditions.
I used to be told this often in A and E that I was ok and would be fine however would crash after a while and then need to go to critical care. Things only changed after being admitted to a and e so many times and they got used to me and how my attacks went. Now though I have a care plan written by myself, my consultant, asthma nurse and GP which outlines me, my treatment, my next of kin consultant and others in my team. The plan also outlines how to treat me during an acute exacerbation which A and E don't need to follow but they do follow it more than they don't. It helps a lot when they read it and makes a and e trips a lot easier.
I think having a care plan might help a lot of asthmatics and make attacks a lot easier.
On a side note it is not universal but hyperventilating is a common feature of an asthma attack in the initial stages particularly when there is the fear of not being able to breathe. It is a common sign before an attack starts to get worse hence why you feel so awful but have good sats and drs say you are hyperventilating and then you drop.
I feel for you. After my last asthma session I was in A. And E with a peak flow of 150(usually 450). They tried to send me home based on the fact I was not wheezing. (I rarely do and have always had asthma and am now 59). I KNEW I was in trouble and. They eventually treated me with a nebuliser and oxygen when my husband fought my corner for me.
When,oh when, will all medical staff learn that not all asthmatics wheeze. I have fought this attitude for many years. Take someone with you who knows this .
OMG I read your post and everything you said is just me.
"You can't breathe - so see a doctor
He asks if your worried about anything
You say no - Im only anxious cos I can't breathe.
By the time tell you 50 times you must be worried about something - you are flipping anxious
But only because there telling you your anxious."
Its laughable - had this so many times.
What really does come first the anxiety or the breathless
Tell you a funny story tho - I had a bet with my consultant that if he could prove I had anxiety then I would believe that that was the cause of a lot of my breathlessness.
So he arranged for me to meet a respiratory nurse consultant who used CBT (cognitive behavioural therapy) to help anxiety. and guess what - within an hour I realised I had so many anxiety issues it was no wonder i got so breathless.
Round 1 to Dr Bone. ha x
I still have therapy to this day. It does help. but the breathless still is there constantly.
What really does come first the anxiety or the breathlessness?? I don't think I'll ever really know.
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