Bit stuck (not emergency)

So hopefully this won't descend into a rant or a moan as I am trying not to do too much of that! Also hope this isn't against forum rules, but I am not after medical advice, more strategy advice.

I am just a bit stuck about what to do, on a practical level. My lungs are not happy and I have really been hitting the blue in the last few days/week but it doesn't help that much. It's also been affecting my sleep pretty much every night; I keep on waking up during the night, but not enough to realise I need my inhaler. My walking speed also seems to have slowed down a little though not to the level I was once at.

I have contemplated OOH but not sure what they could do for me other than tell me my PF is fine and I'm not wheezing (actually I may be wheezing for once but pretty sure if I am it will magically disappear in the presence of a doctor lol)

Normally this seems to be the stage where you go to your GP, tell them you're not properly controlled and they possibly give you some pred, but GP is stumped and pred doesn't work. Next stop is chest clinic but probably not for a while if last time is anything to go on.

Sorry for going over the same ground again and again but just wondering if anyone has any practical solutions to this one, for now and while I wait for chest clinic! I'd ring the AUK nurses as they are generally very helpful about this sort of thing, but I won't be able to really until probably next Thursday as I am very busy on Monday, if I can get through it, and it is pretty impossible to have a private conversation anywhere at work unless you go outside with the smokers!

Anyway thanks for reading if you've got this far and sorry for being a bit of a stuck record.

12 Replies

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  • Hello again!

    So sorry to hear that youre struggling again! Im not sure but there are three things i am thinking of that might be a possibility. One is to up your usual preventer (am i correct in rememnering that youre on seretide atm as cant be bothered to check, lol!)

    There are also other add on treatments that can be used, terbutaline long acting tablets or aminophyllinne. I know that i have had these short term sometimes as well as currently long term for the terbutaline.

    Finally, i wonder whether you would have such an useless reaction to all types of steroids or would it just be the pred? Because there are various others, such as hydrocortisone (and more that i cant remember right now...) although hydro does not have such a strong effect on the lungs so you may need to take more fpr it to work. The good thing is it also has fewer side effects in general (sleeplessness, diabetes, hormone probs etc) or at any rate these effects are less severe.

    So maybe you could discuss this.with your local asthma nurse, AUK nurse or GP? I wish you all the best and hope you get the help amd the treatment that you need a soon as poss.

    Rose xxx

  • Thanks Rose! Your reply has already made me feel a bit more positive; I was kind of regretting that I got to this point over the weekend of feeling as though no-one can do anything right now, but they ought to try anyway...

    I am on Montelukast double dose and Intal 2 puffs 4x daily as these are the only things that have done much so far. But there might well be something else...I think I will try to carve out some time on Monday to ring AUK or at least the surgery asthma nurse and they can advise me whether it's worth going back to the GP. He does try to be helpful even though he is puzzled by me, so hopefully if he hears how it's been going he will have a think. It does seem to be a variety of steroids though as none of the inhaled ones worked either and Symbicort actually made me worse!

    I hope you're doing ok or not too bad and that you're getting some sleep. Xx

  • Hmmm

    So I rang the AUK nurses (from a smelly London phone box, which may have contributed to me not wanting to talk too long lol).

    Not quite as helpful as they have been previously tbh but hey, everyone else is stuck and I guess there is a limit to what they can advise over the phone. Guess I will be keeping that GP appt this Friday as I am still stumped and fed up of being so sleepy and waking up all the time in the night. She did say based on the usual guidelines I would be needing pred now and didn't know what to suggest otherwise except go to A&E to have my sats checked to stave off an attack (I questned this as I have been managing to walk around and do my normal day's activity, if a bit more slowly, and talk normally etc)

    But she did say I know my asthma best, and so far my experience has been that it makes me feel thoroughly horrible but not quite bad enough to be urgent or descend into an attack, and that if I go to OOH they will say my chest is clear and my PF is good and am I sure I really have asthma?

    Guess I will wait till Friday unless of course things do get worse before then, but ATM I can't see what

    anyone could do and really I just want to go to bed and sleep. Sorry for slightly pointless post...

  • Oh no, really sorry they couldn't suggest anything. It is so frustrating being in that in between point when you feel awful but there isn't anything else anyone can do.

    Might it help taking some time off work and resting and seeing if that gets you back to where you were before things got worse again at least?

  • Thanks! Yes I am wondering about work, though think it was moving that did it really and probably overdoing it in other ways. Otherwise I have no idea, I've never had such a run of disrupted sleep! It certainly makes me rubbish at my job, not that I was great anyway but I am quitting soon and will be moving to work from home at something I find easier to concentrate on so that should help.

    Think part of the problem is I am very very wary about seeing drs other than my GP as I've found they often have a tendency not to think outside the box and go on textbook presentation which does not help when you aren't classic. I don't have the energy to argue about PF and wheezing and go away feeling like a time waster!

  • Know what you mean about other doctors. Mine just gives me the options and lets me decide, she will tell me what she thinks we ought to do but makes sure I'm happy with it as well.

    Just a though, don't know how you're taking your ventolin, but would it be worth trying 2 puffs every 2 minutes up to about 6 or 8 and seeing if that helps? I got so sick of not being able to breathe this afternoon that I took 6 puffs like that and it helped a lot more than taking 2 every 2 hours. Obviously wouldn't do it all the time but it might give you a bit of temporary relief.

  • Thanks! I may try that though tbh I have just been taking it as and when which sometimes has meant a lot! Never even occurred to me to wait 2 hours, it doesn't last that long as it's doing the usual trick of giving up when the going gets tough. Oh how I love asthma...

  • hope things improve?

  • Cheers tyber28...nope not so far :( Going to go and moan at my GP tomorrow, sure he'll be delighted as it's been a whole 3 weeks since he's seen me!

  • I do hope things start to improve for you soon

  • ...Hello there! Sorry you feel so bad & no post is ever pointless (well, hope not otherwise Im banned!) ...just a thought, Im trying out the salt caves up here in Edinbirgh next week (no I have no connection to them lol!) because there doesnt seem to be a way to manage my asthma with preds, nebs, innhalers etc - so thought Id do my own out the box thinking! Some GP's are now able to prescribe the caves (& there is one in London) as alternative therapy for asmtha, COPD etc...?

    There are also quite often some Groupon deals for them, or first time is free type thing? Basically you sit in a salt room & breathe very pure salt air - but its seeing good reuslts for folks, so I thought Id try it :)

    allaboutyou.com/health/can-...

    saltcave.co.uk/salt_therapy...

    scotia :)

  • Thanks asthmagirl! And thanks Scotia, have heard about them but not really looked into it. I do hope the caves work for you as from this and other posts you sound way more stuck than I am! Will keep an eye out for Groupon.

    Went to GP today. He is brilliant even if he can't help me, doesn't make me feel bad about being there so much. Still prone to comment on how high my PF is (even though I said it wasn't great for me), but even though he said 'your chest sounds so normal' he then went on to say that he knows about a third of asthmatics don't wheeze and that it does cause problems - well, it wouldn't if more doctors knew that and had the same attitude! Chest clinic is being rubbish as per usual, nothing from them although he sent letter two weeks ago, so more chasing - but done by GP's secretary which might yield better results than me doing it.

    Anyway bit of a ramble, I'm so knackered...he did prescribe Atrovent which so far i'm liking though it tastes absolutely minging! I'm going to get fat on the amount of choc I eat just to take the taste away lol

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