Completely lost, not sure what to do [not emergency]

Not sure anyone can help me with this - I seem to baffle medics so not expecting miracles [btw if I feel things are getting really bad I WILL get help of some sort]. I just find it very hard to judge what I have to put up with and what I ought to do something about when I can't go by the usual guidelines. plus breathlessness is *usually* chronic and doesn't turn into attacks - or hasn't so far.

Just a bit stuck and wondering what to do if:

*chest is acting up a bit more than usual - the 'corset' feeling I mentioned and I can also tell things are going on because my ribs are also acting up - not trying PF again! At least I can take ibuprofen for that but it's a sign things are active.

*PF is no use. It never is.

*No point seeing GP, she can't help, she has said she has no idea what to do with me.

*OOH generally not helpful unless it's urgent, which so far it has never been - just makes me think it might be soon but then (luckily, I know) doesn't get further.

*Cons. appt, when it is remotely possible I might at least get my hands on some drugs (of the legal, sanctioned variety of course, not planning to nick them from the cupboard lol), is 1 month away. I am seeing if there is any way I can get it brought forward or possibly try something before I go but not holding my breath, haha. GP vaguely said she might get in touch with cons. a couple of weeks ago and I rang her secretary today who said GP hasn't done it so far but will ask her about it, but don't know if she will or if it will do any good so I am assuming I have a month to wait unless I hear otherwise.

Does anyone think the AUK adviceline would be able to give me any guidance on this or is that only for 'real' asthma? I know it's better than being brittle and in and out of hospital struggling like some but honestly I don't know what to do and no-one seems to be able to advise me given I don't fit any normal criteria - everyone always just says 'wait for your appt, see what tests say' (zilch, so far) but no-one ever tries to give me any advice about what to do while I'm waiting.

I hope this hasn't been too much of a rant. Just hoping with all the combined knowledge on here somebody might be able to point me in the right direction.

15 Replies

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  • Hi,

    Having only gone through the whole breathlessness thing for a short while, you have shed loads of sympathy from me (I think you've been going through it for a lot longer). I know its not critical/brittle etc but I found the slow steady battle difficult to deal with. Since my asthma kicked off again, the last few weeks of not wheezing have been the worst.

    I can't think of any suggestions. Sorry to be so unhelpful! At least you're not alone.

    I would call the nurses here. I called a few weeks ago just to ""talk to someone who'd understand"". They were great, I felt loads better afterwards. They certainly know their stuff and maybe able to give you some advice.

  • Thanks TS, sympathy is good and knowing someone else is in the same boat - though of course I wish neither of us were! I hope you're getting some control and answers about how to deal with your stroppy lungs - a few weeks is more than enough to get you down.

    I think I will call the nurses here, hopefully they will be able to offer some kind of advice even if only 'tactical' ie should I try my consultant's secretary or wait to see if GP does?

  • Oh Philomena, I really feel for you. It must be so hard when the medical profession can't make up its mind what's wrong with you. Please keep asking until you get some real help. If it's any use to you, I asked the Asthma UK nurses for some information earlier this year and relayed their response to my GP who pretty much sat up and took notice, even though I'd been saying exactly the same thing for weeks!

    You must be feeling very fed up and unhappy by now but don't give up. If you keep asking, someone will figure out what's wrong with you.

    Have a big hug.

    xx

  • Hello Philomela,

    I just read your post then looked at a couple of your previous posts (but only a couple so excuse me if I ask questions you've answered a million times before). Now this is from a couple of med students so we could (very easily) be totally wrong. I was just showing them the boards and came across your post so thought we'd try and give you a response! Firstly defs phone the auk nurses - they are fab! secondly- go back to your GP they have a duty to help you and to do everything they can even if that is only chasing the consultant to get you appointment bought forward!

    1) what asthma meds have you tried? whats your best peak flow and your worse? what are your main symptoms other than breathlessness?

    2)have you been tested for anemia? thius can cause feelings of tiredness and feeling faint/dizzy (which you mentioned before)

    3) what heart tests have you had done? guessing you've been checked for an arrythmia? and pericarditis?

    4) do you know what triggered the breathlessness? and how long ago? have you had a ct scan? if so did it show anything?

    5) Have you had resp physio? it's amazing!

    6) have you ever had blood gasses taken? (normally taken from your wrist or your ear lobe) to look partic at your co2 levels as they may help decide if theirs an element of hyperventilation or if you could have chronic hyperventilation.

    um think that's all.. well for now! Sorry for all the questions, just trying to think of what could be causing all your problems..Sorry your feeling so rubbish... and please don't be afraid to go back to y our GP.

    Best of luck

    Ally

  • Thanks Annista! Hope you're doing ok at the moment. I'm definitely going to ring the helpline on Thursday (my day working from home, impossible to talk in the office which is a pain) - good to know I might be able to use some of their advice if I end up trying to persuade them I need earlier appt! What I really want to avoid is waiting for a month, then going and having them say either 'oh, try this medication' (couldn't they have done that before I go?) or 'sorry, we have no answers' so going armed would be good.

    I do feel a lot like a patient from a House episode. If he actually existed and I had the money I would be legging it (well, moving at a stately and sedate pace) to Princeton Plainsboro!

  • Ally - thanks! Just saw your post after I posted my last one - don't think anyone's asked me those questions, at least not on here, and appreciate the interest. Sorry if this is (really) long, trying to answer fully!

    1) Ventolin, Bricanyl (both worked for childhood asthma), Clenil up to 800mcg daily (I think) along with Ventolin then Serevent added, then changed to Symbicort (alongside Bricanyl), then Spiriva 18 mcg daily (on its own). The Ventolin seemed to work once as my PF jumped from 500 to 660 after about 6 puffs in 3 mins (I think, can't remember exactly). Best ever was the 660, worst recently about 490, usually hovers round 530-540, though last year even when breathing was much better it was generally lower and went from about 350-460 (this is from memory but reasonably accurate, my charts are all downstairs)

    Main symptoms: the breathing (chronic, worse in morning and evening but mostly throughout the day now, triggered mainly by cold air, humidity and practically any form of movement, still walk around but very slowly), cough (now for 9 months) tight chest like a corset on occasion (and more and more recently), airways feeling bit inflamed sometimes. The dizziness for last few weeks after the exercise ECG but now controlled by Buccastem 3mg twice daily. Not sure that's related, it's very recent. Oh, and fatigue if I overdo it eg walk round too much in the day, and ribs have been protesting recently; also told by physio I'm seeing for something unrelated that I've been overusing accessory muscles of respiration. Rarely if ever wheeze, if so is usually at night when trying to sleep - no doctor has yet heard one.

    2) Yes, had full blood count at hospital after the treadmill test when I got dizzy - normal, everything was.

    3) Referred for heart tests by resp cons because of tachycardia at rest. Echo, resting ECG, 24 hr Holter, exercise ECG - all normal. Only managed 3 mins 20 secs of Bruce protocol as got too breathless to carry on (what I managed was normal). Dizzy after. Think they were looking for arrythmia mainly, pericarditis I'm guessing would have shown on echo?

    4) My theory, which seems to have been blown away by the non-reversibility of lung function tests (Ventolin just does not reverse anything with me generally except the one time - see above) was that having swine flu (this was not confirmed but I'm pretty sure - it was certainly some kind of flu!) in Aug 2009 kicked off mild childhood asthma again as breathing issues (back then just the breathing) started after that. Then I acquired the cough and worsening breathlessness Oct last year after having a cold, then it kept getting worse and things like (possible?) chest infection - mild - and trying to do a 5 mile walk in March (stupid) really had an effect.

    No CT scan - yet. My consultant wasn't sure yet if it would be helpful and didn't want to expose me to the radiation until she thought it would definitely be useful.

    5) I have seen a resp physio twice but just got breathing exercises which didn't do much - I knew the basics from singing anyway though always helpful to practise. I think this may have been because the first consultant I saw (who discharged me in November saying cough was post-viral) had diagnosed hyperventilation and asked physio to show me how to breathe properly so no other physio done.

    6) Never had blood gasses done - just the questionnaire re hyperventilation. I don't know what the score was - I never get any of the tingling and GP thinks dizziness is not that because I would have got it before if so.

    Wow, what a marathon! Hope that makes sense, any input appreciated and hope it's useful/interesting for you guys. :) Feel free to ask me anything more if you want more info.

  • We were pretty bored last night, but now it’s just back to me! Okay, so it does sound like your PF has some difference, but the negative response to reversibility would lead your consultant away from the idea of asthma. Have you been seen by an ENT? They can check for a number of conditions which could be causing breathlessness such as VCD (vocal cord dysfunction), which is when your vocal cords close up and make it difficult to breath, it imitates asthma in the symptoms the patient gets but doesn’t normally affect oxygen saturations (except in very extreme cases) and you wouldn’t respond to asthma medications.

    How long is your course of Buccastem?

    I doubt it is Pericarditis as pain would be one of your symptoms and it doesn’t tend to change on exertion. Also I’m pretty sure the cardiac consultant would have checked for this. Having a clear exercise test, ECG, 24hour test and Echo is positive news and rules out most heart associated problems.

    I think perhaps a referral to a resp physio would be a very good call, you should not be using you accessory muscles to breathe all the time, and a course of resp physio could help you to correct this. Maybe you could and ask your gp for a referral? Have you tried doing Yoga? This is meant to improve your breathing technique, I saw you are a wind player (me too!!) which is positive but even with this we can get into bad breathing habits just like everyone else, so may be good to have the physio and try some yoga (anything’s worth a shot, right!?)

    I suspect your consultant will perform a CT scan if nothing has come to light yet, they will look for any underlying infection which could be causing your symptoms, especially if it was all triggered by an infection. Another thing might be to present yourself to a and e of your symptoms get worse at any point, so that they can do some tests while your symptomatic, such as an ABG (not very pleasant but very important).

    Sounds like they you’ve been through a lot of tests recently, but hopefully you will find out what’s going on soon. I think I’ve probably had every asthma test going (or near enough) so understand what it feels like to be prodded and poked at every direction.

    Best of luck

    Ally

  • I can see why you are fustrated!

    I like House too - bit why does Lupus come up so often??

    Just a couple of questions- When you had spirometry were you actually symptomatic at the time? When you measure you peak flow, do you do it 3 times morning and night? If so is there much variability between the blows, and is there any pattern?

    I am sure that House would think you had caught some weird and wonderful tropical disease or had funny shaped red blood cells! Have they checked for these???

    Hope you get some answers soon.

    Bryony

  • oops forgot to say if you ever do make funny sounds or wheeze you could always record it so you can play it to the doctor at your next appt.

  • Cheers for more replies guys!

    Bryony - hehe, don't know, they propose it every episode pretty much! It actually was once as well... Glad House won't be poking around my stuff though looking for tropical diseases.

    When I was tested think I was symptomatic, yes - it was early afternoon which is normally the 'best' time but I had tried to hurry for a bus - bad idea. It wasn't as bad as it can be and don't think I was tight-chested but I was pretty knackered. Hard to tell, I'm symptomatic pretty much all the time these days and was getting that way back then. Hadn't thought of recording, good idea, though don't know if I have anything to do it with that won't contribute its own wheezing...

    Don't measure PF regularly any more, but when I did 3 times morning and night, lots of variability between blows - I seem to have terrible technique for that and for lung function (which had to be repeated this time basically because the first set made no sense) Not sure why - my inhaler technique seems to be ok judging by the shakes I got from it! Pattern - not sure, cons noted the variability (have checked and it's 490 lowest-620 highest in March and looks like a really sharp mountain range, with the odd flat bit where it stayed the same morning/evening for a few days).

    Ally - should have said, they suspected VCD, did a bronchoscopy and ruled it out. Was a possibility though I got the impression VCD mimics asthma attacks and this is more chronic - never had what I'd call an attack based on others' descriptions or the AUK guidelines.

    Glad to hear prob not pericarditis - do get sharp pains in general area but same all around ribs, have asked GP and she thinks it's costochondritis caused by all the breathing effort.

    Buccastem is 50 pills so 25 days. Stupidly forgot to take it this morning which has shown me while it does a great job of concealing symptoms it's obviously not fixing whatever is underneath, which is annoying though glad to have relief from the symptoms. Maybe it will just go soon anyway, but if I end up needing a refill will have to see GP for prescription anyway though she has no idea what it is given heart tests normal!

    Can GP refer to physio? Was referred last time by cons, could be worth a try if they can do more than last time - I will be mentioning the muscle thing to cons.

    Would be good to have some tests while things going on - problem is they're ALWAYS going on these days! I seem to feel breathless pretty much all the time, though worse in the evening esp in last few days, and I have absolutely no idea when it's appropriate to turn up at A&E given I can't go by the asthma guidelines. I tend to feel if I'm managing to do stuff and get through when struggling then I don't need A&E or OOH - so far it's never turned into an outright 'attack' so I always think they're just going to tell me it's not urgent and I should wait for cons.

    Thanks so much for all your input, it really is helpful to have sympathy and suggestions!

  • have been thinking about your lung issues...have you been checked for all types of anaemia...some of your symptoms made me think of that...not medically trained but was just an idea...you probably have had this checked out but was an idea. Hope you get something sorted

  • Thanks Honey - think they have checked, they did a lot of blood tests at hospital after I started feeling dizzy and they were normal - don't know if there's anything exotic they wouldn't have tested for though.

  • Feel a bit more proactive

    Thanks for all the input and sympathy everyone! Rang AUK nurses today, they were very helpful and if nothing else made me feel like I'm not just exaggerating and that it's reasonable for me to try and get things moving.

    The nurse suggested I go back to my GP as she would be able to prescribe me a short course of pred which could help and might also be diagnostically useful as if it responds would suggest asthma is involved somehow. She also said I should make sure my GP knows the impact it's having on what I can do eg taking almost twice as long to walk to work as when I started there - so booked an appt with GP for Tuesday, earliest I could get with my usual GP.

    I have also, following the nurse's advice, rung my consultant's secretary to see if there are any cancellations - there aren't, but she said she'd show my notes to the consultant and tell her I was struggling and going to my GP and they'd see what could be done. (Wanted to know if my GP could do anything, when I said she was stumped and mainly left it to cons she said 'yes, they tend to do that' lol)

    Only thing the AUK nurse couldn't help me on - and I wasn't really expecting it - is the question of when to look for urgent help given that my reliever never works so can't really use that as a guideline. I knew there aren't any easy answers to that one given my position but thought I'd ask!

  • Glad the Asthma UK nurses were helpful. I am impressed that you can get an appointment with your own GP so quickly- we would have to wait weeks!

    Bryony

  • Bryony - you'll hate me, but next Tuesday is actually quite slow for here! The amazing EMIS system helps, but in general they don't seem that booked up. I think it must be because we seem to have a lot of GP practices and GPs here (maybe something to do with the university?) - am shocked how long I've heard waiting times can be in some places though, almost makes it pointless to have to wait weeks for a GP appt.

    The hospital is less good - London was mostly great, very quick, but here they serve a large area and a lot of people (many of whom seem to have resp conditions!) so you have to wait forever just to get the letter. Also we have no walk-in and OOH is not in the easiest place to get to - so ups and downs.

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