Help! Anyone there?!

Hi lovely asthma people!

this site has been wonderful over the past few years I just wish I had it b4 when my eldest son in and out of hospital. i am very confused right now after having suffered from most of my 35 + years my consultants is now diagnosis. talked about a kick in the teeth having to put up did it and its impact on my family's for so long. until recently I was on Cetirizine, Fostair, Montelukast and Salbutamol with Pred stock for use when necessary.

fast here after increasingly out of control asthma I was referred to respiratory consultant conductedtests including mannitol challenge cardiopulmonary exercise tests for allergy sensitivity I didn't do reversibility testthe mannitol challenge came back negative and blood tests showed dust mite sensitivity only..the cardio pulmonary test showed some hyperventilation. consequently despite multiple attacks through out my life which has impacted my career and ability to care for my children the consultant is suggesting I don't have asthma, but anxiety!! I am so confused and insulted as I required 4 coursses of prednisolone over 8 months of last year end my son was hospitalized 10 times with severe asthma previous years my other son also hospitalized with a severe exacerbation. just to confuse me more he is happy too give me my own stock of prednisolone to self administer when necessary yet has taken me off the montelukast & Fostair. Get impression wants to discharge me now he has referred me to physio for hyperventilation!

Any advice gratefully received Many thanks in advance, :-)

5 Replies

  • Hello,

    This is a topic that seems to appear fairly regularly and I'm relatively new!

    You have my sympathy as I had a similar experience a few years ago. It left me very dis-heartened and actually made me doubt my self to the point where I think my asthma could have killed me if it wasn't for my husband and straight talking GP. It seems consultants like to think we hyperventilate but clearly this is silly if we are in need of meds to control symptoms. As if anyone would like to take pills and inhalers if they didn't need to!

    My advice is to ask to see someone else. I'm currently waiting to see another consultant as my asthma has been awful this year and I want someone other than my GP to give me better ways of controlling it. I recently posted about being anxious going down that route again as I couldn't face being told I don't have asthma again but Maggie HP wrote some useful comments. It may be good for you to read. Why would he give you more pred if he thought it wasn't asthma? Do you keep a peak flow diary? I find it very helpful as I'm also on Fostair and change my dose according to how well I'm doing. I know that's what I shall be showing my consultant if they try to fob me off this time!

  • Hi stay strong

    I was referred to see a physio for hyperventilation a year ago still on the waiting list. Apparently all respiratory patients over breathe because asthma attacks or breathing conditions are frightening.

    Is a national organisation that deals with hyperventilation in respiratory patients.

    You will still have asthma hence why the prednisone store it is just you need to relearn to breathe.

    I know my consultant really well and when he first told me I flipped but then I tried what website said and it actually works. Trust the consultant.

    Learn to breathe through your nose only. It feels wrong at first but after a while it is natural.

    However it is impossible if you have a cold so I discovered.

    I not seen physio yet but I can tell you personally it helps with asthma management.

  • Hi

    I've only had asthma for 2 years (I'm in my 50s) but its had a massive impact. 1 long ITU stay,ventilated for weeks, a couple,of other admissions and this year been on high done oral and IM steroids. Most recently lung function better and FENO much lower but symptoms pretty rubbish. Walking and talking really severely limited and unable to do lots of normal things

    . Was seen by resp physio last week and starting breathing retraining using Buteyko principles. Noticed a really positive difference in a couple of days and am hopeful for the fist time sinceJanuary. There is a developing evidence base around the effectiveness so I bought the self help DVD which I'm working through. Feels odd but makes sense. Asthmatics do hyperventilate by the nature of the disease,it's not a criticism, and not being able to breathe does stress us as I think it would do anyone! ,so don't take offensive if someone says hyperventilation - just ask for some help getting it under control.

    It's not the answer to everything but I'm willing to try anything if it will give me some quality of life back. Yesterday I went out with my other half, and managed to walk a way, up some inclines and whilst I had to use the control techniques managed to get back to car without being completely trashed!! I am defo going to keep ,going!

  • Hi,

    Sorry you are having problems with your breathing. It is no fun and can be terrifying.

    Over the years I have seen hyperventilating and asthma come up a lot. For the majority of the time people with asthma will be totally symptom free and not display any signs of asthma however when signs of deterioration show up there is an element of panic as with anything frightening you cannot stop anxiety occurring. One thing many people will hear and can sometimes find hard to hear is that they hyperventilate. Hyperventilation is a common part of having an asthma attack especially in the early stages when there is still some element of control and we try to get as much air and oxygen in as we fear we will end up in a state where we can't breathe. As an attack moves on the hyperventilation phase (so to say) goes and the fight for breath starts and oxygen levels drop etc unless medication is given to prevent the attack from escalation.

    Due to the fear of attacks many asthmatics can end up adopting a disordered way of breathing which feels like their asthma is bad but can be corrected easily with physiotherapy and what I call breathing lessons. I have had many spells with the physics over the years as they teach me to breathe in a correct manner.

    I have had lots of various tests over the years and defiantly the results have been different before and after seeing a physio.

    A lot of people associate a stigma involved with having anxiety or hyperventilating but this can be corrected and controlled which is great and won't effect many as badly in the long term whereas asthma requires a lot of medication and avoiding triggers etc.

    It might interesting to see if you asthma symptoms improve with seeing a physiotherapist who can look at your breathing.

    Because your mantel challenge was negative doesn't mean you don't have asthma especially if your asthma is effected when you have a cold or virus and therefore this would be why you have a positive effect from prednisilone. It might be wrorth keeping a peak flow diary and also record when you take your inhalers as well. It might also be good to see if you could see another dr or an asthma nurse.

    Hope you are ok.


  • Hi Stay Strong,

    I am currently in a similar position I have had asthma since I was 6 months old now 29 to varying levels of severity usually worse from October to February.

    Since December last year I have had 7 visits to a and e to get things under control, two have resulted in admissions and I have been on orednisolone for 4 months. I have undergone many tests ct, chest x Ray blood tests and mannitol challange which was also negative resulting in consultant not seeing me again and being told to step down my asthma treatment - I have come off my tiotropiam inhaler, I'm going for follow up care with a resp nurse in a couple of weeks and we will see about the next step I'm still on my steroid inhaler as I told the consultant I don't think it's wise I stop just yet I an awaiting to see someone in ENT to look at my vocal cords to rule out vocal cord dysfunction- they think this might explain my wheeze I'm not sure though as I also experience chest tightness have lots of mucus and have symptoms on a daily basis.

    I'm currently in the process of seeking a second opinion to find out if I have asthma or not as I belive the mannitol challange to be a false negative maybe I did not with hold my inhalers long enough or coughed too much between inhaling mannitol and breasting into the computer testing thing who knows. This whole thing has made me quite confused and I feel like I'm going crazy. But I think I have to do what I feel is right after all I have lived with this for so long and I know my own body so need to listen to it.

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