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Hi everyone I'm Elaine I'm 35 only had this just over a year and iv been in hospital 17 times I don't respond to anything and iv been put to sleep twice in 8days of eachother nothing seems to work not even my pumps or nebs I can't walk up to bed anymore I cant walk longer than 5 mins before last yr I was fit and used to walk everywhere I'm in doors most of the time iv pulled up carpets what else can I do

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  • Hi everyone I'm Elaine I'm 35 only had this just over a year and iv been in hospital 17 times I don't respond to anything and iv been put to sleep twice in 8days of eachother nothing seems to work not even my pumps or nebs I can't walk up to bed anymore I cant walk longer than 5 mins before last yr I was fit and used to walk everywhere I'm in doors most of the time iv pulled up carpets what else can I do

    Hi Elaine and welcome to the forum :)

    Your sense of frustration is understandable and no doubt its been very traumatic for you. Here are my thoughts, though no-one here can tell you what to do as we arent your doctor :)

    > Do you see a respiratory specialist? Given your situation this would seem essential and hopefully someone who is willing to work with you

    collaboratively to improve your situation.

    If so have contributing factors been checked? Allergy tests, considering gastro-oesophageal reflux disease (contributes to asthma exacerbations and aspiration pneumonia), have other conditions been ruled out which may present as similar to asthma?

    If allergy is part of your issue, have high dose antihistamines been considered, or monteleukast? (singulair).

    Have additional steroid inhalers been considered, or things like spiriva (tiotropium) - or long acting bronchodilators? (sorry you didnt say what inhalers you have)

    Has lower respiratory tract infection been ruled out?

    Have they done additional investigations?

    > Allergies - can be single or multiple and without testing you are kind of in the dark. Some allergies will present as a year round issue (ie dust mites) others will be at specific times of year (pollens, moulds, fungus etc). Its impossible to know what you are allergic to without testing as it could be one of so many internal or external triggers. Pulling up the carpets can be really helpful if you have a dust/dust mite allergy but if you havent its unlikely to make much difference. Likewise there is a common assumption that people with asthma should not have pets. I have four cats and a dog and they have no impact on my asthma as like many people, Im not allergic to them. I knew I was allergic to something but because it lasted so long i didnt think it was pollen. It turned out Im severely allergic to grass, which has one of the longest pollen seasons of anything.. lol. So I now take high dose antihistamines all year round.

    > Medications... do you use things like nurofen (ibuprofen), diclofenac and those kinds of pain killing drugs which you can get over the counter? Be aware that even if you have previously not had a reaction, you can potentially become severely allergic at any time, it is common in asthma and happened to me. I used to be fine, now ibuprofen will give me very severe asthma attacks as will other drugs of that type. If you do use them, you could try cutting them out and reverting to things like paracetamol.

    > Have you thought about giving the asthma nurses at AUK a ring? I havent done, but apparently they are brilliant at helping you and answering questions, so that might be of use to you :)

    Dont lose hope that things cant get better, it does feel that way sometimes though eh..

    Chin up

    Lynda :)

  • Hi Elaine

    Welcome to the forum.

    Sorry to hear of your situation.

    I really think you need to be referred to a chest physician / consultant ASAP.

    Also, speaking to the nurses at Asthma UK will help, and I can vouch for this as they're brilliant.

    Hope you get some decent advice soon.

    8-)

  • Sounds like you've been having a really rough time. I guess you're seeing a consultant at the mo and working with them to try to work things out. If you're not getting any improvements then a referral to a specialist place like Royal Bromptom, Heartlands or Wythenshaw might be a good next step if you've not gone down this line already.

    Have a chat to the AUK nurses to get a few ideas too. I really hope you can get on top of this soon. x

  • Welcome to the forum.

    You poor thing, you really have been through a rough time haven't you.

    I do hope your respiratory team manage to come up with something that will improve things for you.

  • Hi Elaine and welcome :-)

    I really do empathize with how your life has.changed and your frustration as I am in a similar position

    If you are not getting anywhere with local cons it does sound like its time for one of the specialist centres as others have mentioned as they will look at different and unusual bits that can be making things worse for you.

    For instance I have brittle asthma but its complicated by vocal.cord dysfunction which might be worth checking out.

    Take care and I found these forums and the people an amazing source of information and support.

    Takr care xxx

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