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British Lung Foundation
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Help please.

Today has been a bad day again. I've been breathless all day, tried everything to sort it without success. Done breathing techniques, controls, chest clearance, exercise without success. Can anyone advise me please.

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It may be hay fever effects as pollen always ales e breathless

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I've never had hay fever before. Would it show itself at my age?

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I never suffered until two years ago. Coinciding with my lung deterioration

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My deterioration in recent months has been scary. I am getting worse by the day but don't know why.

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The pollen count is rather high with tree pollen. Just a thought. I had never suffered with hay fever until the last few years. Antihistamine does help, without it my breathing is as if I have an infection, I missed taking it last night and have really suffered today as I have been outside on a trip to the hospital.

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I don't know how I would know about hay fever. I've never suffered from it before.

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Hi patty. You. Have to stay calm acccept it when you bad. It's part of this illness. Time to time we get. Bad. The answer is. Trying to lessen the amount of times we get ill I could tell. Lots of things to try. But the most important one is. Don't over do it but. Do. Push yourself. It's easy when you have someone around. I know it's almost impossible at times to be on your own but don't sit about for to long from time to time have stand up. Walk around other most important thing is in your mind stay positive. Any thing that helps lift you. I know it's a tough illness. But it cannot be changed for now it takes time. Hang in there. Things can and will get better. In time you will. Cope better Take care. Paul

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Hi Patty. Paul has given you some great advice and I second everything he says. If you don’t relax and accept the bad days then your stress will worsen your condition so it’s most important to realise, yes, today I’m struggling so much, but it will pass so I’m going to relax and wait for a better day........ it will come honey and I know this from my own struggles.

Just take the best care of yourself now xxx

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I wish there were a tablet that could improve positivity! Prognosis doesn't seem very good at present.

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Patty Ann you said you paid for a consultaion. I did the same thing last yr at the Brompton for. A 2 nd Opinion on LVRSurgary what did you pay £330??

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I paid £125. Bupa would have charged me £250, I went directly to a private hospital and asked for a respitory specialist to see me. I don't have health insurance. Any additional blood tests, x rays etc would have to be paid extra.

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Hi Tricity. How do you go about getting a private consultation at The Brompton, and how do you choose which consultant? Thank you x

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Hi. I really was clutching at straws I reallly tried to get. LRVS. Then it was blocked. And the Dr I had. I from start not. Good. I had 5 yrs at Barts. And. When went Brompton he knew. This. Woman Dr. And it was like what she was not good. Enough. So not a good start But, If you want to go private that's up to. You. It was really easy. Go on there site. And tick. Private. But they charge like. £1000. Per. Hour.

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Thanks for that - really helpful - but up to £1000 per hour ubelievable!!!! I thought possibly half that. No way could I called those fees. Thanks again for the info Tricity.

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My partner contacted a local private hospital and asked whether a respiritory consultant would see me privately. We made the apointment and were told it would be £150 just for the consultation which seemed very reasonable to see a specialist quickly. We had to ask my GP to refer me and send my records and that was the only hold up in the whole thing. My GP will act on the advice of the consultant when he gets the report.

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That's a really good fee patty-ann. Thank you for the information. Will try that if I get nowhere in the system (I keep getting fobbed off) so thanks very much for that. I hope the improvement in your breathing is continuing with new antibiotic and diazepam. All best wishes xxx

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Try and be as calm as you can and do pursed lip breathing if possible.

Wishing you a better day tomorrow. Xxxxx

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I'm doing breathing controls and staying calm. My lungs don't feel able to take in any air no matter how deaply I breathe.

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Hello Patty

I just wondered what is your illness, i am sorry to have to ask you this question

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I have severe COPD.

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ooh ok thank you ...my husband used mullin leave tea that helped him breath easly

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If it doesn't ease do give your respiratory nurse a call.

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If you reliever inhaler is not helping and you are still struggling, can you ring 111 for advice . They are the experts .

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I've been using the salbutamol all day, not sure whether I'm overdosing on it or not. 111 usually send medics as soon as they hear 'breathing difficulties'. I just need to know if I can take more steroid than the prescribed 5 mg that I prescribed. I can't tell whether I have an infection or not. Temperature seems OK and Oxy is reading 91.

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I don't have a respiratory nurse! I haven't been given any phone numbers for help or advice. I feel as if I'm battling on by myself most of the time. Self medicating without really knowing whether I should or not is worrying. In emergncies I phone 111 and usually end up with medics taking me to A&E.

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hi patty my advice take 30 mg of the steroids for 5 to 7 days with a bit of luck that will sort out any inflammation and maybe help your breathing. I know it is self medicating but is only for a short time and is what you have probably done many times before and until you get some definitive advice should not do any great harm I say this as I am currently in a similar position no advice and problems so am trying (after yet another course of antib's and steroids trying a reducing dose of steroids to see if I can get to some sort of mainenance dose good luck take care xxx

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I'm taking your advice and trying the 30mg steroid with my antibiotic. I hope to see an improvement soon.

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good luck let us know how you get on xx

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Will do.

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Hello Patty-Ann, firstly, it sounds like you are anxious therefore you will breathing harder as your whole body will tense up. So try to calm yourself down slowly by thinking of nice things like beautiful scenery with lots of lovely colours and a waterfall , just get yourself into another calmer mindset ok. When you have done this you can remember what you have done. I do this every single day and it works for me patty. Stay with us and we can work together. 🌹

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Yes, breathe in peace, breathe out tension; breathe in joy, breathe out worry; breathe in peace, breathe out fear.....

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Thank you. I've been prescribed 2mg Diazapam now. I don't like to take more pills but it does help.

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Sorry to hear Patty-ann thats horrible for you- have you tried some distractions like lustenung to music? I think the main thing to remember is try not to panic as it will make you hyperventilate- is there anyone who can sit with you to chat?

Please let us know how you doing later? I will say a prayer for you if you want me to -

Love Janzo

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I. Find standing in the kitchen reading a paper with radio on

Today my breathing not been good because of damp weather. Reading and breathing in and out slowly.seems to help

I have severe copd. My husband is brilliant and find its best to leave me when breathing bad but keeps an eye on me.

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I had a bad night, woke up at 2am and breathless. I managed to get a GP appointment this morning so now have a new antibiotic and nebuliser. I took my first diazapam today and it has helped me to calm down.

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I'm glad you went to see your G.P patty-Ann, also pleased the doc has put you on nebuliser and other meds. You should start to feel a lot better now hopefully🤞take care of yourself and you know you always have us to turn to. 🌹

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Thank you, it's like having a big family of supporters on here.

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I tried talking myself out of panic and calming down but I think the underlying anxiety wasn't helping me so my GP has given me a low dose of diazapam. As far as praying for me is concerned please go ahead, I need all the help I can get!

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Ah bless your heart patty, we all know how scary it is when you are fighting to breath and at that time all common sense goes out the window. So pleased that you are calmer now, that's good. But while your relaxed it's a good time to practice your breathing that way you will get into the routine of it. It's good to have you with us , patty, take care of yourself ✋️😊

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Thank you and everyone else for your help and understanding.

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We all help each other patty-Ann by being supportive, I've had so much comfort in the knowledge that people genuinely care and listen to you however big or small the problem is. It's important to us so it matters. I take it you are feeling a lot better now🤞 and your new meds are suited to you🤞 take care and stay Intouch please 🌹

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I am feeling less anxious now that I'm taking the diazapam and you were all correct in the advice that the anxiety was making my breathing worse. I'm beginning to feel a bit better on the new antibiotic. My chest seems clearer and the rattling in my throat has all but gone now.

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Oh that's good I'm pleased for you patty, it's hard as we all know to try and stay in control of this dreadful illness, but as long as you try not to get stressed you will know the difference. Stay Intouch patty and stay well 💐

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Whenever my breathing is bad my doctor prescribes 60mg of steroids per day so I definitely think you should increase your dose.

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Can it be taken with ciprofloxacin? That's the new antibiotic I've been given.

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Most definitely. I have just taken that exact antibiotic alongside 60mg prednisolone daily for a week and my breathing is now fine again xx

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I'm starting too feel a lot better now. It's not right that we all have to suffer for so long before we get the right sort of help. I had been struggling on and off for months without being able to get past reception and a nurse to see a proper doctor!

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So pleased you are feeling better. It s terrible that you had to wait so long for treatment.... which country do you live in?

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England.

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Wow , poor you. What can we say what has not been offered already. Definitely keep calm. Use gentle relaxing music Coffee helps use your flutterball and aquapella . The breathing relaxation techniques at BLF would be a great help. Get the GP to give you some help. The RESP team are on call to hep in situations like this. Good luck

Dan

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Hi Patty-ann

Very sorry to hear about your breathing problems. I have pulmonary fibrosis which caused me immense breathing difficulties. I too, was left without any help at all, the chest consultant cancelled my long awaited appointment, and the respiratory nurse was very dismissive and unable to help me with huffing and clearing my chest. I battled alone for three months, the gp referred me to the consultant, and there is a long waiting list for pulmonary rehabilitation and respiratory physiotherapy. I have a Flutter, and carbosisteine tablets to thin the mucus, but spent at least half an hour, four or five times a day, plus all night, every three hours, trying to huff and cough and clear the mucus. this left me breathless and panicy. I had a ventolin inhaler with a spacer, because I couldn't get enough breath to breathe it in normally. So, I paid for a private consultation. He was brilliant. I told him I had had two lots of steroid tablets which had helped me. He contacted my gp and arranged for me to have a steroid inhaler . It has made a HUGE difference. The mucus has reduced to the extent that I can simply cough, and it clears and I am not breathless any more. All your symptoms sounded so similar to mine, that perhaps my remedy will work for you. Is it worth a try? Good Luck

Lynne

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The report from my private consultation hasn't got to my GP yet so I'm waiting for his advice to get through. I'm hoping that between them they will be able to improve my quality of life and at least make it more bearable.

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Hi..I spent about three years with cough nose rnning as well as breath problem.particularly during night faced fast pulpitation and sleepness...Doctor sad its allergic asthma.. I used allergy tablets n inhallers..as regards inhaller if used once you will increase its use double and daly..Oh my God...In brief I got allergy shot 15 days before...I felt mysefl easy..but phlegum was not coming out..so I daily chewed small piece of ginger. Now my cough watery nose heart pulpitation night sleep are fine..please dont create panicwhen have breath prob, go to fresh air slowly take deep breath from nose and push it from mouth...Hope you will feel confortable...Its my own experience..may be helpful to you, too.

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I do find that fanning my face and nose helps me. The cool breeze is easier to breathe in.

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Just got on and wondering how you were doing patty-ann? I hope you are breathing better and have gotten some rest.

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Didn't sleep well at all last night. Up at 2am breathless, got back to sleep for about an hour at 4am then up again. Managed to get an urgent appointment with my GP so hope a change of meds will help.

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Hope all goes well at your appointment.

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Beginning to feel a bit better today but still very weak and spent most of the day in bed. I'm giving myself the time it needs to recover.

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Hope you are feeling better Patty snd if not that you have rung for help. Its difficult not to panic when you can't breathe. It sounds like you are not being given enough support and help from the medics and you must let them know that you are struggling and unsure of how to medicate yourself. I was recently given a steroid inhaler after struggling for 8 months with no real solution. I feel 100% improved, I feel human again. I was so low before. So I really hope they can come up with something that will help you too. This doesn't just affect you physically, its emotional too so we all really need that support. Please keep in touch and let us know how you're doing, we're all rooting for you. Love and hugs x

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I read of so many different treatments on here that it does give me a bit of hope that all is not yet lost. I just need medical advice sometimes about the tablets. I'm not a pharmasist and I don't like having to self medicate without the knowledge of what the drugs do.

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Hi Chloe

The same as you = I was recently given a steroid inhaler after struggling for months and feel hugely improved - what condition are you suffering from Chloe? I have pulmonary fibrosis and cannot believe what a difference the steroid inhaler has made! Has your doc advised you on how long you can stay on it and if there are any side effects?

Regards

Lynne

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Hi Lynne, I still haven't been given a proper diagnosis. First they said it was COPD but I didn't improve at all on the inhaler they gave me, was ill all the time. The only time I felt better was on the steroid tablets when I was given a short course. COPD/ Asthma overlap was mentioned or bronchiectasis as I was so ill all the time. Did peak flow readings for two weeks and the doctor decided to try me on Fostair which is steroid and long acting bronchodilator. I can't get over how much better I feel! I actually mowed the lawn the other day! Go back to docs in a couple of weeks so he can see how I'm getting on. Maybe he'll tell me what it is I've got some time soon!! Its been 8 months and he hasn't referred me or anything, its been awful. At the doctors every other week. So don't know yet about how long to stay on it it or side effects but I'm happy to keep on it. Sorry for rambling reply. So glad its made you feel better too! It makes such a difference when you finally feel well again doesn't it.

All the best, Chloe x

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Hi Chloe

It's great that there IS stuff out there to make you feel better. I don't know how long I can stay on the steroid inhaler but am happy just to feel normal, like you, I don't know if there are any side effects, and it might be a case of sticking my head in the sand, but I'm feeling better and that's all I care about at the moment. Id felt dreadful earlier in the year, and even thinking along the lines of "well I know how I am going to die"! Keep well, and keep in touch, If any different happens let me know, I am interested. You mowed the lawn - you'll be up on a ladder painting the windowframes next!!

Lynne xx

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I know exactly what you mean, I felt so ill I thought this was it and I would never feel better. I don't mind admitting I even had thoughts of not wanting to carry on feeling like that. So this is such a relief to me, as it is to you. I'm really not worrying about any side effects at the moment. I will keep in touch, I'd like to hear how you're doing too, so I've added you to 'following' if that's ok so I can keep up with how things are with you.

Take care, hope you keep feeling well.

Chloe x

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Im so glad you felt like that - "not wanting to carry on" - I felt so guilty feeling those thoughts. Yes, let's not worry about side effects - live for the moment girl!! Yes, "following" is a good idea, I would like to keep in touch, and let me know if anything changes for you? I'll do the same

Lynne xx

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Hi patty-ann. That sounds so like when I have a non infection type exacerbation. When it's so bad that I can't stick it out, I take a short course of Prednisolone at 30mg per day for 8 days with no taper. It always quickly works......until the next time.

Hope you get sorted, we know how horribly torturous it is.

John.

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I'm always wary of taking more steroids, I've heard such nasty stories about the side effects but I do agree that in the past they have really helped. I might have to try your remedy because at this stage I am very confused.

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Just to say that it isn't my remedy, it is a rescue pack of steroids and Doxycycline prescribed by my doctor. I only take both if it's an infection exacerbation, but just the steroids if a non infection flare up. A short course of 7 to 10 days requires no taper down, but more than 10 days has to be a course via my doctor, finishing with a tapering down dose.

John.

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Thank you for that, I will try it if I don't get some improvement with this antibiotic. I'm not really sure that I have an infection, GP didn't listen to my chest but listened to my coughing fit.

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Would have thought your doc would have scoped your chest and back, but hope you get better quickly.

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I am a day late reading this - All I can add is Paul and others are right. Anxiety will make matters worse. the sad truth is, with these conditions you get good and bad days...So long as you can cope, the only way is to accept your condition and accept there will be bad days.. If you are not coping and your condition is getting no better, see a doctor or an Asthma Nurse. Hope you are feeling better by the time you read this..

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Finally got an urgent appointment with a GP today so I'm hoping for some improvement soon

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How did things go with your GP? Any help offered?

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I saw a GP whose mother has the same condition as I have so he was very empathic and helpful. He is waiting for the report from the private specialist but changed my antibiotic in the mantime which seems to be helping. I'm also taking the diazapam for anxiety which has calmed me down and stopped the panicky feeling. Yes I'm feeling more positive about improving my quaity of life now. Thank you for your interest.

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Really good that you now have that particular GP, you will feel better just knowing that you now have proper professional support. :-)

Best wishes,

John.

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If you are still struggling go and see your gp ask for an emergency appointment and don take no for an answer. Good luck I hope you are feeling better soon

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Thank you, I did that on Monday and now on different antibiotic that seems to be helping. I'm feeling much better but still weak.

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HI patty-ann. I've been reading the posts regarding your health problem and would love to hear how you are now? I was wondering which antibiotic the dr put you on that helped you and if you still get the diazepam ? I know it's so scary when struggling to breathe and am hoping your all sorted now . I was told by a couple of chemists independently over the years that if Ventolin is used randomly it can make breathing worse instead of better. Over use of it causes the heart to beat faster and you get the shakes. That happened to me. I shook so badly I couldn't write and had to ask someone to address a parcel I was trying to send in my local post office ! THe symptoms we are trying to ease are accentuated by overuse!!

Hope all is well with you now . :))

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I’m glad to see you are feeling much better.

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