Breathlessness

[Flossy1969]

Hi, I'm hoping for some advice. I've been struggling with significant breathlessness since Jan when I had a chest infection. I'm hardly going out and doing anything as I get too breathless. My chest is clear and I don't have a wheeze.I'm taking Fostaire 200/6 and Montelucast and using Ventoline 4-20 puffs a day. My spirometry results are good (82%). Whats going on??? Any ideas?

[Southp]

Hi flossy it's taken me nearly four months to get over a chest infection only just gone back to work still a bit breathless as well I would go back to docs and get their advice u might need some other meds

[Flossy1969 in reply to Southp]

Hi Southp, glad you are starting to recover, some of the bugs around this year have been really hard to bounce back from. Apparently my chest has been cleared since mid Jan. The GP doesn't feel she can do anything more to help as she doesn't know whats going on.

[Robin77]

I'm not knowledgeable about anything - and don't know anything about your conditions - but I'm pretty sure that if I were taking 4 - 20 puffs of Ventolin daily my doctor would want to see me at once or would tell me to go to hospital immediately to see what's going on. Don't mean to alarm you! But think you should get some medical advice. Sorry you're having such a bad time.

[Flossy1969 in reply to Robin77]

that's rather what I think too Robin and I am really concerned. The GP has tried extra high doses of ant acids incase that was a trigger for asthma and has tried various antihistamines etc as well as steroids but now says she doesn't know what to try next. I'm not diagnosed asthmatic or anything and have only started on fostaire and montelucast since the chest infection. I'd really anticipated the spirometry test to show something. Peak flows are now much better than they were but I've no idea why I'm needing medication at all. Been sent into hospital twice to rule out pulmonary embolisms etc.

[Robin77 in reply to Flossy1969]

Referral to pulmonary specialist? CT scan?

[Flossy1969 in reply to Robin77]

Im on the waiting list- its just v slow!

[knitter in reply to Flossy1969]

I agree with Robin. Can you ring the BLF helpline tomorrow on 03000 030 555. They can advise you

[jac401 in reply to Flossy1969]

While in hospital many years ago with pneumonia, I was found to be allergic to the Ventolin. I'd been taking it for ages, and the more I took, the worse my asthma got. I was nebulised with the Ventolin, then a peak flow was done. Half an hour later the nurse asked if I was breathing better and I told her I wasn't. She did another peak flow, and it was right down below the first one. I was then prescribed Bricanyl powder inhaler, and I've never changed in 20 years, except for a very brief period when the doctor tried me on Spiriva(?). That gave me palpitations so I soon came off that and back on the Bricanyl. I have to add though, I am allergic to lots of things, mostly airborne. Worth a try with a powder inhaler though, just to check, if your doctor's willing.

[Flossy1969 in reply to jac401]

Amazing the negative side of some drugs isn't it. I spent 6 years feeling drugged up on morphine with them increasing doses etc only to find that I don't metabolise codeine properly!!!Sadly got very few memories of my kids early childhood dut to the drugs!!

[O2Trees]

I don't know how active you were before you were ill Flossy, but often when we have a chest infection we are inevitably less active than normally and our muscles get very deconditioned. So while I agree with everyone that you should speak to your GP - you probably need a medication review as 20 puffs of ventolin a day is dangerous - I also think that exercise may help, starting from where you are and building up a bit at a time, all other things being equal. When our muscles are well conditioned and we are fitter, then our muscles use oxygen far more efficiently which is likely to make breathlessness less of a problem.

You could ask your GP if you are suitable to be referred to pulmonary rehabilitation but the BLF helpline will help you think it through as knitter suggests.

[Flossy1969 in reply to O2Trees]

Thanks, that's interesting. All the muscles around my back and chest have been in spasm having put a rib out so that could make some sense. Thank you

[Hidden in reply to O2Trees]

Hope I don't come across as patronising o2trees but I do enjoy reading your responses to posts,your replies are informed,intelligent,neutral and when required supportive..regards Ger

[O2Trees in reply to Hidden]

Thank you so much Ger. But I have to say I am constantly learning from lots of members here - that's what so good about the forum

[jackdup in reply to Hidden]

I agree completely.

[Hidden]

Like yourself very breathless and at times it feels like nothing works, today dr told me to take my ventalin every 4 hrs regardless how I feel taking 5-6 puffs each time along with prednisolone I'm hoping it works as there's nothing worse waking up gasping for breath, something my specialist told me on my last visit " there is no machine or test we can take that tells us how breathless we are"

[Flossy1969 in reply to Hidden]

Bless you that sounds really tough. Hoping the steroids take effect soon and you can get a better night!

[Stumpy55 in reply to Flossy1969]

Hello Flossy1969, sorry to read about your breathing problems, we all know how aweful that is, but I can't understand your G.P not investigating now. If I were you I would press forward with medical advice. Good luck to you and I hope you recover soon🤞 please let us know how you get on? 🌹

[Flossy1969 in reply to Stumpy55]

I have been referred- its just taking 8 weeks to come through!

[Robin77 in reply to Flossy1969]

Any way at all to speed things up?

[Flossy1969 in reply to Robin77]

Sadly doesn't look like it. I've asked her to sipped it up but to no avail and I've phoned the unit. Although I'm struggling I am better now than I was before... Drugs are a wonderful thing... But I'd like to know why I need them!

[Robin77 in reply to Flossy1969]

Pity. Yes, anybody would want a clear diagnosis.

[Teyha in reply to Flossy1969]

Ring them & I did got in earlier, brilliant specialist , was then to see April got changed to June then again changed to August. So I rang again spoke to his secretary & explain that I am still on antibiotics etc , he put me in his clinic.

Now in 4 weeks having a scan , bloods test done & will get a telephone call

Get them to test for your antibodies

Mine are very very low , Doctors are giving me some injections???

I have been taking apragus with cayenne pepper & it’s helping to cough up ,

Along with cap full of cider vinegar, honey in hot water

Sorry for a long reply just hope this helps

All the best

[Bella395]

Always use inhalers via a spacer - the drug deposition is better.

[Hidden in reply to Bella395]

I agree Bella395, I had a problem getting my ventolin to work properly for me and was told by the practise nurse that I wasn't using my inhaler properly even after tuition. I was then issued with a spacer ( one with the trumpet on the end, which the nurse said I needed cos I was "rubbish at it" lol ) however, she was right, I find it easier now and it's definately more efficient. I can actually feel the meds going into my lungs.

[Teyha in reply to Bella395]

And reduces you getting thrush & agree with Bella395

[Meesey]

Hi I was a bit like you post pneumonia. I am on fostair and ventolin. I was getting breathless and still do, but I looked on you tube and started to do daily breathing and chest exercises to get my muscles working again. I had several broken ribs during the pneumonia. My referral to a consultant took 4 months and that was urgent, what a joke. So I paid to see someone privately and had a CT scan. I was diagnosed with bronchiectasis. So it comes down to trying to make the best of what we have left. Try some exercises, they will help. And I use a salt pipe on bad days.

[Flossy1969 in reply to Meesey]

Hi, thanks Messy. I have a sneaky feeling its going to be something similar. Its so ridiculous how long it takes to get assessed. Im trying to do deep breathing exercises regularly but my physio wants me to go easy as breathing too deeply puts my muscles back into spasm. Doing the spirometry the other week left me in a&e as the pain was so bad due to muscle spasm. Im trying to go out for a walk each day. Unfortunately the GP has refused to look at the breathing and ribs at the same time saying we will just deal with one problem at a time and yet they are obviously related! Hope you manage to find that balance.

[Dumba]

Hi it does take a time to get over the infections, but I have found the best solution is to exercise, even though you get out of breath, just try and build some at home sitting then standing etc.. I even joined a Zumba class, I am always out of breath and it is a struggle and often sit out for a break or just take it to my level. I have felt much better, and get as much fresh air as possible. Good luck - let me know how you get on .. Lorraine

[garibaldon]

This happened to me in my early 70s didn’t want to go out , slumped in a chair, I finally forced myself to get out , walk and keep active. I’m not saying it may work forever Yong but it strengthened my lungs and opened the lung airways. I guess in reality I wasn’t gonna I prove staying sedentary.

[Hidden]

Hi Flossy

First I would make sure your chest is clear of any infection.

Then I would ask for a treatment review because your actual meds are not controlling your symptoms.

As I read on I saw you are waiting for a slow coming appointment so you can put pressure by going again and again to your GP, nurse etc, walking centre, A&E if you feel that breathless..

You shouldn’t have to put up with this situation it is exhausting and not good for your heart and lungs in the long run.

You can always phone the BLF helpline for advice.

Wishing you well

Fran xx

[donut43]

A difficult one. See your GP straight away and explain your problem. The BLF web site has a mine of info which may help. Tell your RESP team and get advice and help. Sorry you feel so bad. There is a help line with the BLF -give them a shout they always have some good ideas. Think about nice things try not to breath rapidly but inhale pause exhale pause inhale pause exhale not shallowly but deeply. Good luck.

Dan

[Megan321]

Have u ever had a sputum text done, to check for bacteria...there is something going on

[Flossy1969 in reply to Megan321]

No, I haven't been producing anything for weeks. Apparently the infection is clear.

[Megan321 in reply to Flossy1969]

I also had normal sputum, clear. When u say your chest is clear does that mean that u have had a CT.. I don't see any diagnosis of anything...CT will show up what's going on....they shouldn't be giving u anything without a proper diagnosis. Get back to GO and ask for the proper tests, including a referral to a pulmonary specialists