Worsening and confusing symptons

[KJ48]

Hoping someone can help as I am now really fed up! Just some history first - asthma mostly well controlled for years. Have been through a couple of changes to medication over last couple of years since problems worsening though I think this was mainly to get me on a combined inhaler. Currently on symbicort but to be honest they all seem to be similarly effective. Two symptoms seem to have developed - the first is that the symbicort seems to run out a little early. I can live with that and my AN told me to take extra symbicort or ventollin which helps. The second symptom is the more distressing which is a regular difficulty breathing in - PF normal, inhalers having limited effect. Montelukast and spiriva both tried but with limited help on both symptoms. I am fed up trying to find patterns and work out what is going on. Are these symptoms just part of the asthma? My AN seems confused! I would not describe the second symptom as feeling breathless, it just feels like I have to work hard to breathe in. This has varied in severity over many years, but the last couple of years it has been getting worse and the last couple of weeks worse than it has ever been. Is this second symptom part of my asthma being not well controlled or something else? Is there anything that can be done either way? Really down. Really tired as up with breathing problems every night regardless of how many drugs i take! Going on holiday with family soon but worried that this will just spoil the time away together. I guess I am going to need to push to go beyond my AN but thought posting here might yield some useful thoughts or similar experiences. Thanks for taking the time to read what is probably a bit rambling - it is the middle of the night and I am probably not putting things that well!

[DanceQueen]

sorry i'm no help but plenty of sympathy i have had a cough and breathless now for 12 weeks .....no one can find out whats causing it....i'm frightened and depressed ......

[xxggtt]

Hi,

Sorry to hear you're struggling with symptoms.

The difficulty breathing in and inhalers not helping sounds like it could be vocal cord dysfunction (vcd). Have you ever been tested for it? Vcd is where your vocal cords close when you breathe in (they should be open), slowing the air flow and making it difficult to breathe in. It's also quite common to get a 'tightness' in your throat, making it feel like your throat is closing up. Have you ever had this?

With asthma, the difficulty is with breathing out rather than breathing in, whereas vcd makes it difficult to breathe in. It's quite common to have both conditions, so it could be that both are making each other worse. Getting vcd under control can therefore help with asthma control too.

The treatment for vcd involves breathing exercises rather than inhalers, because inhalers don't work for vcd. I'd go back to your GP/Consultant and ask to be referred to be tested for it, if this sounds like you. It can only be diagnosed by having a camera put down your throat to look at your vocal cords.

[KJ48 in reply to xxggtt]

thanks for that suggestion - never heard of vcd! I did wonder whether I might have more than one issue. Definitely something to discuss with my GP. Thanks

[HannahBenson]

Hi KJ48....You may have a bacteria causing symptoms...to eliminate...get a sputum sample taken ... CT scan to see if scarring for airway disease...or CBC bloodwork to check out if eosinophils etc. are ok...that`s what I would do. Best of luck.

[Matman]

If you’re treatment is not under the direction of a specialist hospital Respiratory Consultant, maybe ask to be referred to one.

It could take up to 12 Weeks to get an NHS Consultant Appointment, possibly longer.

The alternative is to see such a Consultant privately, but that ain’t cheap. Best off getting a price in advance if you go down that route. Initial consultation (excluding tests and images) could be anything from around £200 to £400 Per Visit (£350 when I last had one).

If you decide to go private, try to get any tests and images done on the NHS, then take the results with you to the private Consultant, as the cost of private tests and images could be a ‘lot’ more expensive than the actual consultation). You’d probably need to see the private Consultant at least twice (second time to review results of any tests or images that he / she required you to have, in order to make a diagnosis and treatment plan).