Latest update

I'm now at a settled stage with my cough - I know what it's about, and I know there's a change coming ... just got to be patient.

I recently had a review session with Prof.Woodcock at Wythenshawe. They're now pretty much settled on the idea that my cough, and that of many other people, is a neurological condition, characterised by hyper-responsiveness of the nerves. What I take that to mean is that there's nothing mechanically wrong with any bit of my airwaves, just that it over-responds to the slightest trigger, and at the moment there's no way of calming that down - but help is on the way when the ATP drug that is still being trialled is approved and becomes available, in about three years time. (I've posted elsewhere about my positive experience with the drug trial).

The profs have recently published what's supposed to be the definitive summary of the cough story so far in Clinical Medicine, the Journal of the Royal College of Physicians.  It's called "Towards Understanding and Managing Chronic Cough."  I'm going to try to put a link to it here, but if that doesn't work please try to Google it. It's interesting. 

Don't get me wrong, the cough is still a big nuisance and blights my life often, but I'm confident it's nothing too sinister and probably will not develop that way (who knows what the future holds?).  

My top tips for coping with the cough??? No.1 is Try not to worry about it too much ... 2/ I find Airwaves chewing gum helps a lot - not the prettiest thing to be doing at my age but it keeps me lubricated 3/ same reason, drink plenty of water (and white wine and soda in a green bottle passes for water at the theatre!) 4/ Fishermen's Friends, a good old product from the North of England, also help to keep the tubes clear 5/ explain your problem to your friends - they should be supportive and helpful. 

With simple measures like that I've learnt to live with this damn cough (as has my long-suffering wife!) and so I intend to get on with enjoying myself ... that means making as much music as I possibly can with as many friends as I can!!!

Best regards to all out there in the Cough Community 😊

good news, bad news

The good news is that I have taken part in the drug trial now.... and it works!  The bad news is I have now finished the trial, and the cough is back as bad as ever - hence me writing this at 4.30 am, awake and coughing. And the bad news is compounded by the fact that the new drug as trialed won't be available for probably at least three years..

There was a very good article in the Daily Mail about the trial, written by Ben Spencer on June 13. Quote:

The new drug, known for now as AF-219, blocks receptors on the throat nerve which triggers the cough reflex, effectively muting the cough response. 

Read more: http://www.dailymail.co.uk/news/article-3638098/Twice-day-pill-silence-persistent-cough-Drug-reduced-frequency-75-market-three-years.html#ixzz4I7afpBG3

Briefly, my story is a follows  this was a "blind" trial in that some patients would be taking a placebo tablet, but I knew as soon as I started taking the pills that I was on the real thing, because it affected my taste quite badly. An hour later, a beans-on-toast lunch tasted of cardboard!

While that was unpleasant, the effect it had on my cough was equally dramatic - I would say it reduced it by about 75 per cent. 

Over the next three months the pattern of my day was this : breakfast, tastes fine, then take a pill ; lunch, taste not very good ; evening meal, taste OK, take a pill ; night time water, funny taste.

So, take a pill, taste disrupted for 5-6 hours... taste returns.

But the effect on my cough was significant - much reduced, so much so that I wasn't particularly conscious of what is going on in my chest for much of the time. I was sleeping much better, through the night most of the time. Still coughing a bit in the morning, but nowhere near as much as "normal" with me. 

My wife noticed - our morning chats over tea were not disputed by explosive coughs as much ; friends remarked on the absence of coughing. 

I must pay tribute to the team at Wythenshawe Hospital who ran the trial - Professor Jackie Smith and her colleagues, particularly nurse Terri Collier - they were all very helpful and supportive. 

I have told them I would not hesitate to take this drug if it were available...  There's lots more detail I could go into but I'll leave it at that for now - the cough is subsiding and I might just get back to sleep.

I just wanted to put this out there and let everyone know - there is some light at the end of the long dark tunnel that is our cough experience. We just have to be very patient!

    Peace and love!

           Nick

Still looking for the cure....

I thought I would post something just to keep the activity going, though I've not much to say.... my cough is still very troublesome at about the same level as ever - cough EVERY morning first thing for at least half an hour, then it eases off a bit but comes back at various unpredictable and seemingly random times during the day.
I'm just about to go on a trial for a new treatment from the Cough Clinic at Wythenshawe - it's of a drug that has been quite successful in previous small trials.  12 weeks of taking the tablets and tests - but I could be on the placebo, you never know, so it could be a while before anything comes of it.  Just have to hope that I get the real drug in there!
Will report back....

My latest news from Wythenshawe Hospital

Thanks for the interest Kate ... I had a long, detailed discussion with my specialist, Prof.Jaclyn Smith, who as always was very understanding.  At my request I'm going to try morphine sulphate again - it's the only thing really that has helped much in the past, but she is also keen that I should combine that with giving another chance to the therapy propounded by the Speech and Language Therapist (they are now offering it at Wythenshawe instead of the long journey for me to Preston), which is much to do with breath control, sipping water, and cough suppression. As a side benefit she thought it might help my singing performance too!

In addition to that, after I've undergone some lung function tests, she wants to try me on a new type of inhaler because asthma might have developed as a contributing factor to my cough problem.
(There was also mention of a drug called Gabapentin, which I think has been tried with me in the past, but it might be worth considering again because of refinements in its use).

So all in all I felt at least encouraged that I had a direction to go in, and something to work on, to give me some hope of getting rid of this plague of a condition. Prof.Smith does have a calm, reassuring manner.

She also mentioned to me a drug treatment that has been recently trialled which is yielding promising results - around three-quarters of the people who took part reported quite an improvement with their cough.  Downside though is that it causes a loss in the sensation of taste, which some people found an unacceptable consequence.  There's much more detail on this in the November 25 edition of The Lancet, which is available online. Find the website, Respiratory section, and do a search for refractory cough which is the term (new to me) that they now use to describe this type of persistent/chronic condition.   I might be eligible for a later phase of that drug trial if the other treatments/therapies don't produce results.

Back to business ... lots more comments posted

Hello Everyone ... Followers .... does anyone FOLLOW this?

Anyway, today I've posted lots of comments that have arrived in my Inbox over the past year or so - apologies to everyone who's been waiting to see their words online. There've been several good ideas passed on - please feel free to have a trawl through.

For my part, I suppose I'm celebrating (ha!) having had my cough now for 20 years!!!!!

But it's not getting any better.  I've tried various drug therapies (incl. antibiotics)  in the last year or two, a no-wheat diet (again) but just nothing works.  I did get some comfort from an article posted on an American medical website Cough article which basically says in the vast majority of cases the cough is actually nothing serious and not life-threatening. That is a very interesting article, but uses lots of big, technical words and terms that zoomed right over my head.

So, allegedly, it's not going to kill me, but as far as I'm concerned it's still BLOODY INCONVENIENT! And debilitating, and depressing, and embarrassing, etc etc etc. At the end of this month I've asked for a referral back to the Specialist Cough Clinic at Wythenshawe Hospital.  Not been there for three years so let's see if those nice boffins there have come up with anything new.

Cut out wheat?

Just had a comment from Sheila who writes: I quit eating wheat products eight weeks ago and my chronic cough of 20 plus years disappeared!! I feel free!!!!

Sheila, I would love to hear more about you and your condition, so if you see this please post again ... did you have any other symptoms/problems as well as chronic cough e.g. bloating, weight problems?  How do you KNOW it was wheat - what tests did you have? How quickly did the cough disappear - right away, or was it AFTER the eight weeks you mention? I, we, need more information...

I've been down this route, more than 10 years ago now: I had tests for food intolerance which were largely negative i.e. no obvious problems.  But I still tried a non-wheat and dairy diet, only for about 3 weeks and it was hard so I gave it up - it didn't seem to make any difference.  But maybe I wasn't persistent enough?

As I think I've posted elsewhere, I recently had another bronchoscopy, which didn't reveal anything.  So I'm again in the position of being desperate to try anything... and I might give no wheat a try.

But Sheila, if you're there, please write again???

I've moderated lots of comments today - sorry for the delay everyone!

News update

Visiting my blog for the first time in a while I notice it's just over a year since I was last on the radio!!!

Anyway, quite a few interesting posts recently under that topic...

From my point of view, yesterday I had my first, long-awaited, appointment with a Speech & Language Therapist.  The theory seems to be this... from all the various investigations I've had over the years, there isn't an identifiable cause/reason for the cough, but my "throat has developed an overall heightened sensitivity, so I cough more easily and intensely."  What I need to do is break the habit  and learn to control the cough: if I can reduce the number of times I cough it should reduce the overall sensitivity.

What the approach boils down to, apart from some odd face-pulling exercises which I think may be a bit token, is that I have to stop myself from coughing or clearing my throat by sipping water repeatedly until the urge goes, combining it with taking small sniffs and breathing out through the nose - so sips and sniffs!

I tried it when I woke at 4am this morning and it did seem to work, to an extent - I still coughed, but nowhere near as much as usual, and I wasn't racked with it and exhausted by the end of it ... I even went back to sleep.

Early days yet, I'll report back in a couple of weeks time.

Another radio show ...

I took part in the Jeremy Vine show on Radio 2 today:  a 10-minute discussion about persistent coughs with a medical expert in the studio and various contributors, including me, via phone and email.

Nothing of any great interest came out of it: the medic listed all the usual causes of chronic cough, and admitted that some people - such as me - leave them scratching their heads in bewilderment.

One woman rang to say that her cough disappeared when she stopped eating bananas - by contrast, I remember someone telling me ages ago that I should eat four bananas a day!

As is often the case with the JV show, it didn't shed any new light on the subject, and he was searching for easy laughs, like the remark about wiring coughers up for electric shock treatment to make them stop.

So, the search for a solution goes on ...

Some responses to questions...

In answer to Caroline re Buteyko: it's a couple of years since I tried that method, so I can't remember what I got my pause up to - between 20-30 seconds I think.  I persisted with it for several months, but wasn't convinced that I was getting anywhere with it and found it expensive.... though I've always said, I'd happily pay a thousand pounds for a cure I knew would work.

There was a question about where I feel the tickle?? In the morning it's often in my chest rather than my throat, but later on it can be just an irritation somewhere in my throat - all over really.

I've tried hypnotherapy recently but I didn't get on with that.

I've just been to see the Speech and Language Therapist who is going to start a course of therapy in the New Year aimed at tackling my cough "habit" and bringing it more under control.  She claims success with 60% of cases, though no-one's said the cough has gone completely so far.  Worth a try I think...

I've also come off the sleeping tablets I'd been taking - they gave me funny side effects.

Merry (cough-reduced) Christmas Everybody!