A forum for people who suffer from chronic or persistent coughs to share ideas... these don't have any sort of official approval so you try any of them out at your own risk. I've consigned some of the more unusual ones I received to the Oddities bin on the left. I've also listed very simple remedies separately. If you're a sufferer, good luck, and please report back by commenting on the particular posting if you find success. Or just comment to the most recent posting and I will pick it up.

Tuesday, August 23, 2016

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!



Pat said...

Oh, wonderful news Nick!
My cough sounds much like yours and I've had it for 25 years. I can wait another 3!!
Good luck to you and many thanks for sharing.

Caroline Kent said...

Great news and thanks for sharing , but having to wait 3 years ! surely if they know it works they can fast track it . It must have been great having some sort of normality back , apart from the taste issues . There is light at the end of the very long tunnel... I hope ! . Good luck.

Anonymous said...

Sounds really promising Nick, I have had my cough for 6 years, this my worst year! Thank you so much for sharing through your blog info and realising so many people suffer from this! Let's hope things move forward quickly! Good luck to fellow sufferers xx

Anonymous said...

Wow at last something that might just make a difference, I have been coughing for the last 18 years so can hang on in there for another 3, thanks for the info and for sharing your experience with us xx

Peter Hewison said...

my cough started when I was about 20 years old,im now 57,at first my doctor done nothing and my mam being worried payed for me to go private at the Nuffield in newcaste,after one visit the doctor I seen refured my to the rvi hospital where I had some tests done,again they were not much help but did say they found traces of a virus in my blood test that they thought might be causing the cough,over the many years that followed this is what used to happen,id cough a lot each day and after a few weeks(3 or 4 ) id get a feeling that I was going to be sick,id go to the loo and just stand with my mouth open and it was like a tap being turned on,lots of clear thick liquid would pour out then I would bring up loads of orange acid thick stuff that tasted bad and felt like it was burning my mouth and throat,once sick id feel loads better then the whole thing would repeat again ,this went on for years then about 6/7 years ago I changed my doctor and he said it sounded like acid reflux so after trying a few meds ive bee taking 15mg lansoprazole for the last 5 years,its stopped the sickness but not my cough,im that fed up with it now and my doctor has changed again so I'm going back this week to ask for something to be done,i used to be a cook and stopped 18 years ago because of the bad cough,i worked for royal mail as a postman because I was on my own most of the day but after having shin splints I got payed off,ive had the chance to go back to cooking last week but had to turn it down because of my cough,i do two part time jobs but its affecting them also,im really fed up with the whole thing now,just wish I could have a normal cough free life

REGFORD said...

Well try this and let me know.
Sometimes this works fr me, and it did so this evening. I was coughing like a bitch and it largely stopped. This is the baking soda 'cure'.
Take 150ml of cool/cold water. Add about 2.5 ml of ordinary kitchen baking soda. Mix thoroughly till all dissolved. Taste. If annoying, dilute a bit. Conversely if too weak, just add a bit.
Sip/drink slowly over a five minute period. You may burp from generation of CO2.
You may have have to wait 5 - 15 minutes to see an effect, but so what, you were going to be coughing anyway.
If you can continue to cough, you can repeat this. I have done so a max of 3 times in one session.
I keep forgetting this strategy, yet it has always worked for me. I have coughed since forever, yet with no known cause except GERD and maybe post-nasal drip.
I decline all liability, but dilute baking soda is well known to be non-toxic, like table salt.
Other than its obvious chemical function as an antacid, I do not know of any other physiological reason why this works. I don't remember to do this until I am coughing desperately, like tonight.
Good luck.

Anonymous said...

In the US many providers give Gabapentin at low doses, three times a day, for three months. They also use Elavil in low doses. The new drug sounds promising, though.

Anonymous said...

I took part in the trial Of AF219 also. I knew I definitely had the real drug as I didn't cough once for 23 hours after just one tablet. The taste distortion was present but I'd put up with that to get rid of my cough. Looking positive at last

GRAMMA said...

Well, never heard of this remedy before. I'm going to try it too.

Fatih Karaca said...

my mother also suffers from chronic cough for at least 30 years. I've read your interview, and my mother's case is almost same with yours. So thank you so much for sharing the updates. I really wonder If you tried the baking soda cure which is suggested by Regford at the previous comment. If so, please let us know about your experience, I googled it and came up with similar cure recipes. I will also ask my mom to try one of those to see the results, and will let you know about the process :)

I live in Turkey where the folk remedies (alternative medicines in other words) are frequently used way of treatment. We have tried almost everything :) but every time at the end of the day we just ended up with insignificant improvements. Yet if we ever can come up with a nice result I will definitely inform you about that!!

Thanks again!

Anonymous said...

Sounds so encouraging Nick and hope through the required trialling the drug does get the go ahead. I'm informed I'm being considered for the next trial in the spring in London, my specialist Dr Birring has said I'm a perfect candidate having endured the cough for 16 years now with nothing working and I hope I get the real thing as like you, every element of my life is blighted by the constant coughing, gagging and wretching.

Unknown said...

If you guys ever find out what this is I'm dying to know. I've been coughing for 11 years. All tests are negative...even had them scope my lungs...nothing. Lyrica and/or gabape tin didn't work. I've been thru every test and tried everything. I'm do sick of this. I'm tired....

Hope to hear what this new drug could be?


Anonymous said...

I too have suffered from Chronic cough for more than 13 years, I have done everything also to find a cure, but nothing comes out of any visit to the doctors office. I have stumped them. I would love to try AF-219. Have you heard if they are able to prescribe this?

Anonymous said...


I haven't read the whole site, but I wonder if you tried amitriptyline?
I did have an idiopathic cough caused by a neuropathy (and also now have a small pimple next to my cricopharyngeal muscle which I expect to be removed very soon which might be causing a weird sensation in my throat on the right side).

I had this for almost 7 years, I would cough 100 times per day or more, and then have sudden attacks when I would cough 300 times on 30 minutes.

I am using amitriptyline 25mg and it works. There are lots of articles talking about the effectiveness of amitriptyline and gabapentin for this neuropathic cough.


Moomin Mama said...

Oh my word! can't believe I've found this site. I have had a chronic cough for my whole life! I'm now almost 52 and as each year goes by it gets worse and worse. It limits my social life, I hate eating out, even going shopping is a nightmare! People think I must be highly infectious and they move away. It's so embarrassing and disturbs my sleep. I'm constantly exhausted. Doctors don't know what to do for me. I hope this drug is released soon so that I can take it, it would change my life.

Elaine said...

I have just found your blog and I must let you know I read a random article in the Daily Mail - about a 14 year cough. As I read it I could not believe the similarity to all I have been through - it was so my life too. I am a 64 year old married woman with three adult children. My problems started I think with Whooping Cough at the age of 8. Through my teens I carried polo mints, one time I had an attack on a bus and people thought I was in real trouble - I got off miles before my stop. My cough was not every day when I was younger. I had several virus infections over the years and only more recently the cough has been constant. About 22 years ago I moved and registered with my current Doctors who said they thought it was Asthma and I had every type of inhaler to no effect - they are still giving me inhalers. I take Omeprazole for acid refux and still I cough all the time. I find chewing helps and I also get annoyed when I bite my own cheek. I sleep propped up as I cannot lay flat and I find paracetamol helps me sleep. I keep honey near by as I find it soothes my irritated throat. I have just finished my latest treatment of antibiotics for this year and of course I am still coughing. It is exhausting and frustrating and embarrassing. My youngest son it 30 this weekend and I am wondering if I can make it through the family get together without distracting everyone from the enjoyment of having all the family together. Still I take heart from the fact that I am not alone in my torment. Thank you for writing your blog I will follow it with interest.

Unknown said...

Hello Nick, I'm surprised I've just found your blog as I thought I had read everything there was on the internet about this subject. I have been coughing for 10+ years now, my sister started about 5 years ago, my mother has coughed for 15 - 20 and she remembers her mother coughing as well. I found a study done in Australia about genetic neuropathy as related to chronic cough that seems to explain some of our situation. We live in Canada and as I have been the worst case (coughing all day in episodes lasting up to 15 minutes at a time, everyday) I have had every test with every specialist with no real answers until travelling to the US to the Boston Lahey Clinic where I was 'diagnosed' with Sensory Laryngeal Neuropathy by an ENT specialist. I have brought that info back to Canada where the Drs here either completely disregard the diagnosis as they have never heard of it (most frustrating) to trying to help as best they know how, which has been many different drug trials to control the symptoms. As we take this journey we are finding out there is no cure only managing the symptoms. The list of neuropathic drug trials I have had is long and from what I understand what may work for one person may not for another but I will share what has worked best for me and my sister. Duloxetine has been the best case for us so far. For my sister it has almost stopped her cough completely, she will have an episode now and then but days or even weeks apart and she is taking the lowest dose of 30 mg a day. I found I needed 60 mg a day but am about 80% improved, 3 - 4 episodes a day which is like a miracle compared to what it was before. My mother was put on amitriptyline for her insomnia and found it helpful in controlling her cough about 80%. As with all medications there are side effects that are not pleasant but the good is outweighing the bad for me and my family. I hope this can be helpful for you or someone that suffers with this debilitating condition and if anyone wants to talk more about this, I would be happy to answer questions in regards to what I have learned so far. Thank you for opening this door for some of us to share information, I will be following!

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