My story so far....

[Texet56]

July last year I had was seemed like a very bad sinus infection and dreadful cough. I had difficulty breathing and was very unwell. Antibiotics didn't work. I also get acid reflux and was on Lansoprazole 15mg. Anyway it's now February and I still have this. The coughing is horrendous and sleep is just something I used to have a night. I have to constantly clear my throat and think it maybe post nasal drip but I am guessing as I don't know. I wheeze all the time and it sounds like a symphony when I lay down. My lanzoprazole has been changed to Rabeprazole 20mg but the acid is still a problem. The last few nights I have been woken my acid squirting at the back of my throat and then my airways close and I need to use a ventolin inhaler. I had a chest X-ray that was clear in September. Saw a consultant two weeks ago who listened to my chest and said it seems it may just be my sinuses and put me on clarithromycin 200mg for 6 weeks and I have a CT scan on my sinuses tomorrow. Day 14 of antibiotics and I feel worse not better. Today has been a difficult day in terms of breathlessness and I ended up at A&E and I now have a seven day course of steroids. My instinct is that the problem is actually coming from my stomach acid but I am guessing. Coughing makes me feel as though I am being turned inside out. Today I am feeling pretty desperate. Wonder if I will ever get any answers.

[Texet56]

Oops I have accidental put my pic on the wrong post, please forgive me as this was my first post. Any advice on how to remove it? Eek

[mrsmummy in reply to Texet56]

Image removed. If it happens again click the little v at the bottom of your post then click 'Edit'. That takes you back and you can change any of your post and resubmit it.

[Toci]

When my acid defies the lansoprazole I top up with Gaviscon advance. Try it at bedtime.

[Texet56 in reply to Toci]

Thank you, I have bought some today so am going to try it out at bedtime

[meganoscar123]

Hi Texet56, I read your post with interest, 4 years ago I was told I suffered from just vasomotor rhinitis and mucus dripping on my airways by a respiratory professor! How wrong could he be! I have severe eosinophilic asthma and am looked after at The Brompton Hospital in London now. My journey taught me one thing if your gut instinct is telling you that you are not feeling better but worst and you are breathless ask to have a spirometry test to rule in or out asthma. Yes acid reflux exacerbates breathlessness but Lansoprazole stops acid reflux and yet you are still out of breath!

(I too take Lansoprazole to control acid reflux from high dose oral steroids I have to take regularly) clarithromycin is good for chest infections and killing Step bacteria if that is the root cause. Ask your G.P to try you on a relatively new nasal spray called Dymista which is a combined steroid (localised so not with hideous side effects) and antihistamine. This spray has helped keep my nose a little less wet and inflamed but my inflammatory process is driven from white blood cell production in my bone marrow so only new class of injections just licensed will offer me hope, but Dymista will help IF you have post nasal drip which does make you cough loads and need to constantly clear your throat.

I suppose the moral of my story is do not be fobbed off...if things do not feel right push to get referral to your local lung team to measure your lung function, it is easy for these tests to confirm or exclude asthma or other respiratory illness. If I could go back 4 years I would have pushed more and not be dazzled by a professors title as he turned out to be talking twaddle! I was lucky and got the specialist care in London, hopefully yours is straightforward and can be resolved soon.

Take care, all the best I wish you well and I am here if I can help x

[casper99 in reply to meganoscar123]

Thanks for the name of the new drug, Megan, I will be asking my docter for it next week as the flixonase I've used for ten yrs, has obviously stopped working.

Texet, I wrote a long post weeks ago about the distress the huge amounts of mucus going down the back of my throat, was causing me.

I asked for the treatment regime my now retired, docter (30 mg lanzerapole + gaviscon 4 times a day) put me on 8 yes ago. It worked and reduced it to a minor nuisance. It flared up again but this time, it hasn't worked.

I really sympathise with you. I'm waking up several times a night choking and coughing and often vomiting, masses of mucus. During the day, I am in and out of the bathroom coughing and Gipping.

My throat is now constantly on fire and I 'm exhausted.

Two weeks ago, I went to the docter again and was given antibiotics because there was crackling on my chest. They did not help with the PND at all.

I hope you get some answers from your test. I have never been offered a scan despite this going on all these years. I will be making an appointment this week, I can't cope with this any more. Xx

[Texet56 in reply to casper99]

i am sorry to hear this Casper99 I know the exhaustion you are feeling and I truly feel for you. If anything comes to light with this scan I will let you know so perhaps you could ask the GP to refer you.

[casper99 in reply to Texet56]

Thanks Texet, I'm feeling desperate xx

[Texet56 in reply to casper99]

I know x

[carolg1 in reply to Texet56]

Hi texet, would you let me know too I am exactly same as Casper, thanks X carol

[Texet56 in reply to carolg1]

Had the ct scan but need to wait for the results. Will update. Sorry to hear you are suffering too

[carolg1 in reply to casper99]

Hi Casper, I have just read your post and was stunned yet in a way relieved your symptoms are almost a replica of my illness that my gp or consultant doesn't seem to know what to give me next, I've been like it now four years , at the moment I'm on azrythcamicin 250 3 times a week , not much improvement , my X-ray shows a bit of scarring from previous radiotherapy, but the mucus is relentless and I am convinced it's from PND severe ! I've been to ent twice quick camera up my nose and no a bit of inflammation but no other probs !,but no ct scan ever offered, the copious mucus I swear comes from the back of my nose and throat but everyone just says it's my condition !! Tunnel vision. Xx

[casper99 in reply to carolg1]

Hi Carol, it's so flaming draining isn't it.

I have scoured the internet for answers and you wouldn't believe how many there are like us. Suffering with this problem, with no solution.

A lot swear by the saline wash with a netti pot.

I had a go, from my hand and it did seem to ease it, but, it just started again a few hours later.

I know a major trigger that sets mine off, is dry heat.

I also suspect stress to play a big part in causing the flare ups.

My throat is sort of super sensitive now and is over- reacting to the slightest trickle. Just lately, I can be just sat there, and tears are rolling down my face, through the prickling feeling in my throat.

I don't understand how mine calmed down for a good couple of years and has suddenly come back so severe again.

I've been wracking my brains trying to work out if I'm eating or drinking something new, but, I can't think of anything at all.

I hope something comes along medically that can help us, it is so distressing.

I'm at my wits end with it yet, I dread seeing the doctor because last time I went, he had the same dismissive attitude as yours. xx

[carolg1 in reply to casper99]

I will keep you posted Casper if I find a magic cure xx carol

[Texet56]

Thank you meganoscar123

Sorry to hear of your ilLness too. I will try and be more confident when I see my own GP on Monday. I am the sort who just sits and says yes and no because I trust them to be the experts so I find your response very interesting. I had a telephone consultation with one of my practice GP's yesterday and explained about the acid problem but then mentioned my breathing, his response was a very cross 'are you calling about the acid or your breathing?'

Not knowing what to ask for is also a problem so thanks for response it is much appreciated.

[meganoscar123 in reply to Texet56]

Hi Texet56, Never forget WE are the experts about our own bodies and how they are or aren't working. The G.P you spoke to on the telephone does not seem aware that acid reflux can be a driver of breathing problems, but Lansoprazole with Gaviscon as well should eliminate this trigger and so if no resolution further tests are needed. Childhood asthma can return (mine following whooping cough in 2012) or suddenly develop in adulthood and it is wise to rule it in or out. Keep strong, don't worry about being the 'thorn in their side' with doctors if good health does not return. Persistence pays!

Good luck, wishing you well x

[meganoscar123 in reply to Texet56]

Sorry Texet56 I meant to say I assume you have tried sleeping propped upright with pillows to avoid reflux??

[Texet56]

Yes I am sleeping propped on 4 pillows

[Texet56]

Just saw your previous response. Thanks it feels reassuring to read. I was beginning to feel like I was going crazy.

[meganoscar123 in reply to Texet56]

you are not going crazy, you are just tuned into your own body and that will guide you through getting the help and meds you need to be well again! x

[dawniee2121]

Had all your systoms acid back of thriat choking asma attack vile burning too the top of my throat and ear four pillows the lotxx now im dieting ALL SYTOMS GONE...NO REFLUX...AT ALL...its like im a new person..but it took first two weeks of my diet..than it started to fade away...now i sleep..no problems no acid...dont get me wrong i get heartburn..but no acid hitting my throat and taking my breath away...im just giving my advice hope it helps you...obviously im healthy eating now...so perhaps thats helped...i wouldnt go back to my old diet...as i was so poorley from week to week with reflux...i perfer my life now...good luckxxx

[Texet56 in reply to dawniee2121]

This has been on my mind. I am overweight. Thank you very much for sharing it as I do believe you have spurred me on to make the change. It has to be worth it on many levels. X

[dawniee2121 in reply to dawniee2121]

Yes my angel im obese too...to be blunt..as my doctor reminded me at xmas...he said you can help yourself in many ways dawn..i was so upset at the way he dealt with me...but honestly he told me im very overweight lady...and do you know..deep down i was so angry at his insult..but than i said i SHOW YOU WHO FAT...guess wat lost 16pounds in eight weeks...and no reflux honestly...that to me is itself the best thing no acid....as i know and you know its a terrible feeling..and you are physically ill from all the underlying problems it causes from stomach....and it pulls you down to the floor...i hope all of this will help you....im here if you need support good luck on your journey to a new youxx

[Texet56 in reply to dawniee2121]

Thank you, I really appreciate that. Sorry your dr was so insensitive especially at a time when you are feeling so low. Well done on your journey so far, I feel inspired. Are you on any particular diet or just a healthy eating plan? I've just googled the nhs healthy eating website and it looks interesting x

[dawniee2121]

No my own diet lol...still eat bread pototoes in moderation..had sausage sandwich aswell lol i go between 1400 aday max to maybe 1200 aday i yo yo..with my intake...stops me plautea my spelling not good...i find that mow my stomach must have shrunk as im struggling to eat a full sandwich...at first i drank 2 litres water a day...now im down on water....maybe too glasses aday...but i must admitt now im not eat as many apples either at first i was buying loads of fruit etc now i have perhaps two peices a day...i was having two bannans medium aday aswell...which helped as i cut all sugar out...completely now im having very small amounts of carbs as i was get tired very early....and must amit my levels of energy has improved...any help feel free to ask...oh i EAT THREE TIMES A DAY ONLY......MORN NOON EVE......

[Texet56]

Well done. It's not easy. I am definitely going to give this a go. Stay in touch x

[Texet56]

Results of CT scan were that my sinuses are completely infected. This is also what is causing the post nasal drip and the coughing I am told so now I am waiting for an appointment with ENT