Reflux bed risers .?

[carolg1]

Hi everyone I’ve raised my bed at the top by six inches to help with bad reflux or mucus getting stuck, do I still raise my pillows also , I’m not sure , while I lay in bed things feel wheezy but ok as soon as I get up and out of bad the mucus is stuck I can barely breath till it’s out sometimes it neither wants to move up or down wish we could find something to dissolve the dame stuff xxx

[Ern007]

Hi carolg1.

Your post seems to be in two parts. First the Acid Reflux, My solution to that is take an extra Omeprazole before my tea. I have permission to do that...Not sure what you mean about "reflux or mucus getting stuck"?

On your point about mucus getting stuck, I have just had 10 days of that. You say you are "Wheezy" in bed. Are you on any medication such as an (Antibiotic)?

You sound very out of sorts and if you have not been, I would go to doctors and get some treatment. i have never been one for raising the bed, I would rather have extra soft pillows.

Not a lot more I can add really, except I hope you can "dissolve" your problems soon - In short get some help to feel better.

[carolg1 in reply to Ern007]

Hi Alan thanks for replying, yes my symptoms are odd I’m never sure where all the mucus is being created and the consultant isn’t either !! Which is worse it’s either from my esophogus gulett or chest , either or I can barely breathe till I get it out it’s always stuck in the same place bottom right hand lung and central large airway at top of stomach it’s thick and salty so gross and scary, some days I fear for my life it’s every day, I’m on pantaprozol have been quite a long time x

[Sillysausage234 in reply to carolg1]

Hiya carol I know where your coming from,it’s hard to know at times and sometimes it’s post nasal drip with me,reflux disease imflames everywhere mine is left side do get on the mucalytic carbocyseine it helps to clear that plug you are describing best of luck xx alan

[carolg1 in reply to Sillysausage234]

Thanks Alan I’ve been on carbocystien for a few years but they keep changing dose because of the bronchiectasis, and that’s exactly what it feels like a plugged blockage that I can’t completely get through just hacking little chunks up but never clearing and definitely a PND my nose feels like it’s constantly bunged up, being on oxygen I don’t think helps that sensation either xx

[Sillysausage234 in reply to carolg1]

Hopefully things will improve for you with your bed raised the gerd will calm down a bit and you can get on top of your copd xx

[carolg1 in reply to Sillysausage234]

Thanks Alan x

[carolg1 in reply to Ern007]

Hi Ern, I’m just on my second week of antibiotics and steroids to rid a colonised coliform infection co amoxiclav, but this mucus problem has just been getting steadily worse over the past two years it’s now out of control and scaring me half to death, the docs don’t seem to know what to suggest next 😰thanks for replying

[Hidden in reply to carolg1]

To be honest, carol, your mucus problem seems to be completely abnormal, in a different league almost (sorry to say.) Has your consultant sought a second opinion? There must be someone who's come across this before, surely.

[carolg1 in reply to Hidden]

Hi hanne, yes I was referred to a professor Alan Maurice who is an expert on upper gi and airways etc his diagnosis is I have a extremely unusual jackhammer esophogus one he has not seen so strong !! It’s been going on 4 years pand just got worse eventually by the time I was referred to him there is little they can offer by way of an operation as my copd is poor and it would be too risky !! As if choking is not risky ?? All these years and chest infections which were probably part of the reflux aspiring into my lung o all I can do now is just try and lessen the amount of mucus, the pain which is awful is under some control with morphine, you can imagine how I feel xx

[Hidden in reply to carolg1]

I can't really imagine it, carol, it sounds just too awful. Surely it's up to you whether to take the risk of surgery? The choking by itself must be torture, without the pain. That pain is frightening, I panic when I feel it coming on because you know it's not going to stop any time soon and it's so intense & nothing relieves it. Yours is worse though, I know. I've had many fewer episodes since raising the head of my bed & being obsessively careful about eating. It goes to show how absolutely essential it is to control reflux at the outset, I'm so sorry this wasn't done for you and wish you'd been referred to this man earlier.

[Sillysausage234]

Hi carol it does feel strange at first but you get used to it..alan

[cofdrop-UK in reply to Sillysausage234]

Not tried it yet but I did ask Zube when we were discussing it and she said she now only uses 1 pillow.

Are you saying the mucus has started sticking since you raised the bed or that it did that previously too?

cx

[carolg1 in reply to cofdrop-UK]

Hi cofdrop, no it’s Ben happening along time but it’s getting so much worse, xx

[cofdrop-UK in reply to carolg1]

Sorry to hear that - it's a b.

cx

[Sillysausage234]

Hi I only use 1. Pillow now,carbosistene 3 x 3 daily is helping a lot to get to grips with the glue like mucus,it is really recommended if your not on it already also bought some zantac today,and that helps gerd spasm better than omeperazole for me,was going to try nexium,but £6.99 for7 tablets so will ask the g p first ..good luck 😊Alanx

[TuckBox2]

Hi Carolg,

Like Alan I am on Carbocisteine to thin down the mucus, which has helped, I am also on Nexium (Esomeprazole) which is stronger than Omeprazole. My gp changed my prescription to Omeprazole because it was cheaper but I had to stand my ground as I had been on that for 8+ years and it was not helping, also they would be going against the hospital specialists who put me on to this.

[carolg1 in reply to TuckBox2]

Thanks tuck box my friend is on that she swears by it, but she hasn’t got lung issues too, thanks.

[Shancock]

I have Omeprazole morning and evening, 20 mins before eating and spoon of gaviscon before bed. I use nasal rinse for mucus relief and Avamys spray at moment. I have lots of pillows and one of those triangular ones which is super comfy. Also try some steam before bed and a hot water or camomile tea before bed.

[Hidden]

Hi Carol

Seawater nose wash 3 times a day or make your own, there are some doctor’s recipes on the net and use a syringe..

Nebulising also helps..

Our friends have told you about carbo cysteine and nasal sprays.

When it gets that bad only steroids used to help me but prevention is the key.

Take care x

[Sillysausage234 in reply to Hidden]

Hi fran I’ve just got some fine Himalayan rock salt seems ok for nasal flush x

[Hidden in reply to Sillysausage234]

Ah that’s good I used to make it with maldon salt, now I am lazy I buy saline x

[Hidden]

Carbocisteine seems to work for many but didn't help my lung clearance at all, I’m much better on 7% saline. However, it works on the principle of osmosis so may not suit you. I’m surprised you’re on pantoprazole tho as Nexium is better. I’ve tried others but they don’t work as well for me. My GP complained about the cost but I stuck out for it because it was prescribed by the consultant. Maybe you could ask your consultant about it.

[carolg1 in reply to Hidden]

Thanks hanne I am going to ask for nexium have you tried one I can’t remember it’s name but I think it begins with an e, .? Some one also mentioned nighttime ranitidine ? I’m supposed to take pantaprazole 40 in a morning and 40 eve, but I don’t eat after 6 it’s all so strange to me xx thanks

[Hidden in reply to carolg1]

Nexium is the brand name for esomeprazole, is that what you're thinking of? None of the generic versions of esomeprazole worked for me, I ended up having to take more of them to control the reflux, so I asked my GP to keep me on the Nexium brand. He said it's the same drug (yes, I know that!) but a relative who works in pharma told me the additives (called "excipients") can stop it working as well. Once I told my GP this he seemed to take my word for it & has put this on my notes so I always get Nexiu. I think they are slow-release so they just work better. At the Brompton they recommend, in addition to Nexium, 150mg Ranitidine morning & evening. If I were you I'd take both at night too, even if you don't eat, I think you need them to be working 24hrs. Pantoprazole didn't work for me at all.

[cofdrop-UK]

Carbocisteene doesn't work for me either but some folks seems to find it beneficial. I too use 7% hypertonic saline.

Re sinuses - Neil Med is very good and not as harsh for the nose as neat saline.

cx

[zube-UK]

Hi Carol, surely it might be something to do with the very unusual Jackhammer esophagus you were recently diagnosed with? and the pseudo bug which I know is so difficult to get clear. It is awful for you and I am surprised your consultant can not help more. I have a bit of a problem at the moment but hope to be back later. x

[zube-UK]

Hi Carol, how are you now? Is the co-amoxiclav reducing the amount and colour of the muke?

I read on Bronchiectasis News from US that Linhaliq has just been approved there for treatment of pseudo aeruginosa, it is an inhaled form of ciprofloxacin, maybe help us here eventually.

Also, with lung clearing you said it is wheezy but ok while you are lying down, have you tried the postural draining positions to get more out? This was the first thing I was taught years ago, then 3 yrs ago I was given an acapella to use while doing pd. As you know, I get on better with my lung flute but would use the acapella in pd position if there was plugging in lungs.

Questions, questions sorry Carol, it just seems so awful for any of us to be left to deal with this ourselves at home, did they offer to do percussion clearing or tell you about the shaker vest?.. they may not have thought it helpful in your case. Truly hope you get some relief soon, I'm sure you will when you get control of the pseudo. x

[carolg1 in reply to zube-UK]

Hi sue, I’m definitely suffererin with plugs and trapped air in my chest and airways it’s awful, strangely enough yesterday they suggested sending me for some physio clearance training I’ve been asking long enough, I panic which I try not to when I feel there is something blocked.... hope your doing ok il let you know how I get on luv carol cc

Xx

[ScardyCat40]

I suffer with reflux, post nasal drip and have pleural effusions. I have a bed raiser and I sleep on this with a pillow. I take omephrazole twice a day first thing in the morning and at bed time. I also take gaviscon as well after meals.

It’s scary when you make up in the middle of night gasping for breath with a pool of mucus that you can’t clear