Persistent reflux and vomiting during... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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Persistent reflux and vomiting during the night x


I have had horrendous reflux and vomiting during the night. The reflux disturbs my sleep and I wake coughing and choking on vomit. This problem is getting worse and is very frightening for me, and very concerning for my husband. I was seen by a gastroenterologist today who is arranging an urgent scope for me. I have tried sleeping on several pillows, but because I experience muscular skeletal pains I am very uncomfortable. I also have iron deficiency anaemia and my gastroenterologist is arranging iron infusions for me. Has anyone had any similar experiences that they can share as I am becoming very worried about the outcome x

27 Replies

Hi Linda,my name is Alex.

I sympathise so much and have and do suffer with exactly the same reflux.The burning is almost unbearable,and have often choked with the sudden acid pouring into my throat,and lungs.It is very frightening indeed.

Over the years I have (mostly) managed to get into a routine that avoids it.SO don't despair!

Here are my suggestions!

Ask your doctor to the very effective acid reducing drugs such as ezomeprazole obviously only if he or she is happy that you are suitable.

Gravity helps hugely so maybe raise the head of the bed a bit,I have done this for a time and it does help!And if you can bear it a v shaped pillow to elevate your top half.

No eating after about 6 or so.

Sleeping on your left side relieves pressure on the esophagus.

No clothing tight around your middle.

It is so important not to get acid into your lungs so even though it is pretty boring sticking to all these will help in the long run!

The thing that made most immediate difference to me was the ezomeprazole,without it, everything burns all day,with it..I can generally eat a good range of yummy food!

I hope that I wasn't too bossy ;)

Stay positive and take care.HOw lucky you are to be blessed with a loving supportive family!

Love from Alex x

Thank you Alex for all your advice, you are so kind. I will certainly try all of your recommendations and let you know the outcome x The nurse form the endoscopy suite telephoned me this morning and I have a scope arranged for next Thursday, so fingers crossed this might improve. Take care Linda x

in reply to Alexandra-M

Hi there Alex my name is Ricky and I suffer from gerd and it burns like hell in my throats and feels like the acidy taste is sitting on my lungs I was wondering if at all you could tell me why you can't get it on your lungs it is worrieing and should I see a doctor about this this only happens when I eat chocolate or drink chocolate please reply to my question thank you Ricky Duncan .

in reply to Rd12345

Hi there Ricky! So sorry you are suffering with the horrid acid. When the acid comes up from your stomach it nearly always has particles of food,even tiny microscopic bits as well as the acid,and when it gets to the throat,especially in the night if you are asleep,it can go straight into the lungs ( the opening to the lungs is very close to where your food goes down) and basically you then get damage to the lining of the bronchi with the acid and the particles of food can start an infection and inflammatory process that is really not good. I have scleroderma with pulmonary fibrosis and if I have lots of reflux then my lung function tests definitely suffer.

You absolutely must see your doctor as the medication for reflux is so effective! I'm on Ezomeprazole, but there are a few different types. They literally stop the production of acid which enable your esophagus to heal and recover. You also may need a look with a camera just to check what is going on. You will feel much better once you are on the right medication. And sadly you may have to cut down on the chocolate:(

Take care

Best wishes


The reply from Alex to your question regarding reflux is very good. As a sufferer myself and someone who has regular endoscopies (I also have Barretts in addition to the scleroderma problems of the oesophagus), and at a recent consultation I discovered that although I have been taking losec (and now Nexium) regularly for many years I have been taking 40mg at night and 40mgs in the morning. The consultant said that I should take Nexium in the morning, Gaviscon (liquid) after lunch, Nexium BEFORE the evening meal and Gaviscon at night. This has certainly helped with reflux in the night. I have three pillows and a V shaped one which helps. The consultant also said not to eat late and to avoid tea, coffee, fizzy drinks, alcohol and chocolate for 3 hours before going to bed - what pleasures are left?!!!!

It will get better once you get the right medication and advice. Take heart!

in reply to AHM42

Thank you so much for your kind advice. I will try not to eat too late and see if that helps. My endoscopy is planned for next week, hopefully I should have some answers and the right treatment. x Take care x

I had a scope and my doctor said that he was going to go ahead and treat as if my esophageal sphincter, the flap that keeps acid from coming back up your throat, has been damaged by the scleroderma. Nexium or Dexilant are the two most potent acid pump inhibitors. I have not had any problems since being on these drugs. Until you can get in to have the scope, you can take the over the counter versions of proton pump inhibitors. You can take Prilosec or Prevacid OTC or their generic versions sold in stores. I used to take them before I was diagnosed with scleroderma and they did fine. Just make sure that if your doctor talks about giving you a drug to fight the severe reflux you are experiencing, insist on either Nexium or Dexilant. As I said, they are the two most potent PPI's available. Your esophagus is worth it.

Thank you for your kind comments x fingers crossed things will improve when I start on the right treatment x take care x

Oh yes without my medication I would never get any sleep. I was told to raise the bed head, with blocks, not to add extra pillows. I take omeprazole 20mg twice daily and I have just had added Ranitidine before bed. I also have a good spoonfull of Gaviscon last thing at night. This combination seems to work for me usually. You need to get it all sorted as acid going into the lungs is VERY bad. Best of luck with the endoscopy, there is plenty of medication which will help it is just a matter of finding the right combination for you.

Oh and I forgot to add that I also have anaemia. I have had every test under the sun to find out why. In the end they just said that I don't absorb it well. I also had intravenous iron, but now take a daily iron tablet and usually just remain above the anaemia level, but iron tabs are well known to disrupt the digestive system, its a question of trying different ones to see which suits. Best of luck.

in reply to Yorky

They can't find why I'm anemic as well. I have to take iron pills daily but have found that the slow release iron doesn't hurt my digestive system. Hope they sell them where you are.

in reply to Yorky

Have you considered that you may need B12 shots to help with iron deficiency. Many people are not able to absorb B12 from food due to an inherited gene. There is a test for this "intrinsic factor " if you are missing it you won't absorb B12 resulting in severe anemia and other complications.

I have had this problem for years and have had to be on 40 mg of Nexium. Also have to sleep on a wedge to keep me upright. It is difficult to get used to as I have issues with my neck (had C5-7 replaced 5 years ago). Also, not eating after 6 seems to help as well as watching what I eat (garlic, in any form, makes it 10x worse although I love garlic, can't have it). My gastro did the tests and found that I no longer have any muscle in my esophugus. It has been replaced with fibrous tissue all due to the scleroderma. All the other replies are right on target as well. Hope you get some relief.

in reply to CathyBovia

I find your neck problem interesting, I have had the discs taken out in exactly the same place, but I was told it was arthritis, nothing to do with Scleroderma!!!!!! I am still very weak, paricularly in my right arm, are you the same?

in reply to Yorky

Hmm and I have had C1 and C2 fused t the Atkinson morley due to erosion and collapse....what is happening with our lovely necks!I due have huge arthritis overlap with my Scleroderma,it becomes hard to separate everything.Anyway I wish all of us a lessening of pain and a better day tomorrow! With love Alex x

My neck is still very sensitive. The least bit of cold and I have spasms that go right up thru my head. Very uncomfortable to have to have a hoodie with you wherever you go, particularly in the summertime. Now I'm having issues with one of my knees and have had to have my hip replaced (due to a birth defect). I feel like I'm falling apart and being replaced with bionic parts one piece at a time! LOL!

in reply to CathyBovia

This is very odd. I also have a painful knee. I have had it x-rayed, which showed a build up of calcium on the ligaments/tendons. I am told that there isn't anything which can be done about it, but was recently given some anti-inflamatory tabs which have helped a lot. But I do recall that after my neck op, the neurosurgeon said to me that my neck had been very calcified and they had to chip away a lot. So I have my doubts about the neck problems not being conected to Scleroderma.

in reply to Yorky

I am vomiting acid in my sleep & it comes out my nose & burns my skin. Obviously my throat hurts.

I have RA & knee problems (I had a knee injury decades ago, but now BOTH knees are shot).

I desperately need surgery on my lower spine & neck, the lower the L-5 S-1 disc is gone & pushing on my spinal cord, the neck is 2 discs & my head is forward. When I hold/push it in position I get shooting pains down my spine. I was supposed to have surgery on my back in 2005, but the Dr. said I was too thin & weak (I don't have insurance so that was my only shot, I was in bad shape from severe consistent, pain).

The damage to my disc was due to a " medical mistake, really just negligence in 1990 when I had a epidural when my son was born.

Sorry to go into my medical history, but I was looking up why I'm vomiting acid out my mouth & nose while sleeping & all this was mentioned!!


I also have a history of anemia, which was mentioned. I'm 50 & had anemia & ulcers in my 20's.

I also have a herniated intestine where my ovary was removed (cancer) 32, why I can't get insurance. (Disability turned me down, said I was too young at 50).

Can anyone enlighten me to what these conditions have in common????

I don't believe in coincidences.

I would really appreciate it!!!!

Love & healing light to all!

in reply to Yorky

I am in the US but their dx's are defined for the pharma co's & insurance co's to make money, so they are inaccurate.

Some things are only in the UK.

I just realized this was a UK site. Sorry about that.

I wanted to clarify due to the differences in medical, medications, etc. Thank you again! I am suffering with a burning throat & nose & sinus pain from the acid. And chest pain, probably not related.

Light & love❤

Hi, I have also suffered with waking up choking on acid which was usually worse if staying somewhere where the head of the bed was not raised on bricks. I am not sure if it would help in your situation but I was overweight and having lost 4 stone in weight and eating healthily my symptoms have gone. I have now halved the dose of Pantoprazole that I was on.

Hi Steph, thank you for your advice. I have been reviewed by my gastroenterologist who advised that I eat smaller portions and to avoid eating late at night. I am also sleeping with the bed slightly elevated and things thankfully have improved. However, I'm still having episodes where I wake choking with reflux and aspiration into my lungs. I had a repeat endoscopy last month that revealed a small area of gastritis. I am still suffering from iron deficiency anaemia with no focus of active bleeding, so I'm having a visual CT scan of my colon next week and I have an appointment for an iron infusion. I also dieted lost 4 stone in weight. However, I have recently lost 7 ponds without trying, Take care x

i had probs at night but not as bad when i told the doc he checked me for diabietes and found i'm om the verge. so i have to change my eating . so i've cut out suger & pastry of all sorts at mo as i'm still fumbling around with food but i have found it is helping as i dont have so many heavy acid attacks .

I hv that same problem tryn to get help from my doctor

My name is Alisha. I can definitely relate to what you're going through. A couple weeks ago, while riding home from a family gathering, I felt as if a grown man had punched me violently in the region of my heart. The pain was so terrible; I thought I was having a heart attack. My husband stopped at a local gas station and bought some Rolaids, but it did nothing for the pain. We were finally able to get some Pepcid AC OTC from the pharmacy and that helped somewhat.

I continued to have pain in my chest, esophagus, and stomach. At times, without warning, I would have to run to the sink or bathroom to vomit .

One day last week, I was taking a nap and woke to a mouthful of blood and acidic liquid. It scared me to death! Then 2 nights ago, I woke up choking on vomit and almost died from lack of oxygen b/c I couldn't get my throat cleared.

My primary dr. thinks that when I had that first sudden pain while riding n the truck was an esophageal tear. He has scheduled me for an endoscopy on Monday.

I know that for as long as I can remember, I quietly belch every single time I eat or drink any food or liquid. About 80% of the time, I get the hiccups when I eat solid food.

I don't know what causes this.

Do you have any experience with issues like mine and , if I have to have surgery, can you explain to me what it's like and what I can expect? I've , unfortunately, had many, many surgeries in my adult life. So I'll understand the "jargon" that goes along with surgical/medical discussions.

I'd appreciate any and all thoughts and ideas from all of you, please. Thanks!!!!!

Hi im new to this group.ive been diagnosed with a hiatus hernia and severe stomach inflamation for about 2 years.i was taking normal meds for the heartburn but it wasnt that bad,it was more the severe pressure on my chest that was a problem.i was due to have another endoscopy last may wen i fell ill and was diagnosed with a rare brain disorder and since then have been literally housebound as it affects my spine too.but over the last few months ive been waking up choking on acid coming down my nose and in my throat and im pretty sure most of the time im aspirating it into my lungs coz when i take a deep breath i cough and i have a massive wheeze until i can cough as much of it out.ive not been to the doctor yet as im scared ill have to have one of those tubes down my nose.has anyone had it aspirating in their lungs and what is the outcome

YES i have had the same issues at the piont i vomited blood,i just had blood tests and waiting results,my doctor also is sending me for a endoscapy.i will try and keep you informed as i go,

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