Help with LPR/Gerd, not sure what to do next

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Hello all, I was looking for a bit of advice about LPR/Gerd. It's a long story but I'll try to keep it as brief as I can! I went to my doctor in Scotland last summer as I was waking up in the night with a sore stomach. She prescribed me 20mg omeprazole for 4 weeks with a double dose for the first week. All good. Took them and felt fine with no pain. Then in November I began to burp all the time, even first thing in the morning, and it felt like I had a constant lump in my throat. I am travelling in Spain and at the moment I'm in Valencia so went to the doc here after 3 weeks of burping. She prescribed me Cinitaprida (a pro kinetic) for 16 days. I got a nasty cold and sinusitus over christmas too which hasn't helped :-( The lump in my throat and burping went after the cinitaprida but were replaced by a burning throat and a weird mouth, sort of burning too and I seemed to have a lot more saliva than usual. Couldn't get an appointment here over Chirstmas so I phoned my doc at home. She suggested I try 20 mg omeprazole again. Tried them for a month but didn't feel any better so went back to the doc in Spain last week. She has referred me to a specialist but that's not until May. She mentioned a hiatal hernia. Also she has prescribed pantoprazole 20mg once a day. It's been just over a week but I still feel rubbish. My throat gets sore a lot, especially in the evenings when it burns, usually about 3-4 hours after I have eaten. By the end of the day my voice feels really tired and strained. I've been following a diet for 2 months and given up coffee, alcohol, chocolate, cheese, fried food etc for 3 months. I've lost a bit of weight and now am about 8 and a half stone, if I don't eat some fat soon I'll waste away! Nothing seems to be helping. I'm thinking it's LPR/gerd from what I've read - the more I read the more I think I've had it for quite a while. I have avamys spray for allergies, ear blocked a lot, had a couple of chest pain situations a couple of years ago, excess mucous... Is there anything else I can do? I wondered about seeing the doc again and asking to up my pantoprazole dose to twice a day for a while to see if that might help? I don't think I can go on like this until May, I'm guessing that there will be a wait after I've seen the specialist to get any tests too. I'm wondering if I should go private because I'm in Spain - not sure how much stuff like this would cost though. Does anyone have any suggestions or have had similar symptoms? Did you ever feel better?! I don't feel like anything is helping and I'm miserable. Sorry for the massive post! Thanks in advance :-)

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  • Posted

    Your symptoms do indeed sound like acid reflux.

    PPIs (omeprazole, pantoprazole etc) will reduce the acid but not the reflux.

    20mg omeprazole is the standard maintenance dose but is safe to take in larger quantities if necessary. (I was on 80mg for a few years before having reflux reduction surgery = fundoplication. )

    But 20 mg patoprazole is only equivalent to 10mg omeprazole so this sounds as if it's too low to be useful for your needs.

    As regards the lump in the throat (globus) and reflux symptoms, you'll need to manage those with lifestyle modification: don't overfill your stomach (eat little and often) , lose weight if necessary, avoid tight clothes, avoid exercise after meals that will shake, tilt or compress the stomach, leave at least 3 hours between your last meal and going to bed etc. If lifestyle changes don't help, you may need to consider surgery.

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    • Posted

      Hi Barrets,

      Thanks very much for your reply and all the info. I will ask the doctor about getting a higher dose of pantoprazole as it doesn't seem to be helping much.

      I think I'm doing all im supposed to in terms of lifestyle changes, and the lump in the throat has gone. It's just the burning throat and mouth that doesn't seem to be getting any better. It's getting me down a bit now but hopefully if I can get a higher dose of pantoprazole for a while and stick to the low acid diet then it will start to improve. Has the surgery helped you? How do you feel now?

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    • Posted

      Pantoprazole may stop the burning sensation (acid) but not reflux which it sounds as if you're doing all you can to manage.

      Low acid diets make no difference. Your stomach adjusts its acidity as required. Low adcid diet is as effective as adding a kettle of water to the ocean.

      Suregry gave me my life back. I had most of the symptoms listed on the appended graphic and more before the operation. Afterwards, they'd gone.

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    • Posted

      Great thanks for that Barretts. If I don't need to be on a low acid diet I would rather not be! It's very low fat too. I'm trying to eat avocado and salmon to up my calorie intake a bit.

      Good to hear your surgery was such a success, it gives me hope that there is something that can help! I need to see a specialist so they can find out what's going on and take it from there. In the meantime I'm going to try 2 x 20mg pantoprazole a day to see if that helps at all.  

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  • Posted

    Hi gemi5,

    I have had similar symptoms to you so will tell you my story in the hope that it helps.  I am female and in my mid 50s and live in England.  I have always been reasonably fit and healthy and rarely at the doctors.  Two years ago I went to the doctors with throat and ear problems and waking up at night.  I was put on 30mg Lanzoprozole (a PPI drug) and this was put up to 60mg when it had no effect.  I began to feel worse and had constant burping.  My throat got very bad and my sleep deteriorated.  I decided to come off the PPIs.  By this time I was really distressed.  I was so worried about my throat.  Getting off the PPIs was hard but I used ranitidine and my doctor prescribed motilium to help things move through as a short term measure (I have a tendency to constipation as well and take movicol).  I had tests at hospital for acid refux and could hardly believe it when they found no significant acid levels. They did find I had a small amount of Barretts oesophagus which I now have monitored.  I felt quite distressed that they didn’t know what was wrong with me.  I tried modifying my diet, nothing worked; I still had constant burping.  My weight went down to 6 and ½ stone (I was usually about 8 ½wink and I began to get really worried.  I read that low stomach acid can cause similar symptoms to acid reflux.  Basically undigested food remains in the stomach and ferments and the gases given off (burping) can affect your throat.  Stomach emptying doesn’t take place unless there are certain levels of acid so more and more food piles on top of what is there. It is hard to believe that these things are so poorly understood.  I started counting calories to make sure I put on weight and did exercise.  I eat healthily (lots of spinach) and try to cut out refined sugars and get calories from oils and fats; I take a good multi-vitamin and fish oil.  There is no magic answer to this but I am much better and my weight is now 8 stone.  The constant burping has stopped and my throat has healed.  Every time after I eat though, I have a weird swelling feeling in my throat.  My ear is still blocked.  I constantly wake up throughout the night. I feel the PPIs made me worse and am glad to be off them.  Because I got quite anxious, and this in itself is bad of the digestion, I read up on CBT and mindfulness and relaxation which helped me. Life is great and I am happy.  I keep checking the forum to see if anyone comes up with a breakthrough but I can cope with things at this level.  Hope this helps.

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    • Posted

      PPIs reduce acid. There are many of them, an equivalent doses chart is attached as a graphic. The symptoms you describe are reflux.

      The free book / website www DownWithAcid org uk is a fully researched encyclopaedia about acid, reflux, compllications and management.

      Reducing acid makes the reflux less dangerous but the symptoms are usually those ike heartburn from acid attacking the oesophagus (though not everyone fees it) . If you have Barrett's it was due to acid being refluxed. (See attached graphic. )

      Symptoms of reflux (but not necessarly acid) can include those shown on the second attached graphic.

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    • Posted

      Hi Sleeky, 

      Thanks very much for your reply and telling me your story. It sounds like you've had a pretty rough time. Glad you are coping with it now and feeling a bit better. I have read so much online (probably not a good thing!) that I'm not sure what's going on. Because we are in Spain it's making things a little more difficult. I've found a hospital nearby with a digestive specialist so I'm going to try and get an appointment with them to see if they can find out what's going on and help me. I have read about low stomach acid being a problem too, it seems that there's so many different things that can cause gerd/lpr. It's weird that it always seems to be worse for me after about 10pm - 3 or 4 hours since I have eaten :-( I would like to get back to eating more foods if I can! If a low acid/fat diet isn't making any difference then I'd rather not be on it. I'm missing cheese soooo much! 

      I'd like to get off the ppi's some time too, I don't like the idea of being on them for a long time. I'll try and count calories now too, that's a good idea. Trying to eat little and often but sometimes it feels like there aren't enough hours in the day to fit in 6 small meals before 7pm. 

      Thanks for letting me know it does get better, I hope you continue to feel great :-)

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