what to do if PPIs don’t work?

[Robfromwales]

Had unusual chest discomfort on and off for over 2 years . Had all cardiac tests and diagnosed and recently treated thoracic aortic aneurysm. So it’s not cardiac. As a result had endoscopy that found chronic non cancerous oesophagetis. I have tried all the PPIs going and at different strengths and nothing has prevented attacks of what seems like atypical discomfort chest sensations which from what I read are quite different from typical indigestion or heartburn pain. Mine are very short bursts of what I would call a pulsating pain and not always behind the sternum. I have read that maybe is it 20 per cent of people ( is it more?) don’t get relief from PPIs. Have any folk benefitted from H2 receptor blockers ( if I am using the right phrase).

just to advise that I think I have tried every natural remedy going plus cessation if possible triggers like alcohol, chocolate, crisps, bread etc. any thoughts gratefully received plus anyone get this atypical chest discomfort that doesn’t seem to match what I read are typical symptoms of indigestion or heartburn.

[Beanlover]

You haven't mentioned trying gaviscon. It is supposed to be helpful for those who have acid reflux in the throat, rather than heartburn. It prevents acid refluxing, rather than just reducing levels of acid in the stomach. Taken after each meal, and at bedtime.

[Robfromwales in reply to Beanlover]

I have used it but perhaps not consistently. Thanks for reply

[Gavis]

Hi, Could it be oesophageal spasms, very painful and easily mistaken for heart attacks, the pain is intense. I can now identify some of my triggers like acidic drinks (lemon) and anything sharp that might scratch the oesophagus on the way down like crackers or crisps that may not have been chewed down enough, anything the already irritated oesophagus isn’t happy about!

I went to my GP as mine were getting worse and he prescribed a GTN spray, same as what they use for Angina, he says it works and this was supported by my Gastro when I saw her recently. Fortunately I haven’t had a spasm since getting the spray so I can’t prove or disprove that but there may be others who can?

[Robfromwales]

thanks for reply. Can you let the know what the pain is like from oesophageal spasms and how frequently they and other symptoms occur? I am having a really bad run of things at the momemt

[Gavis in reply to Robfromwales]

Apologies missed your reply. The spasms are different from the ‘usual’ acidic pain, for me they are usually related to something I’ve eaten, but not always, it comes on gradually starting deep in the throat it feels like a tightening from the throat, left side of chest and upper abdomen. The pain seems to progressively worsen and lingers central chest, probably why some people think it’s a heart attack, how much of the pain is the actual spasm worsening or the reaction of panic. When I first had one I woke up about 4am and it just came from nowhere, I had been laying in my right side though which is something I avoid now. I couldn’t lay or sit with it I got up and just walked around the house for about 45mins before it finally abated. Since then when I get that feeling in my throat I take an anti inflammatory and a Panadol rapid immediately and that usually helps if it starts to come back I take another dose. It started to get more frequent and the GP prescribed the GTN spray to relax the oesophagus, it makes sense it would work I just haven’t had to try it yet.

Sorry to hear you’re having a bad time, the whole reflux thing is horrendous, so frustrating when nothing helps and you’ve got all these crazy symptoms and wondering why no one can help you. I am currently having a ‘relief’ time meaning I’ve managed to get off the twice daily ppi, still taking famotidine (h2 receptor) and regular gaviscon extra, have what I would describe as low- medium level symptoms but can ease off some of the everyday life restrictions it presents you with. But I’ve done this before and it came back fiercely and lasted for months and months for whatever reason so I’m not kidding myself it won’t return to high level discomfort at some point and it will probably be back on the ppis and the strict regime. I’ve tried most ppis some seem to help for a while then don’t, so have been given different ones and so the cycle goes.

For me acceptance has been helpful instead of trying to fight it constantly, it’s taken a few years -started 2018- I’ve had everything else checked out to make sure there’s nothing cardiac or sinister and accepted I have to live with it and the restrictions that go along with it because the anxiety and stress about it just makes everything worse. Trying to explain it to someone who’s never had it, including Gastros is useless, unless they’ve been or are going through it they’ve no idea how it affects quality of life. Stick with the routine strategies you’ll see throughout this forum as they help even if it feels they don’t sometimes and remember it’s different for everyone, some things work for others or not. I hate taking ppis but I take the medical advice and get off them as soon as I can.

[Robfromwales]

amazingly I am in a period of respite at the moment. Only thing changed is not drinking robois tea and not sleeping crunched up with hands underneath my sternum on my front like I used to . Just taking Gaviscon when necessary which at moment is very spasmodic.