My symptoms don’t seem to fit, but …

I’ve been suffering for many years now, but my symptoms seem strange and don’t seem to totally fit the standard GERD/GORD/LPR ones that I’ve read. I just wondered if anyone had a view on them before I take the next big step and start looking into surgery.

So, I’m a 45 year old male from the UK. I gave up smoking 16 years ago, so am currently a non-smoker.

During an episode cycle, I am woken maybe 2 times a week about 1am with chest pains. Much more of an ache, but it *really* aches. Aches so much I cannot sleep. Nothing I take seems to relieve the pain. 60% of the time, the symptoms disappear by the morning, but they may also run until about midday. Sometimes the pain/ache starts before I even go to bed – these are the worst nights. I can occasionally get back to sleep during an episode, but it’s pretty poor and constantly waking. Clearly this makes me very run down. The pain seems to emanate from the middle of my chest – lower sternum? It doesn’t feel like burning, however the next day my chest is still achy, I can feel the residue of “burn”. Often my ribs hurt the next day as well. On really bad nights the pain/ache will be all over my chest and through to my back. Oh, and during an episode, lots of belching ... lots (which is probably more indicative of reflux I think).

about 15 years ago I definitely used to get bad “traditional” reflux. Incredible heartburn, often waking up with acid/bile in my mouth and burning my throat causing me to cough and try clear my throat. At the time I took lansoprazole and probably with a few life style changes it seemed to subside and I stopped taking medication for several years. So I do know what reflux is like. My current symptoms are not like that.

Currently though, I cannot find a way to relieve the pain during an episode. Rennies (tums) in large quantities seem to have little effect. Gavison extra tablets, no effect. Gavison Extra liquid, no effect. Occasionally on really bad nights, I will just go for a walk for a few miles, it doesn’t really cure it, it just takes my mind of it a bit. This is an indication that it’s probably not heart related as a) I don’t think you can have 2 heart attacks a week for years and still be alive and b) I doubt you would go for a 4 mile walk.

I currently take 40mg esomeprazole twice a day, once first thing in the morning and the other about 8pm. I have also tried pantoprazole, similar doses. My only other medication is over the counter laxido, but I don’t take this for reflux.

The episodes appear to be cyclic. For example, up until a couple of weeks ago I had avoided any major episodes for about 3 months (I had hopefully thought that totally 100% giving up caffeine and coffee had done this), then in the last fortnight I’ve had about 4 episodes and I know from years of experience this will probably continue for a while.

I have given up a lot of things that I love; coffee or caffeine of any sort including tea, my dairy intake is very low, I have cut down on alcohol, I’ve cut out a lot of spicy food even though I love chilli and curry, I’ve also cut down a lot in cooking with fat or fatty foods. I cook a lot myself (I love food, I am a foodie) so most things are made from scratch with fresh ingredients.

I’ve never been able to figure out what, if any, triggers I may have. I can eat the exact same thing one 24 hour period as another and be totally okay one time and terrible another. My current theory is quantity, but if I eat any less I’m likely to waste away. I’m 6’2” (188cm) and weigh 12st 1lb (169lbs / 77 kilo’s). Once I even tried to force it to happen by eating and drinking the worse things possible while undergoing an Esophageal pH Test, but couldn’t. (NB I think the pH results where high during the night regardless of me feeling like I hadn’t had an episode).

I have had the camera down my throat (several years ago now), where nothing urgent was found (I assume that means no hernia). I’m fairly sure I’ve had just about every blood test under the sun with no terrible results. Also an ecg.

I see a consultant on the NHS, but the rushed 15 or so minutes every few months you get doesn’t really give me enough information and also it’s not the sort of information I’m after. I really want to know from people with similar experience. I would love someone to say that, yes, that’s exactly the sort of experience and symptoms I’ve had – and then ideally to go on and say surgery cured me I am lucky enough to be in the position to switch to private care, choose to have surgery and live near enough to London to have my pick of surgeons or locations. It’s affecting my quality of life so much now, that even if it just gives me a few years of relief I’m starting to think surgery is the right way to go – but I just want to know for sure that I have some sort of reflux disease before I go down this road.

Any comments much appreciated

Cheers for getting this far :)

Post Edited (chunkylover) : 8/30/2016 10:42:09 AM (GMT-6)

yes, i agree about only ever seeing one consultant might not be the best thing. i guess it's part of the reason why i'm asking here for more information. although, i also completely understand that asking advice from unknown people on the internet is really never the best place, but it might make me look into seeing someone else. my problem is, the current consultant i'm seeing now on the nhs, is the same guy i originally saw privately. he seems to be the guy i'm always given for anything gastro (even saw him for diverticular issues, so he's actually got a camera in me from both ends - fortunately a different camera and at different times :) ).