[richard1973]

I'm so sorry, this is a very long post, but I felt if I didn't put everthing in it could waste people's time in the long run. I would REALLY welcome your thoughts as I'm desperate for answers now. Back in 2004 I was treated for a duodendum ulcer, then in 08 I was admitted to hospital A&E twice with severe night time chest pains that were also present to a lesser extent during the day and accompanied by excess saliva in my mouth. (waterbrush I believe it is called). The first episode happened in Aug 08, and it was the first time in my life I have ever needed an ambulance. I had been in agony for days prior to that too. I had been taking antacids for a few weeks prior too. To confuse matters the hospital thought I was having a heart attack as the ECG gave out 3 funny readings (must have been my heart murmer which is benign). Anyhow, I stayed in cardio overnight, had checks and was okay and was given Omeprazole 80mg for 4 weeks then down to 40mg. There was no follow up via my GP etc. I wasn’t entirely convinced by the diagnosis of an ulcer as it felt so different to the doudendum ulcer I’d had (this was much worse), plus I wasn’t aware of a lot of acid coming into my mouth, although there certainly was some The Doctor said that was because it hadn’t got up there yet which I don't fully understand. I was just vaguely told it was acid. 2 months later it happened again (after I had completed the course). But this time I was literally bent over in agony on the floor most of the day and I lost so much weight it wasn’t good. The pain was SO bad lying down in bed I could not move to the left or right without feeling searing burning sharp whooshing pain in the centre of my breast bone and at the same time my mouth was over flowing with saliva. The serious pain came on after a big meal in the evening about an hour or so after eating. On both occasions the pains shifted to the back also which was nasty. When I was admitted to A&E the pains went after a while and they did test for gallbladder etc and they were fine, so I was released again with yet more Omeprazole but still with no explanation. (With hindsight I think being sat upright in the hospital bed may have helped) When I ask my Doctor why this hasn’t gone away he says it’s probably due to stress and that’s that. I’m not at all over weight, don’t smoke, drink moderately and do lots of exercise). I went back to another Doc who said it was probably an ulcer, but an endoscopy in 08 was clear of ulcers or chrons disease. Anyhow, this July just gone I move house and doctors and I start getting this squeezing in my upper back again (sort of upper back shifting between being below left and right shoulder blades). It is not muscular in nature and is not made better or worse by movement but does seem to be sparked off by alcohol. It is the same accompanying pain I had before when I was rushed into hospital but fortunately this time only in the back. I tell my GP my concerns and she says she believes it is muscular because I work in an office. I tell her I’ve always done a desk job and I’m sure it’s food/drink related but she tells me to do some arm stretches. A month goes by and I am miserable at work in the day because of the cramping/squeezing in my back. It’s a new job and I have to make a good impression, but the pains just make me unable to focus on anything. They are worst from 10am – 3pm. Twice I go home from work in too much discomfort to work. I go back to the Doc and see a different Doctor that day who says it could be acid and gives me Omeprazole 20mg. I take the drugs and nothing happens, - I’m still in pain. A month passes and I see another Doc (they rotate), this Doctor thinks it could be muscular and we do another strip off the shirt exam. I tell him I’ve done all this already which doesn’t go down too well. I leave empty handed hopeless and seriously fed up, now I am stressed! After a few days I decide to go back again as I’m about to quit my job I’m in so much discomfort and this time I’m upped to 40mg Omeprazole and given no explanation other than to drink plenty of milk, and that this happens if you’re stressed at work. In my head I’m thinking I’m not stressed at work, but I keep my mouth shut this time. 3 days pass and no change = getting worried. A week passes and eureka the pain has gone by mid Nov 2009. Like every other time the Omeprazale takes a while to kick in for me. Fantastic! I’m still left wanting to know what I have etc though and how safe are these tablets that I’ve been on for 9 of the last 16 months though... Still no diagnosis other than ‘acid’ though. I’m taking gaviscon again too.Then in December 2009 the symptoms reappear and my Doc assures me it’s probably because of Xmas. He tells me I must stay on the Omeprazole although I don’t like being on it one bit. We look through my old notes on the endoscopy I had in 2008 which showed no ulcer or abnormalities (a biopsy was also taken). My GP at the time was concerned that nothing would show up on the endoscopy since I was too unwell to come off the Omeprazole (80mg) and he said the risk was that nothing would show up on the endoscopy. I mention this to my new Doc and he says it wouldn’t matter as a biopsy was done. He then reads the clinical endoscopy notes which I’m not privy to and and tells me not to come off the Omeprazale and that I should give up caffeine and alcohol.Then last week I read an article about Omeprazale that scared me so I decided to be radical and come off it. I purchased an acid/alkaline book and SEVERELY restricted my diet all last week in the hope I could control it without drugs. No tea, coffee, chocolate, bread, biscuits, meat, fruit, pretty much everything apart from potatoes, salad and oats. I did this a few days with some success although I was not eating properly, and the pain was always lingering and would come back if I accidently ate something wrong. Then last night I decided it was time for some meat as I wanted some protein. So, I bought a joint of lamb on the bone and cooked it with mixed vegetables (include carrot, onion, and potato). I ate it up and 2 hours later was really pleased thinking it was a safe food I could add to my list since the symptoms usually come on an hour or so after eating. Then at 4am this morning OH MY GOD pain was like before when I had been admitted to hospital this time it was right in the centre of my chest again as well as my back. It was hell. Up all night with dreadful sharp burning cramping pains in my chest as well as my back. Getting up didn’t help massively. Today I’m bad too and am scared I can’t get into a state again not eating. I’ve taken Omeprazole again today, but it takes a few days to work for me. I am feeling a little breathless recently which is odd because I do lots of sports. I wondered if it was anaemia brought on my Omeprazole, but now I’m wondering if it is a GERD complication. Bottom line – does this sound like a severe case of GERD?? What should I do??? How can I manage this long term? I really don't want to be on Omeprazole for years as I've already been on it 16 monthsHow do I manage my Doctors as I'm not getting any diagnosis other than acid??

 

[Kathleen M.]

Well it sounds a lot like GERD to me (although functional problems in the esophagus can cause the same kind of pain)Not sure what other diagnosis you should insist on trying to force them to give you.GERD commonly acts up at night when lying down.Have you tried either putting the head of your bead up on a couple of bricks or getting a wedge pillow so you don't like with your torso flat?Not sure how fatty the lamb is but typically for something like GERD if you want some protein I would go with the leanest things available like chicken breast without the skin or a lean fish. Some people with GERD do seem to do well on a low carb diet rather than an all starch all the time diet which sounds like what the mostly potatoes and oats diet would be.GERD runs in my family even in the skinny people so it isn't just the overweight people who get it.

 

[madge]

I'm so sorry you're having this. Sounds like GERD to me. And Kathleen's tips are good ones, especially the one about raising the head end of the bed or using a wedge pillow.I know people who have been on Omeprazole for a dozen years or more and they're fine. (One is my son.) For sure, I'd stay on it until you feel you've healed. I had better luck with Nexium (although it's costly), so have been on that for several years. It really worked well...healed my raw esophagus over just a few months. I'm now on a maintenance dose of 20 mg a day. Every time I quit, the GERD comes back, so I stay on the Nexium and supplement at night (sometimes) with some Mylanta for heartburn, cherry flavor. ( I can't figure out why the companies that make and sell antacids keep pushing mint flavor and "cool mint," since mint of any kind is a heartburn trigger for so many. All I have to do is think about mint and I'd swear I get heartburn.)

 

[richard1973]

Thanks you so much for your responses. Yeah I've tried the bed thing. In fact last night I tried sleeping sitting up and it helped a bit, but it was still absolutely awful. I had two invasive operations in 2008, and neither of them were as painful as this GERD. Yeah i think you've got a point about the lamb being fatty... I have always stayed in shape so getting some protein is important, yet this acid/alkaline book says meats are all high acid. I'm confused by what to eat really. Do I follow the low acid diet (as per my book), or the Gerd diet because they are quite different. Anyhow, I shall follow your advice and try fish and skinless chicken. I'm not looking to demand any kind of diagnosis other than what I believe must be GERD. But my Doctor's just say 'acid' not specifically GERD. It's just that when I explain I have 'acid at work and to my family, they think I mean a little irriaitation like people get now and again not this life changing stuff. Therefore people don't understand the problem or what I'm going through. For that reason it's made me feel very alone battling through this actually. So therefore it's wonderful to have received your replies. I'm sorry to hear your son has suffered with this. I'm particularly comforted by what you say about long term usage of Omeprazole. I think I was worried after having read that it can have complications for guys such as lowering testosterone and impotence, so I really didn't want to take it unless absolutely necessary. I now realise it is that necessary. Does anyone else have any thoughts on the side effects of Omeprazole they could offer me? or how I should explain this 'acid' problem to people?Thanks again,Richard

 

[Kathleen M.]

Given the degree of pain I think calling it GERD may help make people know you aren't talking that occasional mild discomfort anyone can have.While it is worth knowing what the worse case happens to a very few people effects are for drugs so you know what sort of symptoms to look out for, remember most side effects happen to 1:10,000 people or less. A few of the common ones may happen to 1 in 1000 or 1 in 100 but generally even a "common" side effect is something that happens to a small percentage of people who take it.So you can't automatically assume you are going to always in every case be the unluckiest of the unlucky and get every bad thing happen to you.It is good to be informed so you know which things to report to your doctor IF they happen, but I wouldn't spend a lot of time assuming you will have the worst side effects you can find for some drug (and often you don't know how often those bad things would have happened anyway or really are the result of something else). I can't find those side effects on the official what they saw in the clinical trials sites, and for what it is worth GERD and male potency problems are both very common in over-weight guys. Most guys would rather blame a medication than the love handles and the hardening of their arteries from too many years of fatty meals, smoking and drinking a bit more than they should.ETA I did find a few reports that look credible (and still a very small number compared to the number of men that take prilosec) but http://www.healthcentral.com/erectile-dysf...a-2983-143.html says of the acid drugs prilosec (the brand name for the drug) is actually less likely than some of the other drugs used to treat GERD and gastric ulcers.

 

[BQ]

I don't know.. call me nuts..... but Richard when I read your accounts of the pain.. all I could think of was esophageal spasms. Maybe ask for an antispasmodic to try if it happens again???

 

[richard1973]

Finally I feel like I have the answers I have been needing for 16 months!! It all makes sense now. I read up on esophageal spasms and that is exactly what I must be having when I get the serious attacks (They are really powerful too and they scare me)- thank you so much for that pointer

. Why is it that a couple of days on here has given me more answers than 16 months of Doctors and A&E! Why couldn't the doctors at A&E diagnose it ? Thanks Kathleen, you are quite right about the low chance of getting these side effects. That information has been very useful. I will always take my meds now. I suppose these meds are for the rest of my life???

 

[Kathleen M.]

Hard to say about life long. Chronic doesn't mean permanent, just means long lasting. Sometimes even chronic illnesses have some low remission rate so it may be worth periodically weaning off meds (and with the acid reducers you may need a regular antacid for a week or two as you can get some symptom bounce back so you want to get on the other side of that before deciding the symptoms are still there as bad as ever) to see where you are at.