Still having trouble

Hi, derek, thank you for replying and bringing a smile to my lips at the thought of your bosom! You sound like you know what you're talking about when it comes to acid suppression 20 years! Which ppis did you find the most useful and did you never have any side effects? I really do not know why I react to them like I do. They've said it could be acid, or non erosive reflux or just hypersensitive gullet which requires a completely different treatment. Had gastroscopies last one 2019 January but last barium was 2007 so another one might be in order as I get stuff spasming into throat. No answers why or what I've got though. ENT saw inflammation in throat and said LPR, another gastro said dysmotility and GP doesnt know what to do. I managed for ages just with Advance and low acid diet. Throat is awful now and I have to liquidise food a lot of the time. Digestion usually good except when I try to suppress acid then I get burning. All my family and friends who have indigestion swear by the ppis I think they think I am making up what happens! I admit that I am extremely anxious about medication after so many making me so ill. Sorry to hear about your honey episode that seems popular if a bit pricey. How about you? Have you a hernia? Are your symptoms totally controlled now? I read such horror stories about ppis and how once you are on them it's impossible to get off them that this fuels anxiety, I think. I did hear of a product in the States which is like a totally natural mint chocolate Gaviscon! Best wishes

They still get tender and swell with certain brands. The problem with the NHS is that GP's have to prescribe generic versions and pharmacies have different makers ones each month. In fact I've had two different makes on the same prescription. I had a breast X-Ray one time when they were worse than usual and my wife was threatening to buy me a training bra.

I've had a hiatus hernia for over twenty years but it seems to vary in size. My symptoms come and go and at the moment I'm taking PPI's on an as required basis along with Gaviscon although I prefer Bisodol.

I've always eaten a very bland diet but it does not seem to make any difference .

Manuka varies a lot in quality/ strength. When we went on holiday to NZ I couldn't believe the vast areas of them we passed through.

Chocolate Gaviscon would be handy .

I know how your wife feels, derek - my other half had the same problems with the hormone implants after prostate cancer. I quite envied him until they found a lump but luckily it was benign. You make me feel that it is possible to cope maybe once the right medication is found. Think I could manage on an as required basis it's the having to take something which is so hard to come off if it does not suit. Do you find that there is a difference between different makes then? I didn't know that. It must be frustrating. I might give Bisodol a try, I didn't even know that was still around. I used to sell it over 40 years ago. Struggling at the moment with awful hyperacidity and miss my Gaviscon so it's nice to hear from others who know what I'm on about. My husband pretends to be deaf when I start whining. Nice to chat.

Sorry to hear bout your husbands prostate cancer. My PSA went up to 9.8 and I had two negative biopsies. My high PSA was just caused by a very large prostate and after laser surgery it came down to 0.74

Different makers use different binding agents in the tablets and that is usually the problem. I was always better with Nexium but now NHS GP's prescribe generic varieties that come from around the world and pharmacies the cheapest.

With BP meds I have complained that some do nothing for me. The MHRA ask for samples to test but only say that the amount the drug is within the correct range.

Everything varies nowadays. I bought the top make of AA rechargeable batteries and they were too fat to fit in my Magna Lite torch.

The makers said:

There may be small size differences between different types (sub-brands) of batteries that are made at different locations, and some may be closer to the upper limit of the IEC/ANSI range, while others may be closer to the lower limit. If the battery compartment of your device was not designed to accept the entire range of IEC or ANSI specifications, some batteries may not fit.

Well that sounds so complicated! Interesting about the different brands of drugs making a difference though. You seem to have been in the wars healthwise, Derek but you don't sound sorry for yourself. Did it take very long to feel "normal" again once you were established on medicine? Can I ask when you take the ppi on an as required basis how do you know if it's going to be a bad day or not if you have to take the pill before breakfast? I am sure that I'll have to take something soon as the hyperacidity is really bad today and frightening me. Thanks for all your messages it really helps.

As I said this all goes back many years often also with indigestion symptoms that are difficult to distinguish from a heart attack. One morning in 1993 I really thought it might be and considered all the options and phoned my GP. His receptionist asked what the problem was and spoke to him. She said he said to call an ambulance right away. I ended up in hospital for five days before they decided it was not. Doctor later apologised for panicking 😃

I did get relief for about six years or was it coincidence in 1983 after going to a homeopathic doctor who was also a GP. He did a thorough examination and prescribed two remedies. One was a powder to take twice (forgotten its name unfortunately ) and the other carbo veg to take on a regular basis. He may have been a charlatan as I later read that he was selling prescription to addicts. Later he was jailed for selling forged passports.

We have since tried homeopathic remedies for other things . Some worked other didn't. My present GP is very open minded and is not against them.

At present I'm just taking a low dose PPI about twice a week usually in late afternoon if I feel it is about to start up other times bisodol. I'm not a particular fan of gaviscon as I find it does not cover all of my symptoms.

I did in the distant past ask about fundoplication but nearly all were against it. One said fancy never being able to burp or be sick again! Way back an aunts husband had but it was not really a success.

Thank you for all the information , Derek. It is very interesting to see how other people cope. Your homeopathic doctor sounds a bit of a character. I think you must have got to him before he went astray! I did not know that you could take a ppi in the afternoon like that. It sounds like you are much more in control like that. My symptoms were always just throat. It would suddenly get hoarse and severely sore. I had no heartburn or indigestion. I feel that I have been messed around really and have lately started with heartburn too . It is difficult to say when it is going to strike so difficult to preempt it. Gaviscon Advance worked for couple of years but ppi seemed to make it worse, shooting burning stuff up into throat. I have since developed reflux or regurgitation too. I assumed it was weakly acidic reflux or something. At every point I have consulted doctors but they say now that they can't help me unless I have the manometry which I am dreading. My daughter had it done when she was a young girl and it was upsetting for her and me. I don"t think I could go under the knife although if the alternative is ppis at the moment I am wondering! I know about all the other surgical stuff they can do now but it's still major intervention. I have read that it only lasts for a few years and works best for those who found ppi successful.

When the benefits from the homeopath wore off I went to another one twice but she was not a doctor and did not know much more than I did.

I had a manometry a long tie ago. It was done by a young Indian doctor here on an exchange visit who had not done one before. He asked the nurse to lay out what was needed and read up on the procedure from a book. I should have left at that point.

I've taken PPI's at morning noon and night . I've not noticed on the leaflet any particular time.

Thanks, Derek, I won't ask how the manometry went ! I am stressing out because my sore throat is worse than ever tonight. I can't say I noticed much difference whilst taking the Lansoprazole last week but it made me feel so poorly in other respects that I perhaps noticed less? Hope you get some rest tonight.

I wish I could think of something new for you to try.

I have two lady neighbours who were overweight and got themselves off PPI's through diet alone.

You have done loads to help me. It is very kind of you to take the time and trouble to reply and I am very grateful. Everyone has been very supportive and I am glad I made the decision to post on the forum after psyching myself up to do it for 3 years! Hope I can help someone in my turn. Better off telling them NOT to follow my example! Best wishes to your wife and yourself, Derek and look after yourselves during this worrying period.

Bless you for replying Gillian. I did wonder if it was that since I've got dryness everywhere else but GP said very rare and they found gastritis after endoscopy number 5. I am just feeling so sorry for myself. My gastroenterologist said he didn't think this was an acid problem but that a manometry was needed to be sure. I just feel so poorly every time I"m on tablets. Don"t have any stomach issues normally except the odd bit of heartburn but once I take tablets I get loads of digestive problems and burning stomach. I've retried Lansoprasole because I am a bit scared of trying anything new during the present situation. My GP doesn't seem to believe in rebound but I'm sure that underdosing on Ranitidine gave me gastritis. The Gaviscon has always been a great medicine for me and now that's burning too. Seen so many doctors and some have said they can't help me which makes me think that my life is this from now on. Sorry to moan on. I expect you've got all your own worries to think about. How do you cope day to day? Is it just bland diet and Lansoprazole? Are your symptoms in your stomach and throat or just stomach? Have you any tips that work? Love to hear how you manage

well yes I have to live with a bland diet and I'm also having throat and chest burning I cant take Gaviscon now it burns even more I can not understand it because I've used it for years and it was the only thing I took for years before glad to take the dreaded PPI medication I've had endoscopy done 3 times and the only thing that as ever been found is damage the acid as done been told its stress .

Thanks, Gillian. I am so sorry you're having to deal with awful symptoms too. You sound to have had a very similar experience to me. It's very isolating when everyone I know seems to get on really well with their medication and have some sort of a life. Anxiety makes it all worse but I don't know how you can't be anxious when you feel so poorly and it's hard to swallow, you see the weight dropping off and every medicine seems to make it worse. It's lovely to talk to someone who knows what it's like. If I get any answers or find a way of getting Gaviscon down again I shall let you know. Glad the Lanso is helping you though. I've only taken 5 and already Iam feeling terrified. Throat and regurgitation just as bad but now I can feel acid and pressure and heat in chest at about teatime and on waking which was never there before. Feel they're giving me more acid? Almost feel addicted to them. Scared to take them and scared not to. What a mess. Hope things get better for you.

thank you I hope your symptoms get better and you find a suitable medication it's a horrible condition to have to live with either and I think more investigating should be done for this illness because there are do many people that have to suffer with no real effective meds to eliminate the condition and why we get it in the first place when you see other people eating what ever they like and have no problems with digestive issues.

You are exactly right, Gillian. I am in a right mess. GP told me to stop tablets cold Turkey as they were making me so ill. He didn't think I would suffer rebound after 5 doses. This morning I am in agony, can't even eat for the burning. So scared. I always get it wrong. They seem such powerful drugs. 15 mg seemed to give me more acid than when on nothing. First suggestion was to double but then they said to come off. Only thing they could do was try yet another ppi or an antidepressant. Have you ever had this or were you sensible enough to stay on the tablets. I feel I might end up in a and e today and I'm scared of going. Sorry for moaning.

Have you ever had help for it at A&E ?

They have always been very kind to me but regard it as a chronic problem and say they are there for acute problems only. Several times I have had panic attacks when I couldn't cope with the pain and they put it all down to anxiety. One Christmas when I developed a severe burning stomach after 3 weeks on Ranitidine the doctor saw the state I was in and the fact my clothes were 3 sizes too big and booked me in for a two week wait gastroscopy. Once I was told to go home and drink milk! They work so hard and do such a difficult job that I do not like to bother them but sometimes 111 tell you to go. Best wishes.

My problem started one Christmas many years ago before I had even started my dinner.

My wife has had problems as well and has had three endoscopy's over the years. She has been to A&E twice in the past year and each time was kept overnight and had a lot of tests. They then said that she should have another endoscopy but she now has difficulty swallowing and the last one was difficult. She spoke to her GP and he said that there is now a special CT scan she could have and would refer her so she cancelled the endoscopy. The hospital twice told the GP that patients could only be referred by a consultant. Took five months to get the appointment. Totally useless retired consultant now working as a locum would not refer her either and refused to read her short half page summary of her problems over the year and asked questions that did not cover her problem. We can't easily see anyone privately now as our local private hospital is now a fertility clinic 😃

Morning, Derek, so sorry to hear about the trouble you and your wife are having getting her some help. It seems to be pot luck where you live and the facilities and people available? I am glad that A and E tried to get to the bottom of things but it seems to take ages for appointments etc to get sorted sometimes. Endoscopies seem to have got better over the years but I am not sure if your wife would agree. My first one was flat on my back without sedation after that I saved up and managed to have it done privately which meant it wasn't such a rush. The last emergency one terrified me as he said the referral doctor thought it was cancer and I had to have fentanyl as well as normal sedation and I still came round when he had to retroflex the scope. I was lucky though and all he found was gastritis. I didn't know about the special CT scan but I sympathise with the experiences you have had. It's frustrating and upsetting if , after waiting a long time , when you get to see someone they do not seem to communicate well. We have had just the same thing happen I was told to try acupuncture and hypnotherapy and the next appointment was told I needed a fundiplication! It seems such a mess up. We have spent a lot of money trying to get me sorted and, apart from speed, it's not really helped. NHS is brilliant but they're overstretched and expected to do such a lot. I hope your wife has some proper help soon. I have Fortisips for bad swallowing days but can only manage the vanilla one and that burns as well!

hi Jenne I have stayed on the meal warrior to take more and then to drop down again but there was no real improvement with upping the dose I do take a antidepressant but low dose at night to help me sleep , I hope your having a better day today yesterday was bad for me

I had not heard of Fortisips.

I was very dubious about having an endoscopy as an uncle went into cardiac arrest and died during his. I survived mine but never wanted another. A GP at the last practice we went to who was not my usual one did talk me into agreeing to one. I changed my mind and went to discuss it with my usual GP. He said that one of his partners in the practice had also gone into cardiac arrest and died during one. He said that he would not have one and my present GP is of the same opinion.

One of the problems of living in Sussex is that Eastbourne and Hastings have moved some specialities to the other hospital. Major cardiac surgery is at Brighton and at evenings and weekends emergency patients can be sent whichever one is taking patients.

Where there are still duplicated departments they will send you to the one with the supposed shortest waiting list. MSK (Musculosketal conditions) has been semi privatised to several locations and they always seem to allocate you to the most difficult to get to and are surprised if you complain.

My wife had acupuncture for something in the past. For the past few years she has had some facial numbness and mouth pain when eating and has been going to Maxillo Facial. One suggested three acupuncture treatments to the face and head. The first one was to the lower face and the second higher up. After that one she felt a bit light headed coming home on the the bus. The next morning when she got up everything started to go round and she passed out falling awkwardly cracking two ribs and fracturing a vertebrae. As she has osteoporosis and two

earlier fractured vertebrae this was a major setback that she has never really recovered from.

With private medicine locally you in the main see one from the NHS hospital moonlighting before or after his day job and always late and in a hurry.

Now of course there is no one to see. James Cook hospital in Middlesbrough has sensibly spilt itself into two sections one coronavirus and the other normal. A friends daughter got a cardiology appointment there within two weeks. Of course the cardiologist though that her several symptoms were caused by covid that had not been picked up in two visits to A&E and one to a specialised clinic.

Thanks, Gillian, sorry you had a rough day yesterday. Does anything trigger it off or is it just random? Interesting that upping the dose didn't change anything for you. Does the antidepressant help at all? I've been offered Imipramine Amitryptiline or Noratryptiline not sure about the spellings! Take your pick but they said they'll only work if it's a problem with hypersensitive gullet. I was warned they would "wipe me out" in a morning so I thought I'd hang on for a bit. My family relied on me for childcare and I couldn't manage half asleep. Hope you have a better time tomorrow. I can't sleep for the throat tonight and feel it's my own fault for not staying on the tablets. I always mess up. Take care.

Fortisips is a bit like Complan but it is convenient to take with you and replaces a meal if you can't swallow or manage food. They also do little puddings. Scandishake is a high calorie powder that you can add to milk or make a milkshake out of. I was prescribed them for when I can't swallow and to try to put a bit of weight on. Not sure whether they might be helpful for your wife.

They seem to do endoscopies here now before you even see a consultant. I found the last one created lasting pain and seemed to make the reflux worse. I had heard of the cardiac arrest problem it didn't help my nerves! It must be lovely living in Sussex but it sounds like you have just as much trouble with access to hospitals etc as everywhere else. So sorry to hear about your wife's awful time she must be really fed up. I know what you mean about the moonlighting. It is our experience also. The James Cook idea seems a good way to coax people back to A and E. I noticed one of the local hospitals doing the same. I was due to have appointments the week lockdown began and have suffered but I am not on my own and at least I am still here to tell the tale.

hi Jeanne yes something did trigger it but most the time I font know what does I divided to have a rare treat a griiy scone with cream and jam I did try to scrap most the jam off ad I find that's a big trigger to me same as chocolate in fact anything sweet really , I did try the above meds you have mentioned not I didnt like them found they have me head aches and I've read posts of people having problems coming off them so I'm taking another antidepressant mite not be as effective as the others but I suppose it helps a little with dealing with this horrid illness and help with the depressive side of it .

Thanks for getting back to me, Gillian, it really helps to know how others manage. So sorry you can't even eat a scone without some awful payoff, it's not as it it's a chocolate gateau or anything . Sugar burns my throat too just wish I could RIP it out sometimes! Thanks for telling me about the headaches on those particular drugs and the difficult withdrawal. I am a bit worried about trying them too. They say they have reflux as a side effect and can make glaucoma worse . I had a retinal haemorrhage and am having tests for glaucoma. Glad your low dose antidepressant is helping a bit. I have friends who take Citalopram and Settraline and they say once they got over the first couple of weeks they helped to take the edge off the anxiety. Keep smiling.