Reflux nightmare

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Ive been on this forum on and off for six months and am still here, with no visible signs of improvement to my reflux, still desperately looking for help. I have seen gi consultant again, who's put me on 600mg Ranitidine and 20mg Pariet with a view to gradually cutting back, which did work before, in fact June and July were pain free. But here I am in the middle of the night again, unable to sleep forpain. I have had nothing to eat since 7pm so why Is there acid

present? Could it be that my LES is now getting weaker? I watch

what I eat, no triggers, plain food etc but now the heartburn isn't

suddenly triggered it just gradually comes on throughout the day

and builds up.  I've raised my bed but still can't sleep.I think my only option now is surgery- I have nothing to lose. My life is in ruins. My GP is sick of me and my Consultant can only offer huge quantities of drugs that don't work, although he he did say I was "on the cusp" for having surgery. Advice please, on any other tips for relieving the pain and for going about getting surgery, where to go etc.

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11 Replies

  • Posted

    Hello Hilary, I don't know what to say to help you because I sometimes feel as desperate as you, I feel as though my doctor is sick of me as well, and the drugs I'm on haven't helped my cough, breathlessness and  continuous clearing of throat, a feeling of a lump in the throat sometimes,  I think I have the silent reflux judging by what I have read on the internet, occasionally the acid reaches my mouth and central chest pain is frightening I was advised by an ENT doctor to take Gavascon before bed, it just caused me to feel so sick I am going to pay to have some allergy testing, I feel as though at my age 66, they just fob you off with drugs, I,m worried what damage this acid is doing to my insides. What options have they given you for surgery,  best wishes Elaine

     

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  • Posted

    Hilary I am. really sorry to read how you are still feeling so I'll. This illness really is so pernicious and also seems relentless. I understand how you are feeling because like so many of our forum colleagues I feel the same.

    I am taking ranitidine and lansoprozole and my consultant as recently added domporodine because he said I need to lose weight before I can have surgery. I think that's just an excuse to save money really. I know you hate taking drugs we all do but what about trying some others just to see if they can help the problem.Having said it for literally years I have finally been told I have a HH so I will definitely try to restrict my diet to lose some weight is that also something you could do.

    With regards to surgery by what I have read its not always successful so don't pin your hopes too much on that. Finally I mentioned the Hiatus Hernia have you been diagnosed with one because if you haven't then keep insisting on further investigations as its taken me three years of insisting I have one to get my doctors to believe me. As I said keep trying the drugs because if you can at least get a decent nights sleep you will feel better for it. Best wishes Ted

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  • Posted

    Hi I've. Been feeling the same way with the breathlessness and something. Stuck in my throat the constant clearing. My throat and cough it scares me. I feel like I'm having a heart attack all the time I was taking the medication for awhile it got nothing better I'm afraid to take it to long. I feel so depressed about this it effecting my daily life. I don't know what to do anymore. I need to talk to someone who's been going through the same thing as me so I can feel allttle better. Can someone one please write me back thank you God bless you.
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    • Posted

      Crystal please take some comfort from knowing that you are not alone as there are many others suffering like you and also hate taking medicines. Being an active cyclist swimmer runner until three tears ago at the he age of 62 I began to get similar experiences as you except for the heart feelings. Some years later I have been diagnosed with a hiatus hernia so I wonder if you also have one. Like you I hate taking medicines because I fear what they are doing to me but via this forum and the advise I have been given I have now convinced myself that there is no alternative. In fact today I go from taking two medicines to three so what can I do.The only advice I can really offer is to keep using this forum as a support tool because there are so many caring members that can offer you good advice. Best wishes Ted
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  • Posted

    I can't say that I can definitely help, but I could probably write a book full of complaints covering my last couple of years. Had lots of wasted trips to the doctor, tried the usual drugs but can't tolerate them, and have had many agonising nights. In recent times I've been better overall but every day is gamble in terms of what to expect.

    There have been a couple of changes I've made, they seem to have helped lessen the level of pain and discomfort. The primary change has been my job, specifically in terms of what it means for me physically. I used to drive every day and it was growing increasingly difficult to do so, and I believed (correctly) that the sitting position was making my symptoms worse. I now do a job where I stand and walk and it definitely made a difference. If you are spending your time at home or work sitting down a lot, if there's anything you can do to change that I'd recommend it.

    Although I can generally tolerate dairy I switched to lactose free milk a long time ago. I used to go through pints of milk but had lots of acid and didn't realise I was making things worse. With lactose free milk I don't experience such high levels of acid and can use it to sooth my symptoms without worrying about the acid problem getting worse.

    I started using apple cider vinegar with my meals after reading these forums etc, and I do think that anything that helps with digestion is beneficial. I could barely eat a normal sized meal without spending hours in agony as though I'd stuffed myself. I don't get that feeling anywhere near as much.

    in addition I decided to try high PH water, even though I don't have LPR, it seemed logical to use a method like this to combat acid. Understand I usually struggle to drink water as I find it makes my acid worse, but I've been able to do this without any problems so it might be worth a try.

    I've strruggled to ID dietary triggers but in general processed foods are not good. I began eating salad sandwiches (wholemeal) for lunch, drinking the water. Sometimes for dinner, drinking the apple cider vinegar. I've been able to tolerate a bit of tomato and onion with this.

    As I looked around for other natural help because I can't tolerate the drugs I discovered another aid for digestion I haven't seen mentioned on these forums. Its called IntestCare, a blend of fruit juices and turmeric which is simply to aid digestion. I feel that using this and the ACV is making a difference on that front and would suggest trying it out.

    Because I have oesophagitis my chest hurts a lot. Milkshakes or ice cream can help to temporarily sooth that pain because of the combined cooling and coating.

    Finally, I have a prescription for Gaviscon Advance. At one time I relied solely on this stuff. Not a miracle cure but that coating effect was key to helping stem the pain. If you have not tried advance please do as it is much better than standard gaviscon due to the higher viscosity.

    Thanks to the combination of other things I don't need Gaviscon all throughout the day and night as I used to, but I always have a carton of lactose free milk and a bottle of Gaviscon for when I need to get on top of the acid feeling. I take both to bed on the nightstand so I can use them if need be during the night. 

    For sleeping I have also generally found lying on my left side is best.

    I some of this might be useful to you. Good luck.

    One final thing if you are considering surgery, please be aware there are now three options for treatment and Nissan Fundoplification is the most common but the most severe and irreversible. Other treatments are the lynx collar which can be removed, and there's a radiotherapy treatment I forget the name of. So please consider your options wisely. The other two are less common but personally I'd rather avoid surgery on my stomach and would push for an alternative first.

    Cheers

    Al

     

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    • Posted

      Thank you so much for the advice. Where can you get the ACV and the other things you mention? I am going to investigate surgery. My friend had it and she's fine now. I can't go on like this , life isn't worth living.
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    • Posted

      I have and still sometimes do feel that way, I'm sorry you're having to experience that.

      This reminds me of something - when I was at my worst I was experiencing spasms, twitches, heart palpitations and spent a few nights in hospital because of it all. With no help from the doctor I figured out that the cause was excess calcium. At the time one of the mistakes I was still making was popping over the counter antacids like Rennies. If you're doing the same try to avoid them, cut them out or wean off them if some of these other things help. I used to experience huge stomach spasms and the location and pain made it feel I was having heart attacks, and it always happened when I was in bed at night. Those spasms combined with the palpitations made me feel I was dying. Horrible stuff which was relatively easily remedied.

      You can get ACV and the IntestCare at a health food shop like Holland & Barret. ACV can also be bought online and some shops have it, like Tesco. The recommended type is one that contains 'mother' from the apples, but normal stuff will still be useful.

      For the PH water I found the cheapest and most convenient way was to order some alkaline drops online and use these in water to alter the PH (I use bottled spring water usually). The drops can be carried around and used in any water you are drinking so it's more practical.

      Al

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    • Posted

      Forgot to say, I take the acv in water with some honey, which makes it more palatable.
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    • Posted

      Hi Alizarin

      I’m new to the forum and in early days of GERD, after a hospitalization. Are you still checking in? How are you doing? I need some positive encouragement!! 

      Thank you,

      Julia

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  • Posted

    Thank you, I got all the things you said but I have some questions. How much and how often do I take them? Do I take all of them as well as the medication. I have to try medication for a bit longer because it worked and for June and July I had no pain and could eat normally. Then it came back
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    • Posted

      Hi

      A lot of people will take ACV 3 times a day with meals but I find it a bit awkward especially because I use the IntestCare. So I use the IntestCare during the day then the ACV with my main meal in the evening. This is partly up to you, but the IntestCare instructions are to take 20ml with meals. So far I haven't used both together so can't say if it matters. A general guide for ACV is a tablespoon in a glass of water, some people use more but will build it up over time.

      I drink the water as and when throughout the day and try to make a point of having a bottle with my lunch, but because I've been a bit better I sometimes revert back to tea. I've seen people say they've used the drops in tea as well, haven't tried that yet.

      I don't take medication because everything I tried made me feel even worse. This is a tough call but I'd suggest sticking with the meds, give the other stuff a bit of time to see if it makes any difference. You'll know better than anyone if it feels right to change that up later on.

      I don't get severe reflux throughout the day and I feel better after meals. I also get more sleep than I used to. Some days are worse and I can feel a bit bloated but nowhere near the discomfort I used to suffer. If it has the same kind of effect you'll be able tell but it isn't going to show immediately. Might take a week or two.

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