View Full Version : Longterm GERD sufferers or PPI users please respond.
jessieblue
22-02-17, 15:27
Hi, I am having a bad run of my GERD symptoms these last 2 weeks. This follows a period of really bad health anxiety and many different fears of disease and impending doom. I finally thought I was emerging from the darkness of this illness when I have been totally floored my my GERD symptoms returning. I have suffered with stomach acid problems for many years. Have had endoscopy 6 years ago which didnt turn up anything very exciting at all, just a small area of gastritis. I had a barium swallow done at 18 and I am now 53 so shows how long nausea excess acid IBS has been my friend. I usually dont worry too much as its familiar to me, but recently managed to stop my omeprazole 10mg daily as I wasnt suffering with gerd at the time. That was about 3 months ago and I was managing with a gulp of gaviscon when needed or a zantac. I have been worried about taking longterm omeprazole having seen all the reports on health risks so am reluctant to go back on them. As things have flared up again I am obsessing about it more and more. I am so fearful of that feeling of acid rising up that I spend most of the day worrying about it happening. If it does I go into a bit of a freefall and feel I will never get it under control again. I am now taking 75mg zantac daily and gaviscon a few times too. I am scared. I dont know whether to just go back on the PPI as I was well controlled mostly with that but am afraid I will never get off. Anyone with experience or that can just say you understand would be such a help atm. I have worked really hard on my health anxiety and now find myself back to square 1 with no doubt more medical tests to come. Thanks in advance.
Hello.
I have LPR and been on PPI's since last year, I admit now I have stopped them as I feel they are not doing me any good or very little effect, some PPI's help other people alot. I had an endoscopy last year too with no real diagnosis (which to me was good enough), BUT if the PPI's were working for you it might be a good idea to keep on using them.
So yes I understand what you going through.
jessieblue
22-02-17, 16:06
Hi Kay and thank you for replying. Can I ask what you are taking to help with your LPR and how was that diagnosed? No one mentioned LPR to me but I am currently having some throat irritation too. Not bad but the odd croak in my voice and throat clearing. I do have acid type feelings so I definitely have over acidity. I am also confused about the talk to too low stomach acid because I am worried if I lower my acid levels when they are already low then that would cause more problems. I will have another endoscooy if I have to although my procedure was very unpleasant and I have emetophobia so the thought of gag/vomit totally terrifies me. I just feel my anxiety over the symptoms are driving this at the moment but finding it hard to switch off the mind. What were your symptoms Kay?
Both my wife and I have reflux. We've been taking Pantoprazole for years and follow the FODMAP diet. Very few if any issues at all.
Positive thoughts
Hi Kay and thank you for replying. Can I ask what you are taking to help with your LPR and how was that diagnosed? No one mentioned LPR to me but I am currently having some throat irritation too. Not bad but the odd croak in my voice and throat clearing. I do have acid type feelings so I definitely have over acidity. I am also confused about the talk to too low stomach acid because I am worried if I lower my acid levels when they are already low then that would cause more problems. I will have another endoscooy if I have to although my procedure was very unpleasant and I have emetophobia so the thought of gag/vomit totally terrifies me. I just feel my anxiety over the symptoms are driving this at the moment but finding it hard to switch off the mind. What were your symptoms Kay?
I clear my throat all the time even more so now that I have quite smoking for nearly 3 weeks & I also get the high pitched sound and croaks lol....the acid used to come all the way up to my voicebox at times when I was asleep and a sore throat all the time - I went to see an ENT specialist and he diagnosed me with Globus and silent reflux. He recommended sipping on ice cold water to relieve the lump in the throat sensation (which I know you have not mentioned you have, but it is common with acid reflux) - what worked for me was sucking on a hard boiled sweet when I felt acid or the lump feeling.
I was on lansoprazole & omeprazole but decided to stop them as I felt they were not doing anything for me for about 6 months. Anxiety can elevate acidity I get so much of it when I am very stressed.
Please try not worry as you can see from Fishmanpa's comment he seems to be doing well on them but no difference for me (everyone is different)
Hope this helps :)
jessieblue
22-02-17, 19:18
Thank you all for replying. I did have the lump in the throat feeling the other evening and it caused me to panic. I have had it in the past too, I can remember from many years ago even. I worry even tho I know its a form of anxiety. It helps to know others are taking ppi longterm. I got a bit worried having read recent articles about safety. However I must think about my immediate situation as once my anxiety gets a hold it undermines everything. I am definitely super stressed over it at the moment....almost fearing it before it happens and then of course it does happen. I only wish I knew where the off switch was for my brain!
I know its a vicious circle, I suffer with great anxiety but there is a lot of people on here that have overcome this Health Anxiety but sadly I am still trying to.
I've been on Pantoprazole 40mg once a day for 6 months and have had no issues. Only thing I've seen is improvement, alongside regulating/cleaning up my diet. I still get some reflux if I eat a lot of greasy foods or drink sodas, but Tums will knock it right out. My dad was on PPI's for a long time as well.
jessieblue
23-02-17, 10:28
bin tenn do you plan to stay on the pantoprozole longterm or will you try and come off? I imagine unless the cause of the reflux is removed then we will need these forever really? As we get older we will get more reflux as I understand it? I also read that some reflux is normal......something like 60 refluxes a day would be considered normal and we are only considered to have gerd if you have an excess number of refluxes. Not sure how true this is but I guess it makes sense that if you suffer with health anxiety you are likely to be more aware of reflux when it happens anyway.
Kay, I wish I could overcome this health anxiety. I have tried really hard and had periods where I was so nearly over it.....then I just get knocked right back down to the bottom of the hill. Its exhausting.
Kay, I wish I could overcome this health anxiety. I have tried really hard and had periods where I was so nearly over it.....then I just get knocked right back down to the bottom of the hill. Its exhausting.
Me too - its so terrible but I am trying with citralopam at the moment and waiting for CBT therapy.
At this point I have no plans to come off of it. Last time I stopped a PPI the reflux started coming back. I wouldn't take it if I had a little reflux now and then. Practically everyone I know gets it at some point. But mine is bad. Without PPI, it may not be very frequent, but it's hell when it happens.
jessieblue
23-02-17, 18:41
I understand bin tenn, I am the same. While on the meds I feel relaxed and in control. I still would get some breakthough on odd occasions that gaviscon would sort or I would take a second tablet if \i was going out for a rich meal. Now I am on zantac I am more aware because i have to take twice or 3 times a day. Therefore I am thinking all the time about my symptoms. With omep I would just take first thing in the morning and then forget about it. Wish I hadnt bothered to stop but symptoms had really settled down so thought I could cope without. Alas......no.
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