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GERD/acid reflux. feeling desparate :-(

(68 Posts)
sunshine05 Wed 16-Nov-16 09:57:45

I've had acid reflux since September, I was on omeprozole and now I'm on Lansoprazole. I've gone from 30mg to 15mg and I wasn't suffering on 30mg but now I'm waking up every morning with a burning throat. It's making me not want to eat at all and I'm already borderline underweight. I'm miserable. I don't want to go up to 30mg again as I feel like I'll never get off these damn pills if I don't reduce them. Anyone tried reducing their dosage? Does the rebound calm down after a while?

Any other ideas/diets? I'm tempted to try low carb diet to see if that helps. Nothing I eat seems to make it better. I'm trying to limit caffeine and only drink once a week though haven't had a drink since this throat burning at all. I also have IBS so avoid wheat and only have milk in my tea/coffee. I'm also taking apple cider vinegar but it doesn't seem to help much.

sadie9 Wed 16-Nov-16 10:43:55

I taken 20mg of Omeprazole daily now for a few years. I just had to resign myself to the fact that I am protecting my stomach lining by taking the tablets versus struggling relentlessly with stomach acid because I didn't want to be 'on tablets' for the rest of my life.
I tried all that for the first year or two - changing my diet, not having coffee, not having wine, not having chocolate, etc etc. Also tried reducing the dosage and/or stopping the tablets in hopes I suddenly got 'fixed'.
And to be honest none of it really made a difference.
My digestive system seemed to change in my late 40's around peri-menopause/menopause.
So now I just take the tablet each day and eat what I like and have very little symptoms, unless I drink wine on an empty stomach or eat a rich dessert very late at night. In which case I take a couple of Rennie's as well.

gingeroots Wed 16-Nov-16 11:17:21

I agree that you may have to resign yourself in that taking the tablets protects your throat .

Three suggestions in case you've not tried them

sleep propped up either with pillows or by raising the head of your bed

don't eat after 6pm

use Gaviscon plus ,the one with the alginate .It forms a "raft" on top of your stomach contents which does help .

sunshine05 Wed 16-Nov-16 12:30:13

Thanks for the replies. I have been propping my head up but I did eat really late last night- around 9.30pm so maybe that hasn't helped. Hubby will just have to eat on his own sometimes if he's back late. I'll try eating earlier and see if that helps. I just feel like nothings working. I really don't want to be on pills for the long term and am convinced I can 'fix' it but maybe I can't. I don't get why I've suddenly got this issue when I was fine before. I'm 39 and the only people I hear that are on pills long term are older. I've got Gaviscon plus which does usually help with indigestion but doesn't seem to be helping with the burning pain I'm getting at present.

sadie I feel like that, i've tried all sorts and nothing seems to work and I'm feeling like saying sod it, I want a life where I can eat chocolate and drink wine so maybe I just need to accept there's no magic cure. Thanks for taking the time to reply!

slightlyinsane Wed 16-Nov-16 13:00:59

Have you thought about allergies?
Often reflux is a symptom of an allergy/intolerance. I'm not sure from your post what you've tried cutting out fully. I'd be tempted to completely cut one thing at a time to see if it helps. Dairy is a big one to cause problems. If you do want to try it you have to be careful and look for the hidden ingredients.
My kids are dairy, soya and egg free, you'd be surprised what you find milk in

DashboardLightParadise Wed 16-Nov-16 13:12:59

I assume you've been tested for helicobacter? Have you had the camera down your throat yet?

I've had a hiatus hernia from my early 20s so been taking tablets for many years. Various meds but currently in esomeprazole 20mg and can take an extra one if needed according to the gp, only I've to inform them if it's a regular thing.

Not wanting to scare you but left untreated acid reflux can cause serious issues for your throat so best to try and keep it under control. While I'm not particularly happy popping a pill every day, if avoiding other conditions means tablets, so be it.

Buzzardbird Wed 16-Nov-16 13:19:14

Been on Lanso for 20 years but GP just moved me onto a better one as when my prescription was made smaller I also suffered. It got really bad and I had two suspected heart attacks which turned out to be spasms.

I asked the GP about surgery (my GP is a bit of an expert on this condition as he has it and also had a suspected heart attack that turned out to be spasms) he told me that these tablets are or life and will drastically reduce your chances of getting stomach or digestive related cancers and ulcers. The surgery he said was not worth the risk as the benefits of the tablets are huge for your life. But, they are for life. You will not be cured of GERD and you can only 'control' is by seriously limiting your diet.

There is no reason to suffer or have a diminished enjoyment of life.

NanTheWiser Wed 16-Nov-16 15:21:35

I used to suffer quite badly, but not to the extent of prescribed meds. Tried Nexium but it disagreed with me, also ranitidine. Going low carb cured it! The sugars in carbohydrates can set up inflammation in the body, especially if you are insulin resistant, which inflame the oesophagus, and cause acid reflux. Why not try it for a few days and see if there is any improvement? Being on PPIs long term is not good for your health, due to malabsorption of vits and mins, and the possibility of B12 deficiency.

gingeroots Wed 16-Nov-16 16:17:16

OP - you need to prop up more than your head .Or did you mean head of the bed ?

Either way ,I didn't find propping up the head of my bed worked .It really has to be the whole area from shoulders down to about bottom of ribcage .

Takes some working out .I use masses of pillows and sleep in a long sleeved fleece . Some prefer a duvet folded into 4 behind them .

madmomma Wed 16-Nov-16 21:00:48

I used to suffer a lot from heartburn and the weird thing that got rid of it in the end was osteopathic treatment. I went for a different problem with my pelvis, but when they looked at my spine there was a little compression happening at the 5th thoracic vertebrae and when it got moved the heartburn disappeared. If I feel it creeping back, it inevitably disappears again after a tune-up at the osteopathic clinic. Might be worth a try.

sunshine05 Wed 16-Nov-16 22:35:59

when your computer shuts down without warning mid-reply. ARGH.

slightlyinsane I have a wheat intolerance and slight dairy intolerance but I'm not coeliac (had blood tests) but usually I can control my ibs symptoms by cutting out bread, pasta etc and only having milk in my tea/coffee. I don't know why I suddenly have bad GERD/acid reflux when it wasn't an issue before.

Dashboard My doc doesn't think I have H Pylori as he says my symptoms don't match so I haven't been tested for it. Also he's persuaded me to take these pills another few months before having an endoscopy (due to my age etc he doesn't think anything sinister is going on). I get what you mean about taking the pills but I'm worried it's worse because I've reduced from 30mg to 15mg. I googled it and some people say it can take weeks (or even months) for the gut's over production of acid due to reduction of the meds to settle. But I don't know if thats what it is or whether I need to up my meds again! How would I know?? If I can stay at 15mg obviously I want to wean myself down to that but I'm getting the burning of acid and don't know how many more days I can put up with it.

NanTheWiser that's interesting. I've read about low carb and acid reflux but wasn't sure if it was just faddy stuff with no scientific substance. I did try one day of low carb and I got bad diarrhoea so that kind of put me off. Maybe it was a coincidence but i do get ibs and anything too high fat can trigger it so it's difficult to do low carb without upsetting my tum. Funnily enough I did start getting sore/dry cracked skin at the side of my mouth that only vitamin supplements advised by the doc cured and that's a B vitamin deficiency symptom isn't it? Maybe I'll try low carb again (though god it'll be hard, I love my carbs!) and see if it makes a difference.

gingeroots thanks for the tip, I'll try and prop myself up better. It was pretty uncomfortable for my neck only propping the head up

madmomma thats really weird that an osteopath helped! Funnily enough I get a sore/twisted 4th vertebrae that I have to get 'clicked' every now and then. Maybe I'll book it in. I can feel it hurts when I press on it so I'm sure it's due for a click. Anything is worth a try.

sunshine05 Thu 17-Nov-16 13:17:31

I've been reading up more today on carbs etc and found some interesting research and info on why too many carbs/sugar etc can cause reflux.

'Carbohydrates and Autonomic Dysfunction

There is accumulating evidence that the excessive amount of carbohydrates (sugars and starches) in our diet is impairing the ability of our autonomic nervous system to function correctly. The exact mechanisms are unknown but excess dietary carbohydrates result in excessive sympathetic and diminished parasympathetic autonomic responses.

As we continually consume excessive carbohydrates, a diminished response of both the sympathetic and sympathetic components occurs leading to a generalized state of autonomic dysfunction. Autonomic dysfunction is often experienced by us as common physical ailments such as heartburn, constipation, bloating, abdominal cramps, fatigue, lightheadedness, erectile dysfunction or frequent urination.'

also this research (although on obese people, the results look promising

sunshine05 Thu 17-Nov-16 13:19:19

Also, this link with gluten and acid reflux. I do seem to be sensitive to gluten but my blood test for Coeliac did come back negative. I might try to be more strict with cutting out all gluten for a while and see if that helps

niceupthedance Thu 17-Nov-16 13:29:46

I suffered terribly for over 25 years; it disappeared after I had my son so I think he must have knocked something back into place. What helped and still does help is not limiting stomach acid but making more of it. If I get acid reflux now I take a shot of apple cider vinegar and it knocks it dead. I used to eat a box of 96 Rennes per week so I sympathise.

Brillig Thu 17-Nov-16 16:06:41

I could pretty much have written your post, OP. Also had a massive flare of reflux in September and had a thread on here about it as I was so miserable and worried (waves at ginger). I did have the camera test and they found only a 'small' hiatus hernia. I'm still grappling with the symptoms and wondering if I have this for life now, as if so, it's pretty bloody depressing.

I've cut out tomatoes, anything spicy, anything carbonated, all alcohol, have gone gluten-free. Basically no fun. But the lump in the throat seems to be gradually diminishing and I hope it might get to the point where I don't feel I'm condemned to a dreary future.

Btw I don't usually get heartburn/indigestion - I seem to have what they call 'silent reflux' (self-diagnosed however, as gps don't seem much interested and just push omeprazole my way. Am on a double dose - 40 mg daily - for a month as per consultant's suggestion post-gastroscopy).

sunshine05 Fri 18-Nov-16 08:15:52

Brillig its so nice to hear from someone going through the same thing. Wow so you had a quick referral then for the endoscopy if you only got symptoms in Sept? My doc keeps fobbing me off as I think he thinks there's nothing wrong. I will see how it goes but if there's no improvement I'll be back demanding one! I had the 'silent reflux' type too. A lump in the throat, coughing, a kind of globus feeling/some mucus and having to clear my throat to talk. But when I reduced my dosage from 30mg to 15 I had horrendous burning that wouldn't go away. I've now gone up to 30mg again after 4 days of pain and I'm so upset I feel like I can't get off them. How old are you if you don't mind me asking? I'm 39 so a bit young for a chronic GERD condition. It seems like half mum's friends all have it and she told me not to worry and just keep taking the pills- some of her friends have been on them for years! So do you think the gluten free diet is working? I also have IBS that comes and goes and so have cut out pasta and pizza and bread anyway as they're triggers for me, so cutting it out completely shouldn't be too bad for me. I'm keen to try low carb too as a lot of people have had success with their reflux going on that but I can't really do both (gluten free and low carb) as I won't know which one is working- hubby pointed that out after I had done low carb for a day!) and god I was hungry!

I'm mostly worried that my 'burning' was a rebound from reducing my dosage and that every time I try to get off it I'll suffer awful burning. Esp as there are so many people saying how evil PPI's are and how they just mask symptoms/make you feel ok and don't cure the problem.

Cabawill Fri 18-Nov-16 08:31:46

Have you looked at the symptoms for LPR? I was diagnosed with GERD but realised after a while that the worst part of it for me was the burning throat and post nasal drip which sits more as silent reflux.

When I used to have a flare up I would go hoarse and have a cough for 2-3 weeks at a time. Now I take a Nexium and drink alkaline water for about 3 days and it clears it up.

Just a thought. Hope you work out what works for you soon

ChuckGravestones Fri 18-Nov-16 08:38:58

I first had it when I was 12. I am now 49.

I take 1 Nexium every other day and that seems to keep a lid on it.

I also - when am having a bad attack - take apple cider vinegar to knock it back. I also can't eat after around 8pm, so try to have my evening meal as close to 5:30 as possible, 6 at the latest.

I didn't get it when I was doing slimming world - as that limits the fat intake. Which was nice.

gingeroots Fri 18-Nov-16 09:18:39

The trouble is that acid reflux is likely to be the symptom of a hiatus hernia and (AFAIK) the only way of curing that problem is major surgery .

Instead of thinking that taking PPI's is masking the symptoms why not think of taking them as managing /dealing with the symptoms ?

I understand that you may prefer to manage the symptoms with a more natural approach - diet ,not eating late at night before your body is put in a supine position and gravity allows stomach acid to flow into your throat .
But please ,if these remedies aren't effective or are hard to achieve ,think seriously about balancing the concerns you have with taking PPI's with the very real danger of the acid damaging your oesphageous and the damaged cells becoming cancerous .

I've had oesphageal cancer ,major life changing surgery and chemotherapy .Chemotherapy is a toxic drug and kills the cancer while also causing other damage to your body . PPI's are a much less dangerous drug - I wish I'd taken my acid reflux more seriously and I wish I'd been prescribed PPI's alongside the diclonfenac and ibroprufen I took for frozen shoulders .

Brillig Fri 18-Nov-16 11:25:08

sunshine I've got a few (almost 20 gringrin) years on you so I wholeheartedly sympathise. It's utterly miserable for you.

I did manage to have the gastroscopy v quickly because basically I went a slightly roundabout route - I've had vague, odd digestive symptoms for well over a year and was referred before, but waited so long for the referral that all the symptoms vanished by the time I was seen, so they didn't want to do the procedure....understandable, I suppose, but in hindsight they might have spotted the hiatus hernia if they had done it then. So when they came back so badly I tried phoning the consultant's secretary (I had been re-referred by the GP) and got lucky with a very last-minute cancellation slot.

I'm coming round to thinking that this all takes a lot of time and the PPIs might need a while to calm things down for you, especially as you're understandably feeling stressed by the situation (I know I am). Maybe give them a while and decide to not worry - easier said than done, I know - then review things in a couple of months?

Personally I felt in Sept that I'd never get any better but I realise now that it does seem, very gradually, to be easing off a bit, and I'm less stressed about it. I'm just taking the omeprazole as directed for a month and then I'll decide the next small step.

Have some flowers though, it's horrible.

sunshine05 Fri 18-Nov-16 14:04:50

Cabawill just looked up LPR and yes that sounds just like what I've got though I do have some burning of the throat (but more when my dosage wasn't enough) which it says isn't a symptom of LPR? It's so confusing. I think I'll print this out and show it to my doctor. I hope it is LPR in a way as it says it doesn't lead to other more serious issues like Barretts oesophagus or cancer.

gingeroots I'm so sorry you had to go through that, how awful for you. How long did you have the reflux before getting it checked out? I am concerned about acid damage hence why I started taking a higher dose after 4-5 days on a lower dose as I was worried about the acid burning my throat. I will have to go back to my doctor next week as he wanted me to go to a lower dose and said the double dose was 'fine for a few days' but I can't reduce it without the burning :-(

Brillig I think you're right. I am a complete worrier. I obsess and worry over things like this, I try diets and when they don't work I try something else. I'm impatient and worried! But as someone else said to me the worrying is probably only making it worse! I'm sure part of the reason I have it is due to stress and anxiety. We're having an extension done and a month or so ago the neighbours from hell next door were threatening legal action and my stress was off the scale, I was a wreck so maybe that's why it's been slow to heal. I'll try and relax and chill out a bit. I think at least taking the pills I can be more relaxed and enjoy my food a bit more. When it was burning my throat all I could focus on was my reflux and how miserable I felt. It's still burning slightly but much better than a few days ago

sunshine05 Fri 18-Nov-16 14:06:07

oh and I'm taking a shot of apple cider vinegar and a shot of Aloe Vera a day too....maybe they'll help and if they don't I'm sure there's no harm in it!

sunshine05 Fri 18-Nov-16 14:08:26

oh and Brillig have you cut out caffeine? I'm a serious addict and if I could would have 3-4 coffees a day (from my Senseo coffee machine!) but am down to one when I wake then have maybe 1 or 2 teas later then on to Fennel tea. I get the lump feeling in my throat when I drink tea or coffee but I just can't cut it out. I have 3 kids, one of whom has kept me up lately with an awful cough at night and I need the caffeine!! hmm

DashboardLightParadise Fri 18-Nov-16 14:08:55

flowers ginger, resultant cancers and the likes of Barratts (sp?) terrify me. I hope you are keeping well now. I wholeheartedly agree with taking the tablets to treat the condition. As my gp said if you needed insulin to treat diabetes, you would take it.

I didn't take tablets during my pregnancies and I suffered badly the whole time. Once I wasn't pregnant they switched me to omeprazole, it took a year of waking up with a constant sore throat and a lump feeling that I was referred to a consulatnt about to realise it was silent reflux rather than the usual reflux I get with no tablets. Double dose of nexium for a month and back to my usual one of those a day I was on pre pregnancy and I was right as rain.

I would push for the endoscopy. I'm quite surprised they haven't tested you for helicobacter. It's normally the first thing they do when you mention it, not only me but friends. Explain you are losing weight because you don't to eat.

I'm 40, been taking tablets since I was 21 but suffered from bad heartburn since I was about 17. Although it's commonly associated with older ages, there really is no age limit on it. I know of one friend and and my young cousin who have hiatus hernias also.

sunshine05 Fri 18-Nov-16 14:17:51

So Dashboard were your symptoms burning in the chest or just the throat? This isn't like heartburn. I too have suffered with heartburn in the past- after the odd spicy meal and I'd take a gavisgon tablet. Had it really bad with all my pregnancies. But this is different - like you say more like burning in the throat only and the lump feeling and coughing/clearing my throat to talk

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