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Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/19/2013 2:19 AM (GMT -6)   
Can anyone help please?

I've had heartburn and burning throat/mouth for almost 5 months. It's been almost constant I will get the odd day here and there where I don't get any symptoms but its quite rare. Last night I got a very tight pain in my chest which lasted on and off for about 30 mins.

I've had 24 hour ph test and Manometry test. I have a high demeester score (33.9). I don't know if I have a hernia nothing was found on the endoscopy.

I eat a very plain bland diet. Follow all the rules for acid reflux and yet my symptoms persist. I've been taking omeprazole but it doesn't do anything.

I realise that I must be leaking a lot of acid or vapours with a demeester score that high but the Manometry test on the day said that my sphincter was within the correct limits. Although during the test I didn't have any symptoms. I do wonder if I have a sliding hernia.

Is there anything that I could be taking that is stronger and would help to ease my symptoms? The last 5 months have been horrendous.

Maria

1039smooth
Veteran Member


Date Joined Sep 2013
Total Posts : 1982
   Posted 9/19/2013 4:38 AM (GMT -6)   
My gastroenterologist switched me from omeprazole to Dexilant. To this day, I'm not really sure how much it helped me, but everyone is different. I think it's worth mentioning to your doctor as I believe it's the strongest thing they have.

You said you follow all the rules for acid reflux. Have you tried waiting 2-3 hours after you eat before bending, reclining, or lying down? If not, give that a try and see if you still feel bad.

I had a hiatal hernia (had to repair with Nissen; the jury is still out on how that's working).

Post Edited (1039smooth) : 9/19/2013 4:43:10 AM (GMT-6)


GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 9/19/2013 5:30 AM (GMT -6)   
Have you tried keeping a food diary to what triggers your reflux? Try also an alkaline diet and I can recommend gavison Advance. I would ask your consultant for a barium swallow.
Hypothyroidism, Glaucoma, Dry Eye Syndrome, Positional Vertigo

"I am simply stunned...that is this age of technology not one company or individual has managed to make a valve that could be placed BELOW the LES to STOP reflux!"

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/19/2013 5:40 AM (GMT -6)   
Thanks for your replies.

I've just been given some different medication-Lansoprrazole, Ranitidine and Domperidone to take. I'll give those a try and see if it helps. GP said they should start to work within a few days. I'll be seeing him again on Saturday so I'll be able to let him know.

Maria

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 9/19/2013 9:48 AM (GMT -6)   
Hello Mcedge,
My symptoms started on the 8th May and I have tried Omeprazole (really bad headaches and other side effects). Then put on Lansoprazole and then finally Esomprazole (Nexium). Each one helped for about a week, and stopped working. As of two weeks ago I am not on any PPIs and just take Gaviscon Double Action tablets, which help a bit.

I am still waiting on a 24hr PH test, but was told that the waiting list is full up until the end of October! I was not offered any other test.

I saw the gastro consultant on the 6th September and he has advised my GP to prescribe Metroclopromide, which is similar to Domperidone. He said he only wants me on it for a month due the rare chance of irreversible neurological side effects. So this is really worrying and although I am desperate to get better, I really don't need another another health issue! I was reading up on Domperidone and it seems that it is somewhat milder than Metroclopromide ... so I may ask the doc about that.

I was wondering if you were offered a gastric emptying test?

I really hope things improve for you and I would love to know how you get on with the Domperidone particularly, so do please keep us informed of your progress.

I too am in the UK (London) :-)

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/19/2013 12:11 PM (GMT -6)   
Hi, Noelle3

Thanks for your reply. Like you my symptoms only started in April of this year on Good Friday to be precise. It all came out of the blue I'd never had heartburn or indigestion before in my life but now it's never ending. I rarely go a day without some symptoms.

I tried to control this with diet alone but found that impossible even though I eat a very bland diet.So decided to go down the drug route. I'm hoping to take them for a month to see if they make any difference. I really don't like the idea of all these drugs.

I see that you've got a 24hour ph test. Have they not been offered a Manometry test too ?

I didn't do a gastric emptying test as I don't think I have a problem with my stomach.

I hope your symptoms improve too.

Maria

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 9/19/2013 12:57 PM (GMT -6)   
Hi Maria,
Yes, I've been trying to control it with a very bland diet too .. but without success also.

No, they didn't offer me a Manometry test and I'm quite worried that any further tests I might need will take as long as the 24hr. PH test to come about. I suppose the various health authorities differ with regard to waiting lists. May I ask what part of the UK you are in?

All the best.

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/20/2013 2:20 AM (GMT -6)   
Hi, Noelle3

I live in Cambridgeshire.

When all this started I waited a few weeks to get an endoscopy and a ct scan - nothing was found so NHS consultant wrote and told me she would see me in December. I'd only ever seen her once in all of this. Got really annoyed cause I was having a really bad time with my symptoms so decided to go private to get the test done. I had never been offered these tests on the NHS.

Going private meant I saw a consultant quickly who recommended that I get the tests done. I was told I could have the tests done within a few days. After the tests I got the results back within 24 hours all very quick. I think if I'd waited for NHS I'd be dead by now!

If you need any details of where and who I saw for the tests then please don't hesitate to ask as I really do know what it's like when your in pain and not getting anywhere with the NHS and worst of all having to wait months for appointments.

Maria

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 9/20/2013 3:24 AM (GMT -6)   
Thank you so much Maria. Yes, I would very much appreciate details of where and who you saw for the tests and perhaps the cost involved.

I'm still finding my way around this forum and to the best of my knowledge there is no facility for personal messages. I haven't added my email address to my profile, but can if you would prefer to communicate about this privately.

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/20/2013 4:17 AM (GMT -6)   
Hi Noelle3

I haven't put my e-mail on my profile either but I will if you want it.

I got in touch with the reflux centre in London although it says London there office is actually Birmingham. I spoke to a Martyn Berret. They have consultants all over the country but as your in London you would use those.

I went to see my consultant in the Spire in Leicester as it's closer to get to by car. I saw a Mr Sutton. The cost for the consultation was £195. Mr Sutton is also the surgeon which is good.

I had the tests done in London at the Gut Clinic in Upper Wimpole Street. The cost for the 24 hour impedance test and the Manometry test was £1500.

I know this is a lot of money but I honestly couldn't wait for the NHS .

After lots of research into what I thought I'd got and and why I got it I then started looking into ways of curing it. I don't want to take medication forever and I can't possibly live on this restricted diet - I love food too much. I came to the conclusion I'd got acid reflux I then came across the linx procedure.

I decided to use the reflux centre as they do the linx procedure they did the first procedure of the linx in this country. I believe they have the best surgeons for the linx and they have done the most operations for it.

If there is anything else you need to know then just ask. Like you it new to me also but if I can help I will.

Maria

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/20/2013 4:42 AM (GMT -6)   
Noelle3

Sorry from your other threads I see that you've had an endoscopy and had confirmation of a hernia so for you the only way to cure it without medication is with an operation.

Maria

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 9/20/2013 8:30 AM (GMT -6)   
Thanks again Maria. Gosh! £1500 is steep! ... but I can well understand your frustration with waiting on the NHS. Sorry, but is the 'reflux centre' called that? It's just that I googled it and a lot of centres came up ... what is the exact name of the centre?

The Linx sounds a bit less scary doesn't it? But I believe the private cost is around £8,000! ... that would be beyond my present means I'm afraid.

The hernia is so small (1 cm) and they are saying that is not the cause of the reflux.

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/20/2013 9:00 AM (GMT -6)   
Hi Noelle3

It is the reflux centre telephone number is 0845 128 0053. There is also a reflux clinic but that's in Nottingham .

Did the doctors find your hernia before or after your symptoms started. If it was after then I believe that it could well be the hernia causing your reflux. I know of others with a small hernia that as caused their reflux. I can't see how the doctors can rule it out.

Don't forget that the linx is now being performed in NHS hospitals. There are two that I know about one is in Devon and the other in Surrey. Surely you could get referred if you wanted the Linx. I'm sure more and more NHS hospitals will start to offer this procedure as it's fairly cheap and a quick. They say that they do it now as day surgery.

Maria

Noelle3
Regular Member


Date Joined Sep 2013
Total Posts : 193
   Posted 9/20/2013 9:25 AM (GMT -6)   
They found it after Maria. That's interesting that you know of others with small hernias which caused their reflux. I've also read that they can underestimate the size of a hernia during endoscopy, then when they have opened the person up have found it to be larger.

I will definitely ask about the linx on the NHS and Surrey isn't far from London.

Thanks for the phone number!

I was wondering if you had started the Domperidone yet? ... if so how are you getting on with it.

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/20/2013 9:55 AM (GMT -6)   
Hi Noelle3

It is the reflux centre telephone number is 0845 128 0053. There is also a reflux clinic but that's in Nottingham .

Did the doctors find your hernia before or after your symptoms started. If it was after then I believe that it could well be the hernia causing your reflux. I know of others with a small hernia that as caused their reflux. I can't see how the doctors can rule it out.

Don't forget that the linx is now being performed in NHS hospitals. There are two that I know about one is in Devon and the other in Surrey. Surely you could get referred if you wanted the Linx. I'm sure more and more NHS hospitals will start to offer this procedure as it's fairly cheap and a quick. They say that they do it now as day surgery.

Maria

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/20/2013 10:27 AM (GMT -6)   
Noelle3

Sorry posted the above post twice I was in a hurry.

I haven't started the domperidone yet. I have had it previously but it didn't do anything for me I've been given it again with a different combination of drugs. When I took it previously I didn't have any side affects but then everyone is different.

I was hoping that I have a hernia as it would explain the sudden onset of this acid reflux but nothing was seen on the endoscopy. That doesn't mean that one wasn't there as they can be missed especially if they are small. At the time of my endoscopy I don't think that they were looking for a hernia.

I can't tell you which hospital in Surrey is doing the Linx though. I'm sure that in the long term it will become common practice within the NHS as it is quite a simple procedure and reversible if any problems arise. It will also save the NHS millions in the long term by not prescribing drugs.

I have been thinking that maybe you could contact the gut clinic in Upper Wimpole Street directly and ask for a price for those tests. It may be cheaper as I went through the reflux centre. If I were you I'd give them a ring and ask for a price.

Maria

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted 9/20/2013 10:33 AM (GMT -6)   
What does your diet look like? I know you said bland, but maybe food allergies could play a role
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough) ; Gluten free since 2012; low lactose since 2012

Mcedge
Regular Member


Date Joined Aug 2013
Total Posts : 292
   Posted 9/20/2013 11:01 AM (GMT -6)   
Ericapeace2000

I don't think that I have any allergies.
I believe I have acid reflux either due to a hernia although one wasn't found on the endoscopy or due to a sphincter that just goes weak when it wants to. I say this as I had a Manometry test and the sphincter didn't show up as being weak but my 24 hour ph test says I had a high demeester score (33.9) so acid or vapours are leaking out some how.

Maria
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