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Continuation of Acid Mouth story


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#1 fragiledancer2

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Posted 23 October 2011 - 01:48 PM

I wrote a few weeks ago about my ph test, acid mouth and no motility. I have been put on 120 mg of Dexilant which is a time released Prevacid. Some improvement, but still acid mouth, no classic heartburn. I am starting on Reglan and will switch to Motilium (where to buy?) if it works I am hoping my motility issue is part of the problem. So far though, no change. I have read here a few threads on motility and reflux, would appreciate any additions thoughts. My acid on ph test was 6.8 and only near the bottom of esophagus and only at night even though I taste the acid a few minutes after breakfast and throughout the rest of the day. The doctor said I may have esophogeal hypersensitivity. Any thoughts? Thanks.



#2 judyt

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Posted 23 October 2011 - 05:47 PM

Hi fragiledancer,
I take Motilium every day and would not be without it. Fortunately for me it is available in New Zealand on prescription from my general practitioner. I do know that some others on the Forum buy it from here but I don't know how.

Perhaps they will chime in and help you.

Warm hugs from downunder

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#3 Sheryl

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Posted 23 October 2011 - 06:30 PM

fragiledancer2, I used to take Reglan and developed some of the severe side effects. After two years of not taking it the effects have finally come to a halt. I wasn't sure they would ever really end. I will be starting Domperidone (Motilium) in a week or so. It is coming from the U K to Canada then to the U S to where I live. You can get it in a few countries some places require a prescription others do not. I spent two days tracking down a company that would mail it to me here in the U S. Everyone else wanted me to pick it up in Canada, which is a few hours away for me. I will see how this new script works for me as I have tried just about everything else. The bottles come in one hundred at a time. You can get six months at a time also instead of the regular 3 months. Of course I am paying cash and it isn't covered under medical since it isn't FDA approved in the U S. Message me if you want the company I am going through with telephone numbers.
Strength and Warmth,
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#4 Shelley Ensz

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Posted 24 October 2011 - 12:02 PM

Hi Fragiledancer,

I'm sorry you are having trouble getting heartburn symptoms under control and send my best wishes to you.

Here is an article on Esophageal Hypersensitivity, which you might find useful. Is it "only" the taste of acid in your mouth that concerns you now, meaning, do the rest of your tests show that your heartburn is mostly under control? The reason I ask is because I have been on some medications that cause an acid-like taste in my mouth, even a metallic-type taste. And during an inner-ear surgery once they accidentally cut the nerve to my taste buds, which caused absent and distorted taste for a very long time. I've also had odd and acid-like taste caused by gum infections. So you might want to explore the idea that since actual heartburn isn't severe enough to account for the taste, that it might be caused by other things -- such as hypersensitivity, or medications, or even infection. Especially consider any medications or supplements or food or drink that you might be taking habitually with breakfast. Some drinks, especially flavored coffees, sometimes leave a residual taste in my mouth that doesn't go away for a very long time and could easily be confused with reflux (if I didn't already know that I have it under good control.)

Another clue would be whether or not you actually feel the reflux refluxing. That is, when I have reflux that comes up all the way into my mouth, I can clearly feel it and the burn, all the way up from the stomach and it brings up fluid that I have to swallow back down. This can particularly happen when I bend over from the waist (rather than squat, for instance.) So it could be the silliest thing, like bending over from the waist to put away the breakfast cereal on the bottom shelf each morning -- something that you would not do in the normal course of an esophageal test -- that could account for the difference.

I may be wrong (I very often am, in fact, probably because I have no medical training at all) but I think the motility would be a separate issue, as in, it's what is occurring at the level of your esophagus and below, if your heartburn tests don't account for the acid in your mouth. So look to treating that properly, but don't have it treated only in hopes of getting rid of the acid taste, if the tests show that is likely not the root cause of it. If I made any sense at all in that sentence, it's a near miracle <sigh>.

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#5 fragiledancer2

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Posted 24 October 2011 - 08:30 PM

Thanks all-the ph catheter recorded mild acid at 6.8 in the lower part of my esopagus only, and only at night, not during the day which is when I feel most of the acid mouth.

On 2 prevacids or Dexilants I feel the heartburn in my chest. With 4 I feel it only in my mouth-weird! The Doctor said the tissue in my esophagus has been somewhat stripped and so I am tasting an "acid" thru nerve endings but it is controlled.

He also thought I might be confused with bile. I am worried that I am aspirating into my lungs though.

Have been on Reglan now for 4 days with no improvement-5 mg. Will go to 10 and then switch to Motilium if it helps. Thanks again!

#6 judyt

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Posted 25 October 2011 - 01:37 AM

Hello fragiledancer2

You asked how to send a private message to Sheryl.

Go to the post where she was offering to help you, double click on her Avatar and a window will pop up with Sheryl's information. Click on 'send me a message' and you will get a page to write in.

Best of luck and warm hugs
JudyT

#7 erika

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Posted 26 October 2011 - 08:42 AM

fragiledancer2,
Your problems remind me on my acid reflux problems I had few years ago caused by food sensitivity. For many years I had to take the highest dose of Controloc to decrease acid in mouth and a lot of Xanax to relax bronchospasms. When I stopped eating bread with yeast my acidity has stopped in less than a week. No medicines for that any more. No acidity, no bronchospasms.
Hope you will soon find the cause of your acidity. Keep going.
Erika

#8 fragiledancer2

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Posted 02 November 2011 - 08:47 AM

This follows up on my previous posts. I was put on Reglan 5mg 3 times daily until I could get the Motilium. After one week I developed a terrible physical restlessness and so went off on Monday. I am still feeling it! I read that although Motilium has fewer neuro side effects the difference statistically for Akathisia between the 2 drugs is minimal. Now, I am reluctant to take the Motilium. Of course I will talk with my doctor. He also wants me to try Zelnorm which also stimulates things. Any experience on when this will go away?- I was only on Reglan for 10 days, and these effects on Motilium. Thanks

#9 Joelf

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Posted 02 November 2011 - 11:33 AM

Hi Fragiledancer,

Sorry to hear that you didn't get on very well with Motilium and suffered with Akathisia whilst you were taking it. Hopefully our other members who have experience of that particular medication will be along to give you some helpful advice.

Zelnorm was withdrawn from the US market on 30th March 2007. I've included a link for you to a thread about the drug when it was first withdrawn.

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#10 judyt

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Posted 02 November 2011 - 02:32 PM

Hi Fragiledancer,

I am sorry to hear that you are having reactions to the meds prescribed for your acid mouth problems.

In my case I have not been aware of any unwanted effects - so far anyway. I have been on Motilium for a number of years. At first I was on 10mg 2 or 3 times daily to settle gastritis and it had the added bonus of preventing unexplained and sudden vomiting. When the gastritis settled I went on to a maintenance dose of 10mg in the morning. The one time I went off it, because I ran out, I was vomiting again after about 5 days.

I have been back on my once a day maintenance dose for the past 2 years until this week. I have been troubled by gastritis for a few months and my general practitioner has put me back on 3x daily until it settles again. I will be watching carefully now to see if I notice anything different. The plan is for me to take 3 daily until the pain settles then back to 2 then 1 over a few weeks.

Maybe I am just a lucky one or maybe I am just too unaware to notice bad effects. I will keep you posted about that.

Best wishes to you and hope you find a solution.

JudyT