Working to get off PPI

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Hopeoutthere?
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Date Joined Jul 2014
Total Posts : 57
   Posted 8/3/2014 6:59 AM (GMT -6)   
I am working to get off PPI' s which I had been on for a year. I went off cold turkey as I was having bad side effects . I got terrible nausea 2 days after stopping. I am working with a naturopath and taking DGL, aloe Vera, ginger tea and Zantac . The nausea is overwhelming in the morning when I wake up. By 3:00 in the afternoon the nausea seems to get better. Has anyone gone through this. How long does the nausea last? It 's brutal! Thanks for sharing. MGM
MGM

James_a
Regular Member


Date Joined Jan 2014
Total Posts : 97
   Posted 8/3/2014 11:11 AM (GMT -6)   
what was the reason you took the ppi in the first place?

I had to stop ppi while still having gastritis 8 months with them, they were causing my gastritis through the acid rebound every time i tried to stop them, i did get nausea but my nausea was from the gastritis.

I know many gate very bad acid rebound, which causes acid reflux and is painful and that could cause be the cause of your nausea. My gastritis flared back up badly this time and i have been off them now for just over 3 weeks, the rebound lasted two weeks and it was painful. But PPI were causing me so many bad and serious side effects and also played havoc with my gall bladder, making it very lazy and painful. The doctors never warned me if anything, on the contrary they told me no long term problem, they were not very bright.

trying to cure gastritis and now gallbladder problems caused by these ppi is hard without medication but i always prefer thing thru old fashioned way.

good luck and persist with it, you should see improvement in couple of weeks.

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/3/2014 11:40 AM (GMT -6)   
I took the PPI for gastritis to begin with and it helped, but then after 10 months I began to get diarrhea and other side effects from PPI so that is why I went off them cold turkey.
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/3/2014 1:31 PM (GMT -6)   
Thank you, I sure hope so cause this nausea is miserable and I cN barely eat Anything. My gastro Dr. Insists that PPI's don 't cause nausea and going off them does not cause rebound . It 's incredible , I can't be the first person to come to her with these symptoms. I hate that she tells me I am wrong and don't feel sick. Like I want to feel incapacitated .
MGM

Linda Sue
Regular Member


Date Joined Mar 2014
Total Posts : 459
   Posted 8/3/2014 1:57 PM (GMT -6)   
Hi Hopeoutthere ... I've had terrible nausea ever since I started using PPI's several years ago. Your gastro doctor is WRONG! I'm weaning off Nexium and was taking 40mg twice daily. I had nausea, short of breath, bleeding rashes on my arms, chest pain and just felt sick all the time.

Over the past month I've weaned down to one and have been on Zantac 150mg twice daily now for 3 days. Acid rebound is terrible and I still feel like crap but I know it is going to take weeks for my body to re-balance the amount of stomach acid it needs for proper digestion. I'm hoping I can stay off PPI's, but I will be finding a NEW gasto doctor because my current one has NO ANSWERS ... just like your doctor.

I got my weaning instructions from a pharmacist (they know much more about medications) because my gastro doctor told me to wean off for 2 weeks. That's not long enough at all. I really feel for you and the rest of us suffering but those PPI's were causing me so many other problems. The rashes have already cleared up, so that's ONE positive so far.

I have a long way to go but then I don't think I can feel any worse so I'm giving this a try. I also use Pepcid AC chewables and Gaviscon. I just don't know what else to do.

James_a
Regular Member


Date Joined Jan 2014
Total Posts : 97
   Posted 8/3/2014 2:01 PM (GMT -6)   
why was on ppi for 1 year, how long did it take for your gastritis to heal?

do you have pain in the stomach right now?

did you experience any burning type sensation in the stomach?

You can try Zantac or other H2 antagonist, they are not as harsh as ppi but easier to step off but if your having diarrhoea you could have bacterial overgrowth in GI tract which is consequence of long term ppi or even fungal infection. I would seriously change your doctor or press him/her for stool sample test to verify bacterial overgrowth.

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/3/2014 2:23 PM (GMT -6)   
Burning sensation on my mouth from acid I think.
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/3/2014 2:35 PM (GMT -6)   
Thanks for all the posts. It helps me feel I am not going crazy. I have felt so sick since going off Nexium and this forum is the only place where my feelings are validated. We have to help each other through this thing. MGM
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/3/2014 5:22 PM (GMT -6)   
I get so depressed when going to bed. I know that I will wake in the night feeling really sick and then the morning is just terrible. I awaken so nauseated I can barely get myself out of bed. And nothing really helps it. How long will this go on? Any thoughts ? MGM
MGM

James_a
Regular Member


Date Joined Jan 2014
Total Posts : 97
   Posted 8/3/2014 5:32 PM (GMT -6)   
Hi

Indeed we have to help each other as much as possible, but its also good to be in touch with your doctors too. Unfortunately they are only way to get tests done for better and more accurate diagnosis.

Have you had a endoscopy done? The issue is that 10 months is rather long time to take PPI for gastritis, its strange to be honest unless there is cause for this chronic gastritis. Have you been tested for H pylori bacteria infection? if not I would seriously do this as this can also cause not only gastritis but also nausea.

There are many reasons for nausea but trying to eliminate most unprovable causes can be quite difficult, its quite possible you still have gastritis that is causing the nausea or it could be just the GERD type rebound acid from stepping off PPI rather abruptly that is causing the gastritis. You could also have possible bacterial overgrowth of the GI tract or other possible explanations, even things like visceral hypersensitivity is another possible causes.

You must eliminate then 1 by 1, i would wait out for 2 weeks at least from the day you come of PPI before worrying about someting else, if you are really concerned then I would discuss it with your doctors, he can presicbe you medication that will terminate the nausea if its difficult to heal with.

Have you had a endoscopy at all? You must just bear it unfortunately as it will take 2-4 weeks for your body to adjust being of PPI and if you wanted to do stool or breath test for H-pylori you must be off PPI for at least 14 days and off H2 blockers for at least 5-7 days.

I would make appointment and discuss any issues you are having with you doctors or change him for another that might listen to you. Acid rebound is REAL and PPI cause sideffects that are only very vaugely listed on the manufactures list of side effects and doctors just don't know how to look for them and there are even side effects not listed there as was in my case.

I hope you find a solution soon, i know how horrible nausea can be.

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/3/2014 5:47 PM (GMT -6)   
Thank you for listening and your suggestions!
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/4/2014 7:36 AM (GMT -6)   
James, I was given Nexium a year ago after my going to my dr. With terrible nausea which he thought was acid reflux. No testing was done at that time, just "take the purple pill" I got an endoscopy, colonoscopy, ultra-sound , abdomen cat scan, all looking normal. My blood work looks normal. The nausea began 2 days after I quit Nexium cold turkey. My gastro dr. Wrote that I had GERD on my diagnosis , I should get the results of the gastric scan I had last week today. I am feeling pretty desperate as I really need to get back to work and need to feel better.
MGM

James_a
Regular Member


Date Joined Jan 2014
Total Posts : 97
   Posted 8/4/2014 8:00 AM (GMT -6)   
hi

you need an anticholinergic to treat the nausea if its causing you sever problems. Have you had a PH and manomentry study done? also gastric emptying study to asses gastroparesis because that could also cause varying problems including nausea.

You can also try domperidon to empty the stomach faster, talk with your doctor.

hope you feel better.

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/4/2014 2:03 PM (GMT -6)   
I had the gastric emptying test which came back negative. Now I have to schedule the Ph esophagus test. Just wish we could get this cured.
MGM

ericapeace2000
Veteran Member


Date Joined Mar 2012
Total Posts : 1110
   Posted 8/4/2014 5:41 PM (GMT -6)   
I am glad I got off the PPI. I still am not perfect but I feel better after weening off. I take pepcid ac and gaviscon now
GERD Moderator; Diagnosed GERD, possible IBS; Gluten free since 2012; low lactose since 2012

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/4/2014 5:58 PM (GMT -6)   
Anyone had the Ph test where u have to have the tube in for 24 hours . I'm nervous about it.MGM
MGM

Linda Sue
Regular Member


Date Joined Mar 2014
Total Posts : 459
   Posted 8/5/2014 12:33 PM (GMT -6)   
Hopeoutthere, a year ago, I had the Bravo pH Monitoring system. It is a miniature Ph capsule approx. the size of a gelcap that is attached to your esophagus. It is inserted with the endoscope procedure and I was sedated.

Throughout the test period, the Bravo pH capsule measures the pH in the isophagus and transmits this information to a small receiver is worn on your belt or waistband. The test period lasts 48 hours or more, depending on what your doctor requests. The capsule dissolves and is eliminated by the body within a week or so. Get details about this test from your doctor.

I feel this test, for me anyway, was a waste of time & money as it monitored a 'normal' level of acid (I was on Nexium at the time). The reason I went for it was that I was SICK with nausea, chest pain, fatigue and just plain miserable. My doctor just told me to increase the Nexium to TWO per day! This did NOTHING to help.

I've been off Nexium now for 5 days and the 'acid rebound' is horrendous ... the chest pain is almost unbearable and I just don't know how much longer I can go on like this. I am sick every minute of every day.... I will try to hold out to see how long it takes to get Nexium out of my system. The Zantac doesn't seem to be helping at all so far.

I'm sorry I can't offer something positive, but I'm now looking for a NEW gastro doctor!

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/5/2014 12:51 PM (GMT -6)   
Thank you so much for writing. I will need to have the tube down the nose cause my Dr. Doesn't offer the Bravo method. It sounds stupid for you to have had the test when you were still taking Nexium. So that is what your test is going to measure. My Dr. Said I had to be off Nexium for a week before the test. I've been off for 3 weeks and it has really been hell. I am so nauseated all the time it's horrible. I really feel for you. I did go to see a naturopath dr. Who put me on some supplements. At least I don't feel they are hurting me. I surely hope you get some relief soon. I keep praying that I will detox from Nexium and will feel myself again .
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/5/2014 12:55 PM (GMT -6)   
It is so exhausting to feel sick all the time and of course I feel I did it to myself by taking the Nexium to start with, all I can offer is that i 'm in this pit with you. Write whenever you want. I can try to be supportive.!MGM
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/5/2014 1:05 PM (GMT -6)   
Linda Sue, so, a question . I have been off Nexium for 3 weeks now. I have noticed that my nausea is the worst in the morning when I can barely drag myself out of bed it is so bad. In the evening from about 7:00 to 10:00 it seems to not be as bad. Do you have any time of the day you feel less sick?MGM
MGM

Linda Sue
Regular Member


Date Joined Mar 2014
Total Posts : 459
   Posted 8/5/2014 4:14 PM (GMT -6)   
Hopeoutthere, it's so discouraging to learn that you still feel so bad after 3 weeks off Nexium. I'm only in day 5 and there is NO WAY I can feel like this for 3 more weeks. Are you taking acid-controllers regularly?

I feel the worst just before I get out of bed (my bed is elevated) ... and I just haven't been able to give up my morning coffee and I know it's acidic. It doesn't really matter what I eat or drink, it will all HURT. Today has been my worst day yet.

I feel somewhat better if I can get my mind off this awful condition, but that's hard to do as you know.

I'll be making an appointment with a new gastro doctor and will probably have to wait several weeks for him to see me, IF he's even taking new patients.

Hang in there; you're in good company and don't stop trying to find solutions.

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/5/2014 4:38 PM (GMT -6)   
I know , I can hardly eat anything at all. I have to force myself to eat a little a few times a day. I usually take Zantac twice a day but have been off that for the ph mamometry test tomorrow . I really feel like it will be another tortuous test that won't show anything. But I have to keep trying to find an answer. I was never sickly like this before I started with the Nexium. I have a new naturopath Dr. Who has me trying all kinds of natural and homeopathic things. I'll let u know if anything works. I have to get myself better. And it would surely help if I could find a Dr. I feel is helpful. Keep the faith!
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/5/2014 4:44 PM (GMT -6)   
Can I ask how your bed is elevated? I sleep sitting up with 4 pillows. It stinks.
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 8/7/2014 8:43 AM (GMT -6)   
Linda Sue, how r you feeling today? I had that hideous mamotry and PH testing yesterday . I won't hear results for a week, meanwhile I must concentrate on trying to keep my strength up by eating though I still am nauseated. I wonder how much of this is caused by getting off Nexium ?
MGM

Linda Sue
Regular Member


Date Joined Mar 2014
Total Posts : 459
   Posted 8/7/2014 2:01 PM (GMT -6)   
Hopeoutthere, I purchased an adjustable bed a year ago, as pillows and blocks don't work as I kept sliding down during the night, but what I have now doesn't improve my sleep, although I'd probably be worse off without it.

I still feel like crap! I had to go back on Nexium after being off for 5 days I was so miserable. I felt sick on it, and didn't think I could feel any worse but I was wrong.

I have an appt. with a new Gastroenterologist but couldn't get in until Sept. 22nd, so I now have a call in to my doctor to see if she will prescribe a pain reliever that will help me survive, get a good nights' sleep and function until I can see this new doctor. I must force myself to eat and my nausea is awful. Getting off the Nexium, I believe takes a VERY LONG TIME; Longer than I allowed but I have enough to take until I see new doctor who might have some answers and some relief (I can only hope).

I will keep you posted. You are in good company and I'm so sorry you are sick like me. I don't think I would 'wish this on my worst enemy'!
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