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PPI withdrawal symptoms ....


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Old 04-05-2017, 08:42 AM   #1
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PPI withdrawal symptoms ....

Hey all,

I'm having a lot of health issues right now that seemed to start with a stomach virus and me coming off my 40mg daily of protonix / pantoprazole. Had bad virus and came off PPI in January for a week, then went back on every other day (since I thought maybe I could reduce) than went back to every day. I was sick again the end of Feb and came off my ppi for a week. Went back on it here and there, started getting worse again came off. I haven't had it now in a week.

I had no idea about possible withdrawal or rebound or any of that. My doctor insinuated I only needed this drug "as needed" and I didn't realize a reflux med could cause problems to come off it. I was on it a year and I am starting to think all my health issues in the last month are related to the on-and-off way I was taking it since January and now full-on withdrawal.

I'm dizzy off and on - slightly lightheaded and like a low level head buzz and ringing in ears. I have what sometimes feels like sinus pressure. I feel nauseous off an on. I'm shaky off and on - like internal trembling, especially first thing in the morning (along with soar throat). I feel tense and anxious with absolutely no history of anxiety or panic attacks.... though being sick for a month and not knowing what's wrong doesn't help. I'm not sleeping well, have odd dreams and am lucky to get a solid 4 hours sleep. So fatigued. Lots of gas and stomach gurgling, ton of belching after I eat. Loose stools sometimes diarrhea almost every morning. Lump in throat. No great chest pain but I didn't have a lot of heartburn before the PPI - I had gone on it for shortness if breath, which has returned but hasn't been as bad.

My blood work has all been normal. I've had three rounds. There was a very very slight indication of maybe my b12 being a tiny bit low on one of the tests, but none of the docs were concerned. I've upped my vitamins. Chest X-ray was normal. ER found nothing and my doctor (been there 3 times) is perplexed. I'm going to gastro next week and ENT in two weeks. But the quality of my life has SUCKED - I've seriously been mostly bed-ridden for a month! It's the dizzy and non-reflux symptoms that are the most debilitating! Dizzy/fuzzy head and fatigue are interfering with everything.

Anyone else experience this kind of withdrawal?
I need to know I'm not alone....

Thanks...

Last edited by Administrator; 04-05-2017 at 03:32 PM.

 
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Old 04-05-2017, 12:08 PM   #2
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Re: PPI withdrawal symptoms....

Sorry I don't have any answers but this is my first day coming off 40mg

All the best!
K.

Last edited by Administrator; 04-05-2017 at 03:35 PM.

 
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Old 04-05-2017, 01:08 PM   #3
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Re: PPI withdrawal symptoms....

I've gone off PPI's several times and just experienced a lot of acid rebound.

Never had any dizzy feelings.

Best of luck to you.

 
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Old 04-05-2017, 01:47 PM   #4
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Re: PPI withdrawal symptoms....

I did have my gallbladder out in 2014 and other than a short complication immediately following, have been ok since. The shortness of breath came on last year during a very stressful time and that's when my primary doc prescribed the protonix/pantoprazole. I seemed okay on it until January, when my first stomach virus kicked my butt....

I did get some Pepcid (regular strength) and took it today, but it did not help any of my symptoms at all. Maybe it slightly helped the stomach churning and gas, but not much.

Last edited by Administrator; 04-05-2017 at 03:30 PM.

 
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Old 04-06-2017, 03:13 PM   #5
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Re: PPI withdrawal symptoms ....

Funny you mention, because I also had sinus issues when I stopped PPI's. You need to have a "toolkit" of meds. Pepcid, zantac, Gaviscon (liquid) and something for the nausea. Find a combination that works for you, and only take when needed. Your doctor is severely misinformed if he said you wouldn't get rebound symptoms.

 
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Old 04-06-2017, 03:35 PM   #6
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Re: PPI withdrawal symptoms ....

Thanks Leo. Did you have any light-headedness too?

Unfortunately, I was back in ER this morning. They did a CAT scan on my head (I guess because of the dizziness)... it was normal. They repeated all blood work... normal except very slightly elevated MCH (which could mean low b12). It was very slight - the doc really says it's normal.
They wouldn't test anything else and sent me home. I was in tears over frustration, which is VERY out of character for me.

Only elevated blood test has been SED rate earlier this week at doctor. Hospital doesn't get that result immediately.

Managed to convince gastro doc to squeeze me in tomorrow thankfully, so hopefully we can get some answers. Today I'm trying to eat very light. Taking a few almonds after food which actually seems to help settle stomach. I noticed I feel better after crying, which might be some anxiety release but also, it's clearing my sinuses and that tight head pressure feeling. If some of this is acid rebound it may well be effecting my sinuses which could also cause the dizziness!

Other than the obvious (big scary health issue), I'm fearful the doc will just want me back on PPI med...

 
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Old 04-19-2017, 11:33 AM   #7
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Re: PPI withdrawal symptoms ....

I'll try to keep my update quick because I'm not sure if anyone is following along...

After the last ER visit (on the 6th), I did manage to get in on a cancellation with Gastroenterologist. He testing me for H. Pylori and did some additional blood work. It was all negative. He also ran an abdominal/pelvic CATSCAN and that was all normal except for a small umbilical hernia. I got all the results a couple of days ago.

That same day (the 6th), I started drinking small amounts of almond milk and eating 2-4 almonds after each meal to see if it would help with any of my symptoms. It was amazing. Even my husband commented that I was a LOT less gassy. I've continued now to do that and it overall seems to help. After any meal I just eat a few almonds (always 4 or less). I drink about 2-3 ounces of almond milk first thing in the morning when my sore/dry throat and other symptoms are their worst. I have a few sips before bed.

Yesterday I finally saw the ENT. He was amazing! I wish he could be my regular doctor. I had a hearing test, they scoped my sinuses and throat and he confirmed I have LPR. He said almond milk is great and keep doing that if it helps. He also thinks the dizziness and fatigue could absolutely be related to gastritis (possibly cause by my stomach virus back in January and February) and PPI withdrawal. He told me to go back to the Gastroenterologist and suggested an endoscopy. I actually already have the followup appointment scheduled and suspected the next step might be the endoscopy.

He also was yet another doctor to confirm that it's good I stopped the PPI. I'm shocked at all the doctors I've seen and how many of them now think PPIs for long-term use are a last resort... I didn't expect this since I'm used to them rolling their eyes at me when it comes to my hesitation to be on medications at all (I'm one of those people who is allergic to everything). It's nice to feel validated.

BTW, my ENT also mentioned that since I'm 47 I should go see my gynecologist. He said even hormones imbalances can effect reflux and dizziness.

Anyway, so far it seems that the dizziness and fatigue is getting a little better each day. I'm finally starting to feel like things can get back to normal again. Feeling out of breath and the lump in my throats is yucky, but at least I can get out of bed with those.... the dizziness and fatigue was really knocking me out! I'm glad I'm starting to feel stronger again. Hopefully the worst of it is behind me.

Thanks for listening.

Last edited by TumBunny; 04-19-2017 at 11:40 AM.

 
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Old 04-27-2017, 09:02 AM   #8
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Re: PPI withdrawal symptoms ....

Hi TumBunny, I am definitely following along and thank you for taking the time to explain your situation and updates. I am a few days off of the horrid omeprazole, and experiencing similar side effects.

Dizziness is the hardest to handle for me now, I feel like I am mildly stoned, or disconnected from myself. I am drinking lots of water and hope this feeling goes away very soon. Please keep up informed of your progress, thanks!!

Mike



Quote:
Originally Posted by TumBunny View Post
I'll try to keep my update quick because I'm not sure if anyone is following along...

After the last ER visit (on the 6th), I did manage to get in on a cancellation with Gastroenterologist. He testing me for H. Pylori and did some additional blood work. It was all negative. He also ran an abdominal/pelvic CATSCAN and that was all normal except for a small umbilical hernia. I got all the results a couple of days ago.

That same day (the 6th), I started drinking small amounts of almond milk and eating 2-4 almonds after each meal to see if it would help with any of my symptoms. It was amazing. Even my husband commented that I was a LOT less gassy. I've continued now to do that and it overall seems to help. After any meal I just eat a few almonds (always 4 or less). I drink about 2-3 ounces of almond milk first thing in the morning when my sore/dry throat and other symptoms are their worst. I have a few sips before bed.

Yesterday I finally saw the ENT. He was amazing! I wish he could be my regular doctor. I had a hearing test, they scoped my sinuses and throat and he confirmed I have LPR. He said almond milk is great and keep doing that if it helps. He also thinks the dizziness and fatigue could absolutely be related to gastritis (possibly cause by my stomach virus back in January and February) and PPI withdrawal. He told me to go back to the Gastroenterologist and suggested an endoscopy. I actually already have the followup appointment scheduled and suspected the next step might be the endoscopy.

He also was yet another doctor to confirm that it's good I stopped the PPI. I'm shocked at all the doctors I've seen and how many of them now think PPIs for long-term use are a last resort... I didn't expect this since I'm used to them rolling their eyes at me when it comes to my hesitation to be on medications at all (I'm one of those people who is allergic to everything). It's nice to feel validated.

BTW, my ENT also mentioned that since I'm 47 I should go see my gynecologist. He said even hormones imbalances can effect reflux and dizziness.

Anyway, so far it seems that the dizziness and fatigue is getting a little better each day. I'm finally starting to feel like things can get back to normal again. Feeling out of breath and the lump in my throats is yucky, but at least I can get out of bed with those.... the dizziness and fatigue was really knocking me out! I'm glad I'm starting to feel stronger again. Hopefully the worst of it is behind me.

Thanks for listening.

 
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Old 04-27-2017, 08:40 PM   #9
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Re: PPI withdrawal symptoms ....

Hi Mike,

Sorry to hear you're suffering with similar side effects. It's crazy isn't it? Hard to believe a reflux med can reek such havoc on other systems and cause "withdrawal". Had I known I would have attempted to avoid it completely. Hindsight is always 20/20.

I went to the follow-up with my Gastroenterologist just yesterday. He was glad to see that I'm feeling better. I told him the ENT diagnosed me with LPR and he wasn't surprised. It seems they are on the same page at this point that I came down with some kind of gastritis as a result of the bad stomach flu, it all just made my reflux worse and combined with the PPI withdrawal may just have been "the perfect storm".

Each day I do get stronger and better. I'm still drinking almond milk first thing in the morning and before I go to sleep, and I'm still eating a few almonds after meals. It does make a difference and the almond milks helps with the LPR symptoms. It's incredibly soothing especially when I first wake up. The Gastroenterologist said that we'll watch closely over the next eight weeks and see what happens, but he doesn't want to rush and put me on any new medication. I'm happy for that for now.

The last doctor to see will be the gynecologist, as I've heard hormones and menopause (I'm 47) can play a role in making reflux worse as well. I'm overdue for an exam anyway, so might as well get it done. I've been poked and prodded in every other way... LOL
That appointment is next week.

It's good to finally be feeling like life is getting back to normal. Not 100% yet, but getting there. I even started walking again this week. One mile per day for now... will try to increase slowly.

Thanks all... will update again after next doctor...

 
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Old 05-17-2017, 06:59 AM   #10
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Re: PPI withdrawal symptoms....

Quote:
Originally Posted by movielover40 View Post
I've gone off PPI's several times and just experienced a lot of acid rebound.

Never had any dizzy feelings.

Best of luck to you.
can you tell me how long the rebound usually lasts for I have been on 40 mg of protonix since Feb. 1st for mild gastritis and I am not sure when to try t come off, they say I need it to heal but am really afraid to come off because of all the horror story's.

 
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Old 06-19-2017, 02:28 AM   #11
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Re: PPI withdrawal symptoms ....

Interesting read
I haven't been on here for a while as I began to feel helpless with my acid reflux situation
After thinking about it a lot I would advise people to only go on PPI'S as a last resort...ie to heal severe gastritis or as protection against Barratts Oesophagus. I would advise such people to ensure adaquate intake of calcium and vitamins/minerals as low acid production hinders absorption from food

I have been on and off Omeprazole for a few years now and each time I come off I end up going back on due to rebound
I also think some Doctors would only believe rebound exsists if they suffered it themselves

My efforts to come off fail wether I do it very slowly (opening a capsule and taking progressively less and less of the little balls) or cold turkey
Sometimes I come off and am fine for a month then it starts up again. Sometimes I have problems as soon as I stop taking them

At the moment I am on a low dose of 10mg. Taken at night with Gaviscon Advance as my reflux happens most in bed despite having the head of the bed raised and avoiding all the food/drink triggers
Sometimes in the night I inhale the acid into my lungs and have a sort of scary asthma attack

I did have dizziness at one point. I was told that I must stop taking the PPI for 10 days prior to my second endoscopy...that resulted in rebound and the endoscopy showed severe inflammation of the stomach and duodenum (Gastritis)

Finally, I believe my reflux is part acid part bile as my first endoscopy showed my stomach was full of bile (I have no gallbladder, after it was removed)

 
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Old 06-19-2017, 08:02 AM   #12
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Re: PPI withdrawal symptoms ....

Rainbowsrock,
You mentioned "scary asthma attack"...is this symptom like asthma (difficulty breathing out) or like LPR ( difficulty breathing in). ? I have the latter kind more in mornings which could be due to LPR, which I am still trying to figure out if I have or not. Is there any easy way to know if I have LPR?
Might sound naive, but I was thinking what if I drank stomach full of water, and stood inverted, legs supported on walls. If the LES and UES are not closing , would I not feel water come up to my throat?

thanks for reading
S

Last edited by dsan; 06-19-2017 at 08:02 AM.

 
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Old 06-19-2017, 04:07 PM   #13
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Re: PPI withdrawal symptoms ....

Hi
Night asthma attacks occur when I am asleep so at the time if feels to me like the acid/bile has come up and I have inhaled it into the wrong'pipe' so to speak (the one leading to the lungs instead of the stomach) I've read various muscles go into survival mode....clamping shut to stop any other foreign matter entering the windpipe. There then follows a period of gasping for air then furious coughing until the body feels the danger is over and lets you breathe

I'v also had what seems to me to be near death experiences when food has entered my windpipe and the muscles clench allowing no air in or out. I presume this is because of damage caused by the reflux
I can choke on my own saliva and sometimes food only has to touch my throat to start a coughing fit off. I have had 2 endoscopies so am at a loss to know why these things happen

I don't think you're naiive to contemplate the inverted position to test the LES...the condition makes us desperate

The LES Sphincter can be made lax by some medication, being overweight and some foods

I've never read up on LPR but suspect I have that as well as reflux

Am editing to add sleeping on your left side is beneficial

Last edited by rainbowsrock; 06-19-2017 at 04:11 PM.

 
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