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PPI withdrawal symptoms....

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Posted 4/5/2017 1:48 PM (GMT 0)
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 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 - 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 read a blog post that listed my withdrawal experience almost to the letter, though it was withdrawal from Prilosec. I need to know I'm not alone....

What have you all experienced?

Thanks...

Post Edited (TummyBunny) : 4/5/2017 7:57:16 AM (GMT-6)

Posted 4/5/2017 3:54 PM (GMT 0)
I'm not a medical professional, but my experience with Protonix is that it needs to be taken daily and not "as-needed." Were you not taking it for acid reflux or heartburn, but rather for shortness of breath? When you were on it for a year, did it help? I was on Protonix for many years and never experienced withdrawal or rebound symptoms, but that's just me. I would consider going back to taking the Protonix daily, as you had in the past, and then ask your gastro doctor how to properly wean off of your dosage - or if he has any other suggestions.

Sharon
Posted 4/5/2017 8:52 PM (GMT 0)
It wasn't helping completely so that's why I decided to come off (again, not knowing about withdrawal or rebound). My doc had prescribed it like this: "seems like the shortness of breath might be from reflux so let's try Prilosec and see if that helps" .... which it did but it was causing me some side effects. I asked to be switched to protonix because I was on that for a couple weeks when I had my gallbladder out (2014), and other than a bit of insomnia and weird dreams, didn't have much else in terms of side effects.
Posted 4/5/2017 11:50 PM (GMT 0)
My mother and I both experienced acid rebound when trying to wean off this medication (PPIs)... even when trying to wean off it slowly.. It can make it difficult for some people to wean off the medication
Posted 4/6/2017 12:13 AM (GMT 0)
.... also should mention lump in throat feeling is usually globus sensation caused by silent reflux/ LPR. Globus sensation is one of the symptoms of silent reflux.

If you put the word "acid rebound" in search field (top middle of page) you will find other post on acid rebound

Post Edited (CAGU) : 4/5/2017 6:16:47 PM (GMT-6)

Posted 4/6/2017 8:29 PM (GMT 0)
Update: was back in ER this morning. For some reason they did a CAT scan on my head (I guess because one of my complaints is 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...
Posted 4/6/2017 11:32 PM (GMT 0)
PPIs, acid rebound, silent reflux is linked to many of the symptoms you have been describing including sinus issues.

Silent reflux/LPR .... "It is now being increasingly recognized and linked to other disorders including chronic fluid in the ears and sinus infections and nasal congestion" I've posted link below on this.

http://www.ctallergyandasthma.com/content/laryngopharyngeal-reflux-lpr


Low in vitamin B12 is also linked to PPIs. "Taking proton pump inhibitors (PPIs) to ease the symptoms of excess stomach acid for more than two years was linked to a 65 percent increase in the risk of vitamin B-12 deficiency". See link below:

http://www.webmd.com/heartburn-gerd/news/20131210/acid-reflux-drugs-tied-to-lower-levels-of-vitamin-b-12#1


Your not alone with PPIs causing anxiety. However, this did not happen to me, but there have been other people reporting this on other healthboards. see links below:

http://www.benzobuddies.org/forum/index.php?topic=144197.0

https://patient.info/forums/discuss/ppi-causing-anxiety-and-agitation--519536

Post Edited (CAGU) : 4/6/2017 5:46:28 PM (GMT-6)

Posted 4/7/2017 12:29 AM (GMT 0)
Thanks Cagu.

Like many around these parts I've been doing tons of internet research (which can be good and bad). Thanks for the additional info. The b12 wasn't new which is why I mentioned it. I did know about sinuses a little and suspected maybe it had something to do with my dizziness, but not about chronic fluid in the ears, which I have had literally for decades!
Posted 4/7/2017 9:29 PM (GMT 0)
Just another update...

Went to gastroenterologist today. He was great. Listened to my story and asked a ton of questions. I didn't feel he was dismissing me or rushing me.

He sent me for more blood work and an h. Pylori breath test. He wants another bunch of stool tests so I picked up the kit. He wants CT scans of pelvis and abdomin so I'm doing those tomorrow. He mentioned something about a "new fancy expensive antibiotic" that might be necessary but he has to get it directly since most insurance companies don't like to cover it. He gave me the name but I don't remember. Begins with a z?

Ill be going back to him in two weeks. He didn't tell me to take the PPI/protonix again... he understood why I'd want to be off it.

Next week is ENT.

My symptoms continue. I'm worse in the morning especially when I first wake up. And also if I eat something that seems to trigger a lot of gas. I noticed during the hp test that after drinking the super citrus stuff, 30 minutes later I felt awful.
Posted 4/10/2017 1:07 PM (GMT 0)
TummyBunny:

When was your last endoscopy?

Sharon
Posted 4/10/2017 4:28 PM (GMT 0)
Hi Sharon... it's a few years ago now. I just saw the Gastro doc on Friday though, so he may end up ordering one depending on how my CT looks and other things.

Another update:

I went for the CT Saturday. Overall, I've been feeling a little better but of course all that stuff I had to drink for the scan made my stomach quite wonky and unsettled.

Since Friday night I am overall less gassy and have less indigestion. I'm still a little dizzy and tired off and on and it seems to correlate with my stomach feeling off, but it's been less. I don't know if it's a coincidence or not, but Friday I started taking B12 vitamins and eating 2-4 almonds after each meal (chewed extremely well). On my first "dose" of almonds my husband even commented that I seemed way less gassy. My husband bought almond milk Saturday too and I have used that for cereal first think in the morning.

Another thing that's odd and could just be coincidence .... like I said, symptoms are worse in the morning. I used to take the PPI about 7am each day and sometimes go back to sleep. Since this all started, I wake up between 6:30-7:30 each morning and it's when I have the most symptoms... sore throat, out of breath a bit, lump in throat, dizzy and soon after shaky. Getting right up and having a small bowl of cereal with almond milk seems to help.

Hopefully I will get the CT result tomorrow and the new blood work and H. pylori results this week.

Post Edited (TummyBunny) : 4/10/2017 10:33:26 AM (GMT-6)

Posted 4/18/2017 9:40 PM (GMT 0)
Just wanted to give an update to anyone following along. This is now week three with no PPIs.

CATSCAN came back normal (other than very small umbilical hernia). H Pylori was negative. Negative for parasites. Additional blood work was okay.

The dizziness and fatigue are SLOWLY getting better and I am finally feeling stronger this week. My bowel movements are getting much more regular. You might all think I'm crazy, but I attribute some of that to the almonds and almond milk I started taking. It helps A LOT. Incorporating other alkaline foods also helps. I've been eating mostly light.

Today I had an appointment with an ENT for a consult. My hearing is great. My ears look good. My sinuses are fine. I have a deviated septum but that wasn't a surprise. He doesn't think my dizziness is specifically originating with my ears... rather it's a bi-product of something else going on (and he thinks in my stomach/digestive system - which was my feeling too).

He did put a scope up my nose and into my throat and said I clearly have LPR. He suggested I go back to the gastroenterologist (I already have the appointment) and get an endoscopy. I think my gastro guy would have ended up doing that anyway as the next step.

The ENT was EXCELLENT. I wish he could be my regular doctor! He totally agreed that it's completely possible some of my symptoms are from PPI withdrawal, and that I should stick with not taking them. He doesn't think they are worth the possible side effects in my case... and he likes to encourage lifestyle changes before long-term meds anyway. I like that in a doctor. :D

He also said to see a gynecologist and talk about hormones. I am in my late 40's and even menopause can increase reflux and dizziness! I'd read that, but didn't expect the ENT to completely validate the question (I cringed when I asked expecting him to give me that "you're nuts" look). He told me too, some people just have sensitive vestibular systems and get dizzy from anything that throws their immune system for a whirl... and mine all started with an awful stomach flu and messing with my PPI dosage.

So I don't have any definitive answers. What I did have was an appointment with a doctor who made me feel less anxious about everything and who validated me. That can make all the difference. He told me to keep on with the almond milk in the morning and at night if it helps my symptoms. He told me to sleep elevated. He told me to avoid eating anything 2-3 hours before sleep (that's HARD!).

Interesting to note. I have now seen several doctors. None have wanted me to go back on the PPI. And several have specifically told me not to, that it's not worth the risks and/or it's good I'm coming off them. The ENT really didn't seem to like them at all. The emergency room doctor was clear to say they are not safe long term. My gastroenterologist did not tell me to resume taking them. Even my regular primary doctor who is usually the type to say "don't worry about the side effects, just take them" - he told me to stay off them. Look, I'm the one who's allergic and sensitive to everything so I'm always wary of medication, but I'm also used to doctors who don't find that at all charming. In this case, they have all seemed to agree.
Posted 4/28/2017 3:42 AM (GMT 0)
Heard from someone else suffering with similar withdrawal, so it prompted me to post another update for anyone following my story.

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 :D
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...
Posted 4/30/2017 9:24 PM (GMT 0)
tummybunny...so happy for you....hang in there...it takes awhile to feel better! i made it and feeling better all the time...NO PPI's. just make sure you stay on a strict diet for a few months. you will feel less and less burning in your stomach when you wake up in the morning...that's how you know you're getting better! get some whole grain toast in you stomach when you wake up and drink your almond milk. that really helps! emtpy stomach makes burning worse! i drink almond milk all the time...and love it! hang in there. im 90% and believe me...im very happy with that!!! take care
Posted 5/1/2017 2:51 AM (GMT 0)
Thanks bythesea! I'm convinced the almonds and almond milk have really made a huge difference. I get up every morning about the same time I was waking and taking the mediation, but instead now I have 2-3 ounces of almond milk and it settles my throat and esophagus right down.

I am doing so much better. I've been careful what I eat and watch for triggers, but I'm also introducing foods slowly to see how I do and so far so good. When I eat something that disagrees with me, I go right for a couple of almonds or a few sips of almond milk and I feel relief. I haven't even touched a tums. I want to explore other alkaline foods as well.

Tomorrow I up my walking to 2 miles per day, so I really am starting to feel much better. I will never go back on PPIs.
Posted 5/1/2017 3:05 AM (GMT 0)
awesome! i always watch my triggers toooooo...that's why im feeling so good. sounds like you will be just fine!!
Posted 5/10/2017 1:08 PM (GMT 0)
Just another update...

I'm doing so much better. I've stuck to my regimen of 2-3 ounces of Almond Milk morning and night. I also have it with dinner if I think it might be a problem (like I've slowly been introducing tomato sauce to my diet). I still also eat small amounts of almonds after some meals (usually dinner, but sometimes bigger lunches). I can't tell you how much it's made a difference, it's like they are magical.

For the most part, I'm steadily improving each day. I'm back to walking daily. Last week I did a mile each morning and a mile in the evening. This week I'm up to 2 miles in the morning, 1 in the evening. It's good to be exercising again and to not feel like all I have the energy for is laying in bed!

I've lost track of how many weeks it is now without the PPI meds. Around six weeks I think. Sleeping inclined, doing the almonds and almond milk thing, and keeping my meal sizes smaller has really helped my quality of life. I even feel like the LPR is getting better now too.

I did follow up with a gynecologist to check hormone levels and all that... He's doing a complete workup over the next two weeks, but so far the tests his done have been normal. He didn't draw blood yet, but I'm going to insist on it when I followup with him on the 22nd.

All-in-all things are MUCH better. The dizziness is mostly gone, the fatigue is working itself out and I feel like I'm at about 85% of where I was before all this started.

A side note... my mother just talked to her doctor and started slowly weaning off PPI meds (also Pantoprazole). First two week she did every other day. Now she's starting every two days and Pepcid on the days in between. She's feeling a little off, but nothing too drastic yet. I think weaning off properly makes all the difference. She will probably never be off meds completely, but I'm glad she's getting off the PPIs.
Posted 5/10/2017 11:04 PM (GMT 0)
hi tummybunny....thanks for the update!! so happy for you!! you're moving right along in life...but yes, it definitely takes several months for body to heal! so happy for your mom...and yes, it does take time for your internal system to adjust to a normal level of acid in your body...and it's not easy getting off those ppi's. i think you have to believe that you will get better!! keep us posted...take care.
Posted 5/11/2017 2:54 PM (GMT 0)
45 year old, healthy female

I have been on Pantoprazole 20 & then 40 mg. It took me well over a year to decide if this is causing my off balance, sometimes dizzy whirls. This is a constant feeling. Just an overall blah feeling. Some days I can't keep my eyes open past 2 pm. Irritable, too. PPI is the only drug I am on.

I was taking it for the chest pain possibly associated with acid reflux. And sometimes a golfball feeling in my throat.

I eat mainly an organic diet. No artificial anything. I can honestly say, it's not food causing this feeling.

I have had scopes and 2 colonoscopies. Nothing was ever found. Blood labs were normal, thyroid normal. Vestibular therapy. Had 2 MRI's on the brain - Nothing found. Neurologists put on Topamax, Amitriptylene, many drugs to combat this dizzy feeling. Could be a migraine without the pain? After much digging I am OFF those migraine meds.. But I STILL feel the same.

Tried:
Cranial sacral therapy
accupuncture
chiropractic
massage

They were nice, but didn't improve my condition.

ENT ruled out MEniere's. He did suggest a low sodium diet, which has helped my left ear feel less full. That was an amazing trick!

I just can't go through another day feeling this lousy. NOTHING improves it. Even with enough sleep, I just want to lie down!

I informed my GI doc. He said to wean off. I am currently on 20 mg. Next week I will take that every other day, then nothing. He told me to use Zantac if I needed it. HOPING this will help me.

How long does it take for this PPI to get out of the system? I have been on it for over a year now...

Anyone have a similar issue? Did getting off PPI improve the off-balance feeling?

Post Edited (MHV1972) : 5/11/2017 8:59:42 AM (GMT-6)
Posted 5/11/2017 4:28 PM (GMT 0)
MHV I heard it takes some months of weaning to get PPI out of your system, like around 3 or 4 months though I suggest not stopping the PPI completely wean in smaller doses like 10mg then 5mg.
Posted 5/11/2017 7:14 PM (GMT 0)
mhv...don't just stop ppi's! cut them down to 10mg for at least 10 days, then move to 10mg's every other day for 10 days. i knew it was time for me to come off after 3 months because i started waking up in morning feeling better...then i would take the 40mg ppi and i would feel worse than before i took it. it's really tricky getting off of these because when you are weaning off of these you feel like you need them for the burning sensation. you could only imagine that these ppi's are removing all the acide out of your system for a year....what that would do to your physiology!! your body is use to this pill doing the work! anyway...take it slow...keep a strict diet...and you will feel a difference in how you feel...if you feel better and better with lower dosages, then you will know you are moving in the right direction! good luck, keep us posted.
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