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Doctors prescribing PPIs that cause side effects where I can't function

Does anyone else have a problem where their doctor does not believe them when they tell them their PPIs are causing bad side effects for them?  I've tried all of them and all caused extreme discomfort where I can hardly have a quality life.  Prevacid was the least of all the evils but I still have extreme nausea and lightheadedness.  I take the pill around 6 am every morning and the nausea tends to last till between noon and 2 pm.  When I wake up, I have no lightheadedness but within 15 minutes of taking the Prevacid, I'm lightheaded again.  Can't sit down nor lay down without getting dizzy and causing more nausea.  Cannot plan anything because I don't know if I'll be in bed most of the day crying or if I can get up and move like a normal person.

I cannot convince my doctor to try to put me on Zantac which I took years ago without problem.  Been taking various PPIs every day since 10/17/2008. Fom 9/8/2008 through 10/10/08, was taking only 20 mg of Aciphex but was taking so many other medications since doctor diagnosed IBS that I couldn't tell which one was causing the problem.  After endoscopy on 10/17/08 and duodonal ulcers found, all other medication was stopped which is how I identified Aciphex was causing major problem.  

I've had blood tests, CAT scan, MRCPs (two - one with contrast only and found dilation of biliary ducts; other one with contrast and secretin to check digestive juices and pancreas but that came back as normal).  Had heart checked with EKG, chest xray and stress test; headaches also a problem so they did a MRI on my head.  Later found Aciphex was causing the headaches and Prevacid doesn't cause me headaches but can't stand the nausea any longer. In essence, all tests have come back 'normal' other than the duodonal ulcers.  Only medication I'm on now is Prevacid, Tylenol (for pain), antacids, gas-x so this has to be the Prevacid or something else is wrong with me.  Don't know what to do next.

Anyone else experience this problem and if so, what was your outcome?  Has anyone been able to heal their duodonal ulcers with Zantac and if so, how large was your dosage?  Side effects?  I realize I'm about 15 years older than last time I used Zantac so side effects may get me this time but it's something I've at least had success with in the past.  these PPIs are about to kill me.
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Avatar universal
hi! i'm a 23 year old male who started getting acid reflux when I was about 18. i smoked cigarettes for about 2 years prior to when my acid reflux began and i am 100% convinced that smoking led to the eventual relaxation of the muscle in my esophagus that keeps stomach acid in the stomach where it belongs. for about a year, Tums would take care of most of my discomfort but as i continued to ween myself off of cigarettes and drink (rather aggressively in high school and college) my symptoms got significantly worse. i quit cigarettes for good years ago, but my situation is still getting worse.

i've been scoped about 6 times since being diagnosed and was found to have a condition called eosinophilic esophagitis which is basically a food allergy that shows itself in the base of my swollen esophagus and is marked by white blood cells--of course there is no way to test for the precise allergen that is causing the reaction. very frustrating!

i have had two allergy tests by an allergist as i have very bad seasonal allergies (hay fever, in particular) but according to both tests, i was found to have no food allergies. strangely, when i was 19 i also became lactose intolerant after never having any issues with milk, cheese etc. To this day i get allergy shots once every 2 weeks to relieve my seasonal allergies. this approach matched with zyrtec works very well but i tend to wonder if the shots may be contributing/causing to my esophagitis.

my "reflux" doctor tried every PPI in the book including nexium, prilosec and protonix to resolve my symptoms but none of these worked effectively. then i was put on aciphex which worked wonders! i was on this medication for about a year with ZERO heartburn and NO side effects so long as i took one pill every morning. then one day i started noticing unusually bad stomach pains. i continued aciphex for about a week until i decided to stop the medication to see if the pains subsided, which they did. the cramps were so bad (curling up in my bed bad) that i never went back to aciphex and have been on prescription Zantac, or ranitidine, for about 2 years. each pill is twice the dosage of the OTC 150mg pill. i take 2 a day and Still have discomfort every once in a while.  i was also prescribed a flovent inhaler for which i take 2 puffs twice a day and swallow the medication instead of inhaling it and i take 1 singulair before bed. the flovent and singulair are supposed to expand my esophagus, similar to how they would expand an asthmatic's airway.

about 2 months ago i became very fed up with taking So many medications (i'm 23 for christ sake) so i asked my doctor if i could try a PPI again to see how i would react. i tried prilosec and this time saw an immediate improvement in my reflux--just as good as aciphex had been years earlier. i had no heartburn! but within a week the intense stomach pains came back and i was forced to go back to my double douse of zantac.

i still drink on the weekends but Try to limit my quantity of alcohol. i never smoke cigarettes. lately, whether i'm drinking or not, i've noticed an increased difficulty swallowing and heartburn that is continuing to get worse. i don't like taking so many meds, especially since none attack my symptoms as well as the PPIs.

is there anyone out there with this rare allergy that causes gerd? any advice? should i quit drinking for good? am i allergic to beer? should i switch to mixed drinks.... should i stop eating red meat, eggs, potato chips, bread?? thanks for your listening!
Helpful - 0
Avatar universal
Well,.. After trying 3 PPIs and one Prescription strength H2 blocker,. I am left with very weird,. very annoying, very scary side effects which , after 3 months of being completely off all acid reducing pills, I am left with.

I have no idea how to get back to normal.

I have extreme lightheadedness to the point where I feel as if I am about to pass out. Very scary!
I have visible muscle twitching and spasms mostly in the upper right abdomen,. butt, shoulder, arm, side of knee, hamstrings.
I can feel palpitations in feet, butt, and other weird places.
I hack out a TON of skin cells and clear thick sticky mucus from mouth and nose on a daily basis.
I have a burning sensation in mouth, throat, and right foot and leg (not the acid burning sensation this is more like a chemical burning sensation)
I Have sharp pains in muscles,. muscle soreness and weakness.
I get a very tight chest and able to take only quick short breaths (difficulty breathing)
All these symptoms seem to get worse when I eat food.
My bowel movements are messed up...

I talked to a pharmacist and a doc about this and they said PPIs can not do this and after a few days once you stop taking the PPI , everything will return to normal and your body will start to make the acid again. They all say that something else is going on. They all say that its not possible. They all say dont listen to the internet.
I listened to them and went on their anxiety meds.,. didnt work , actually made probs worse,. I tried eating certain foods,. doesnt matter.

I am pretty much convinced that the PPIs have done this to me...
I dont know how to reverse the damage,.. I dont know if this stuff is stuck to my liver,. I dont know what to do... i cant take the lightheadedness and twitching and difficulty breathing, its too much...

If anyone can help me,.. please email/message me,..

thank you
Helpful - 0
Avatar universal
The reason for change in america is the change of what is call preventaive medicine.  It is recking everyone lives and the doctors don't seem to care.  Each time a patient comes through the doors with one illness.  They began at that moment prescribing preventative medicine.  What happen with our doctors can someone please help me with this answer. It is time to bring awareness to this crisis before everyone is injured or critically ill. Let's begin to fight back and take our doctors back in this country after all they are there to help us get better not worse.
Helpful - 0
Avatar universal
I feel we all should come together as people and view the doctors that are prescribing all these medication that put our lives in dismay.  I have diabetes and became a victim of the medical field.  I am prescribed all kinds of medication for illness I don't have and all I heard is take this for precaution.  I inform my doctors of the side effects of the medications and continuouly, I hear it is impossibl and continue taking it because it is to help prevent this illness.  I don't want anything to prevent a illness that I may never have but have other problems occurring from what was prescribe.  This is a serious problem that needs to be address.  If our coverage for medical services is in need of change, then they must look into the benefits that doctors are receiving in assisting the pharmeuticals who paid to have these products force unto the public.  We as people go into our doctors office with hopes to feel better and yet began to feel worst because of this practice.  It is time for us as people to stand and fight what is going on in our medical doctors office around the world.  We must fight back with a lawsuit that hopely gain better ascess to real care and now be numbers of pharmeuticals who has doctors caught up in their hands.  
Helpful - 0
681148 tn?1437661591
I used to take Prilosec OTC twice a day as that was what I was prescribed.  Fortunately, I had a friend warn me that this was not safe to do.  Unfortunately, it was too late for her as it had destroyed the lining to her stomach and her small intestine.  I had wanted to do something else right about the time that my friend had warned me that taking Prilosec like this was really bad, because it was making me so nauseous and just plain miserable.

Fortunately, another friend told me about her experience with taking Benadryl and noticing that this reduced the symptoms from her GERD.  She did research about food sensitivities and GERD.  Sure enough there was a clear connection.  When she told me this, I tried the experiment of taking Benadryl when my GERD was really bothering me and it made a BIG DIFFERENCE.  So, it turns out that my GERD was also caused by food sensitivities.  I had to figure out the food sensitivities through a food elimination challenge diet.  It made a huge difference figuring out what was causing me to have such terrible GERD.  

So, now I watch what I eat and don't have any more symptoms of GERD caused by foods that didn't agree with me.  I still take Benadryl for my allergies, but I no longer have to take it to help with the GERD symptoms.  I may have to have food limitations now, but I know it's a lot safer than taking the dangerous PPI's that would've destroyed my stomach lining and/or my small intestine lining by now.  And, it turned out that my food sensitivities are actually among the most common food sensitivities that people have.  I wonder how many other people with problems with GERD actually have food sensitivities that they're unaware of.

An added benefit to discovering all these food sensitivities is that I lost a tremendous amount of weight and I'm no longer pre-diabetic.  My total cholesterol is better and my triglycerides are down to safe and normal.  The last time my cholesterol was checked I still had to work on my LDL and HDL numbers.  I'm sure those numbers are better than they were over a year ago, too, since the total cholesterol was down to safe and normal.

My previous GI doctor had dropped me like a hot potato when I would no longer take PPI's.  She did me a favor by dropping me like that, if that's her attitude!  My new GI doctor is impressed with the progress I made with my GERD, since I am able to now manage my GERD without any reflux medication at all--including antacids.  He's also impressed with what I've been able to do to improve my IBS, since many of the food issues I had were affecting my IBS, too.  I still need to take the antispasmodic medication on occasion for my IBS, but that's a whole lot safer than the PPI medications meant for GERD!

A naturopath is the one who helped guide me through the elimination diet to figure out my food sensitivities.  Food sensitivities are different from food allergies.  I test negative for all the foods that I know I'm sensitive to when the allergist tests the IgE responses to those foods.  The difference between a sensitivity and an allergy is that an allergy wil likely kill a person, whereas a food sensitivity will only make me sick.  The traditional allergy tests don't work for food sensitivities.  Even my allergist knows this and told me that he knows of patients who test negative to milk allergies, for example, but if the patients were to drink a glass of milk in front of him they would have an obvious reaction right there in front of him.  The good news about food sensitivities is that they won't kill the person with the sensitivity outright, like a food allergy can.  BUT, that doesn't mean that people should eat the things that they know they're sensitive to.  The food substances must still be avoided.
Helpful - 0
Avatar universal
You are not alone.  Look up prilosec and prevacid on askapatient *******
Tons of people including me are having serious adverse side effects and for whatever reason (perhaps $$$) are being completely ignored.  I've had every test under the sun from blood work ups to spinal taps and apparently nothing is wrong with me despite having lost 30 pounds in 6 weeks along with a ton of other symptoms.  I'm just written off as being depressed and having anxiety attacks, but my life was going just swimmingly up until my 6th week of taking Kapidex (a stronger dose of prevacid).  I am concerned that the lack of acid in my stomach has destroyed many of the enzymes in my stomach depriving my brain and body of critical nutrients and I can't seem to get anyone to listen.  My GI prescribed antibiotics and assures me that rats can thrive just fine with a sterile intestinal track.  That makes me feel wonderful.. maybe I should remind him that rats can also chew through steel and eat ****.  If any qualified and competent nutritionist or health care professional reads this and cares to help, please email me.
Helpful - 0
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