An important story to tell

Treatment and medication
1

Earlier this year in march I moved my family across the US for a new job. When we got to our new locationi noticed my voice was scratchy. I thought it was just a sore throat and would go away. It turned into globus sensation and got very annoying. Finally i went to the doctor and he prescribed me Zantac 150. I didnt want to take Zantac because i was worried about side effects. I asked for a referral to an ENT.

ENT doc looked down my throat and said it looked like i had some inflammation. he prescribed me 1 month on omeprazole. i took the omeprazole and my symptoms started to get better over the course of the month. after the month was over i discontinued use and things began to get a LOT worse from here.

i began having severe stomach burning sensations, stomach cramps, light headedness upon eating food, and weight loss. this all started causing severe anxiety, i was scared i had cancer or something. I went to the ER and the doctor told me i needed PPI. he prescribed me zantac because i told him no about the PPI. within the next week or two my esophagus started to close up and i could not swallow anything except liquids. i was living off of boost and ensure. by this time i had lost about 20 lbs. i took myself to the ER two more times where the docs couldnt tell me what was wrong.

finally i got into a GI doc and they scheduled me for an EGD. i would have to suffer through the
weekend in agony while i waited for my EGD. Over that weekend i couldnt eat, i couldnt sleep, and i was having a lot of muscle twitching at night. I remembered i had a bottle of chelated magnesium 250mg. Thinking this would help my muscle twitching because it is good for muscle health i said screw it and took two.

this is the first night i could sleep again.

the next morning i woke up and i could swallow again.

however i still had to get an EGD on that Monday and my fiance urged me to do it for peace of mind. everything was fine, except when the doctor biopsied my stomach, my stomach continued to bleed. I had to have another GI doc fix it and what do they prescribe to heal GI bleeds? PPI.

I was on PPI for another 4 months until now. i started to have severe back shoulder and right arm pain. i was also taking 500mg of magnesium a day while on the PPI but it didnt matter because it completely stops my body from absorbing magnesium. 2 days ago i stopped my PPI. i am currently using rolaids, gaviscon advance that i ordered from the UK, and zantac as needed. however my back shoulder and right arm pain is probably 80% resolved, along with a large portion of my anxiety. magnesium deficiency also induces anxiety and stress. does that sound familiar to anyone?

anyways this is my story. i have no idea if anyone else has a similar story or experience but i hope this helps someone out there. what i went through i wouldn’t wish on anyone.

2

hi Michale here is my story and how ppi ruined my life

2.6 yrs now when i first took the ppi , i wish i can go back and undo that. i was having headaches ( usual as i sit infront of PC for 8 hrs) i thought i should go to doc and see what's the problem. ct scan showed nothing . doc gave me antidepressant and one ppi to take every morning. i trusted him and took those med for 4 weeks. after stoping i suddenly started getting hyperacidity sour erruction. i went to gp and he gave me more ppi . i didn't knew anything about rebound. i googled the med and saw its for acidity and as i was getting a lot of acid i took it again (big mistake) . after few weeks i tried to stop again . but acid is more intense then before i could not even tolerate it . went to gastro , he did EGD and a couple of blood test . all normal he handed over same thing with different brand. i was starting to experience severe anxiety stress . went to different doc for opinions. all r same .

by the time i knew about rebound it was too late . i was starting to experience stomach pain . after 1.5 yrs i had another endoscopy which showed mild gastritis . doctors started to blame my anxiety and put me on high dossage of antidepressants. i told them its not the anxiety that making the problem , its the problem that creating so much anxiety.

no use after 6 more months i started to get globus . regurgitation of undigested food and water, pressure on esophagus, easy dental bleeding, blood in stool . went to ent spl guess what he did? increased my ppi dosage . and that made it worse. so after suffering from globus for 8 months i decided i will not take this ppi .

next morning i started taking zantac instead 2x150mg zantac which did nothing i end up with too much acid . god hell of a situation it was . i had to increase my zantac 3x150mg . after 2 months of taking those zantac my globus, indigation , regurgitation all symptom are gone but the rebound gave me stomach pain . probably ulcers .

now i am able to reduce my zantac from 3 to 2x150mg still geting stomach pain but atleast i now have some good days . i still could not sleep well and get alot of unwanted thoughts all the the time. your post gave me a good reason i think i have magnesium deficiency after 2 yrs of ppi . i will try to supplement with mag now see how it goes.

i think doctors should stop overprescribing this med and make patient aware about the consequences.

3

I was on PPIs for almost 4 years. I absolutely have the much of the same symptoms back, shoulder issues that you are experiencing. Much of my symptoms are on the left side. I get episodic tightness in my back, ribs, neck which all refers to my legs/arms. Whenever my back is tight is when my extremities get the referral. Many people on this board experience this to different degrees. You are indeed lucky that much of your symptoms have resolved. My symptoms are improving but my feeling is that it will take a long time before that happens. Shutting down acid production does more than affect your magnesium but that seems to be a main culprit. It's a good thing you recognized it and did something about it. Many doctors still believe that PPIs are harmless. Good luck in your continued recovery.

4

My doctor wanted to put me on Lyrica for my muscle tightness. Needless to say that he is no longer my doctor. Most doctors want to prescribe drugs to treat symptoms b/c it's not efficient to investigate what the problem is. So much easier to prescribe a drug and move on to the next patient.

You are absolutely right about over prescribing. For many years PPIs have bee so effective that it was an easy thing to do. FDA now has specific guidelines on when it is appropriate to take PPIs. I doubt doctors follow these guidelines. Manufacturers have finally issued warnings about long term use of PPIs but more observational studies need to be done to provide a solid link but this will take years and years so I won't hold my breath.

5

thanks to both of you for your replies and i hope you both continue to find success. alongside the magnesium i am taking fish oil for joint health, i am taking the sublingual version of b12 (ppis also deplete you of b12, i take a daily multivitamin, and something i just added as well is digest extra (digestive enzymes) as well as a good probiotic. i have done a lot of research on the subject of acid reflux and what i have come across is that a lot of the times indigestion is caused by lack of acid. this lack of acid causes food not ti digest properly creating gas. the gas erupts out of your stomach into your esophagus and causes the irritation. for the low acidity j have began taking betaine HCL. you must go light on this especially if you just quit PPI because your stomach is not used to having acid in it and it needs to learn how to produce a proper mucus layer to protect itself again. with the betaine HCL your food digests as it is supposed to. you dont get the gas and reflux because the food is not fermenting, instead it is breaking down and moving the propee direction (down not up). there is a ton of anecdotal evidence about these things on the internet. i know it is really scary to add acid to an acid reflux situation, that is why i didnt try this for a very long time. however if you have gastritis or a history of ulcers betaine is not a good idea and i would probably do something more mild like apple cider vinegar as well as the enzymes and probiotics. i will keep in touch here as my story unfolds and as long as anyone is interested. best of luck to us all. stay positive. if you are still breathing you can still get better!!

6

ACV is how I was able to get off of PPIs. I was scared too but it made total sense to me that lack of acid was not promoting proper gastric emptying which was making reflux unbearable. Agreed that for some people this is a contraindication but I would be willing to bet that a majority would benefit from it. I too take all of the supplements that you mentioned and I can't say if it's absolutely helping but I think it would make sense to supplement for things that PPIs have taken away. Keep sharing. Brainstorming is how we can help each other get out of this hole that we are in. Best of luck!

7

hey jleerph.

i wanted to talk to you because i quit Prilosec about 4 weeks ago and I'm still having lots of back pain and shoulder pain. the back pain is right in my shoulder blade area and it goes straight through to the front of my shoulder and to my arm pit. sometimes i wake up with numb arms and my big toe goes numb too at night. I'm just wondering because i read at online that people's side effects tend to improve rapidly but i know yours haven't completely gone away. was your improvement pretty slow over a long period of time or did you improve rapidly and kind of plateau? i want on them for about 6 months but i for down to about 135 and I'm a 5'11 male..27. so my thought is that i probably had very little vitamin reserves and the ppi basically made me use up the rest? i just feel this enduring tightness in my upper body and shoulder area. i definitely am not having severe pain attacks but it's pretty consistent. I'm still taking my daily vitamins and i think they are helping but like you said it's hard to tell. if you could provide as much info on your side effects and recovery as possible i would appreciate it. thanks!

8

michael911,

Congrats on the fact that you successfully got off Prilosec. That is no small accomplishment.

I will try to answer question. I definitely had the same issue of the shoulder blade and arm pit. Just for reference, I was on Prevacid 30mg for about 4 to 5 years and I have been off of it for the last ~ 2.5 years. My improvement is still an ongoing thing. The most frustrating thing is that here are days I feel good and other days not so much. I can say that over the last month the good days are better and the bad days aren't as bad. I would like to think that this will be the pattern going forward until I plateau.

Here are my thoughts about this whatever this is we are going through. Please take it with a grain of salt b/c everyone's experience is different. Keep taking your supplements. I know it may feel like they do not help at times but I really believe they are helping your body "normalize". I have "knots or adhesions" in many areas of my back muscles. For whatever reason, trapezius and levator scapulae are just in a holding pattern which in theory was causing a lot of other issues in my ribs, stomach, lower back and down to my legs. I am attending physical therapy sessions and this is what the PT told me. He told me that I need to address the tightness and wake up the "neuromuscular" pathways. Problem is that we don't know where the origin is so you have to poke and prod to see what works. I have been and are still attending PT sessions. Treatment includes dry needling, deep tissue massage, active release techniques, and use of TENS apparatus. I do know that the knots in my trapezius have improved. Nowhere near as tight as they used to be. There were a lot of days where I just wanted to give up b/c I couldn't get my head around why I was seeing improvement and followed by regression.

I will leave you with a message of hope b/c this board is filled with gloom and doom. I have seen enough improvement to start running again. I finished a 5K race a couple of weeks ago and am scheduled to run a 10K at the end of this year. Keep at it. I was on this poison for a long time so if I can do it, you should be able to recover too. Please let me know if there is anything else you want to ask.

9

jleerph,

thanks for the informative and positive response as usual. you seem to have a good grasp of the struggle backed by much research and personal experience. i am going to consider looking into a massage therapist in my area and see if my doctors thinks that physical therapy is a good route for me to go. my last doctor just thought I had a rotator cuff issue and i went to pt for it but since that wasnt my problem it wasn't effective. if the pt was as extensive as yours i might improve more. i think you're absolutely right about knots and adhesions because i will feel them one day and the next i almost dont notice them at all. its like little contractions or myofascial adhesions, it often times feel like the muscle has been worked out, and it just clamps down. its so very strange. i just like having support and someone that understands what i am going through. and i just want you to know you have been a great source of hope, understanding, and information on this forum not only for me but for many others like is as well I'm sure. thank you! i will continue to update per usual.

10

I didn't even ask my doctor about PT. I am extremely lucky that I have good health insurance and that I could go see one as needed. I hope you find a good one. Like doctors, good PTs are hard to come by. Anyway, I have many youtube videos that I use for addressing issues in addition to suggestions from my PT. Once you speak to your PT, I would be glad to share links via private messages if you need suggestions. The knots that come and go are maddening. As I write this, I have this nagging tightness down the back of my left rib cage. All one big chain. If you do something to one link then the others react and not always in a positive way but I think the fact that I get a reaction is a good thing. I look forward to reading your updates as you and many others on this board are an invaluable asset. Please keep fighting the good fight.

11

hi jleerph,

i hope this message finds you well. i am about 6 weeks out now. the reflux issues come and go. some days i get that nice big knot in the throat feeling, sore throat, etc. some days i am mostly fine as far as that is concerned (like today!) something that seems to come and go, and i apologize in advance for this but my bowel movements are very irregular, from constipated to very acidic diarrhea. this part is bothersome but it still isnt my main concern. my main concern is this unbearable tension in my shoulder blade region that tends to affect my trap/beck area and in front of my collarbone when it is bad. its like i cannot for the life of me learn to relax my shoulders, and when i force them down it is like an extremely taut rubberband! i have taken your advice and sought out PT in my area. my doc is going to put in a referral so i should be able to get in fairly soon. the pain is almost always there and causes me a great deal of anxiety and angst. im always worrying it is something more serious etc, but i refer back to the scans and endoscopys and tests ive had when ive gotten myself really worked up. ive also made an appointment with a massage therapist so that she can help pinpoint some of these tense muscles and trigger points. just wanted to give you an update that i am hanging in there and i will continue to fight.. have you tries dry needling/cupping? anything in particular that seems to help you the most? i think i definitely have a posture issue that is making things worse as well as a job that made me do a lot of repetitive motions with my right arm that probably exacerbated my issues.

have you done any cool races or anything lately? do you have a regular work out routine for your continued muscle health? i love getting your perspective, being that you have been dealing with this for so long it gives us all hope.

cheers,

mike.

12

michael911,

Great to hear from you. Hope you had a great holiday and are looking forward to a healthier 2019. In regards to the irregular BM, I did experience this but not to the degree that you are experiencing. I had BM every 2 to 3 days instead of daily and they were very soft and not well formed. As for the "tension", I had/have all of what you experiencing. For me, dry needling was the most helpful. You got immediate feedback in the form of muscle twitching which can be translated into "muscle reboot or reset". I think I went thru 6 or 7 session of dry needling all over my back muscles as well as areas in my pectoral muscles. Needling in teres minor/major was not fun for me. I could probably use some more sessions. I have tried cupping as well but not extensively b/c needling for me was better. Cupping theory does make sense as increasing blood flow is great for healing. Currently I am doing some PT exercises at home that address shoulder and serattus anterior instability and activation. These seem to be helping. I would be glad to share links with you in a private message if you desire. I know it's hard to see the end of the tunnel but I really believe we have to get and keep our bodies moving. Our muscles are in an abnormal pattern and we have to wake up the normal pathways and get them back to normal. It sucks b/c along the way, it feels like you are taking steps backwards. I think the abnormal status doesn't like what you are trying to do to return to normal. I have a race at the end of 2018 but will have to see as I am having some lower leg issues. Due to all of the crap going on in my back/shoulders/ribs. I try to exercise 3 times a week. Typically it's just cardio (elliptical or treadmill). If I do resistance, it's with bands as I think it's better for my condition. Bands force you to use lot of your stabilizing muscles which require a lot more activation. Another theory but it makes sense. If you are going to try and address your trigger points, get yourself a good foam roller, "back buddy", and/or myofascial release ball. I am sure your PT will recommend these to you. Good luck and Happy/Healthy New Year.

13

how on earth did u managed to get offfrom ppi i have been trying ever since i took them after 2 months. now i took them for what look like 2.5yrs. i stoped taking ppi 7months ago and started on zantac and am still taking 300mg zantac everyday and suffering from pain 24x7.

my stommach just keep producing acid all the time. how did u do it? what are the alternative you took to get off of it. please i am in desperate need of help

14

Please refer to my other post. I hope this goes thru. I think this site frowns upon links.

https://patient.info/forums/discuss/omeprazole-has-ruined-my-life-664169?page=4&utm_source=forum,sendgrid&utm_campaign=comment-notification,Patient.info&utm_medium=email,email#3449776