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Who else has had bad side effects from PPI's?

Posted , 7 users are following.

Glennie68
Glennie68

Hi!

I've been officially diagnosed with a hiatus hernia since August this year - after a few years of symptoms - and 2 years of PPI's of various strengths. I found as the drug gets into my system I get terrible cramps, sore legs, horrific tiredness and loss of taste - now on ranitidine - which is not as good - but still not ideal. I am hoping to get an operation - as I can't go on this way! I did have a stage of having domperidone too - but I ended up with constant regurgitation! Sick of being pumped full of drugs! I have given up everything I like - so that I don't have constant pain. Does anyone else feel like the drugs make more problems?

0 likes, 35 replies

35 Replies

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  • lynne90477
    lynne90477 Glennie68

    Posted

    Hi Glennie

    I have been unwell since last October - after numerous tests was diagnosed with a small hiatus hernia and some inflammation )possible Barratts). I take Esomaprazole - which I have never get instant relief from so dont really know if they are doing me any good or not but I keep taking them as I worry what damage the terrible chest pain/heartburn I have is doing to me. Domperidone sometimes I feel they help other times I think they make me feel worse - never experienced reguritation but do sometimes have a metal taste in my mouth. Like you I am sick and tired of being pumped with drugs and shuffled from Doctor to Doctor - I have seen 4 Gastroenterologists so far, each time they want me to try different drugs none of which relieve my pain.

    Have you had PH Manometry test?

    It seems from this forum that there are lots of others suffering like us!

    Best wishes,

    Lynne

    • wanda39848
      wanda39848 lynne90477

      Posted

      Hi my name is Wanda and yes I had the Ph manometry test and my nocturnal reading was 46, which should be about 3. I did have a bout of Helicobacter snd apparentlt it went undiagnosedfor such a long time until a pathologist relative told me to ask the Dr for the H.pylori test. the resding was very high and I had to have 2 treatments of the triple medication before it subsided. It then left me with gastritis and I have been taking probotics and slippery elm capsules from the health food store now for 2 months. Had fairly good results until yesterday when I ate curried prawns and now my hiatal hernia is giving me hell and cannot lie down because of the reflux and acid burn in the throat.
    • lynne90477
      lynne90477 wanda39848

      Posted

      Hi Wanda,

      Sorry to hear you are also struggling.

      I had PH manometry last March which showed NO acid! and LES too tight! The manometry was repeated last August and again showed my LES was too tight. Wishing now I had insisted on PH test again (although it was not a very pleasant experience!) as I am not convinced there is no acid. It seems surgery is not an option for me.

      I had Sunday dinner yesterday and had terrible chest/backpain last night - if I didn't take sleeping pills don't think I would get any sleep for the pain.

      I think we have to keep on pestering Doctors and hopefully they will help eventually!

      Best wishes,

      Lynne

    • nezra
      nezra lynne90477

      Posted

      Hi Lynne I was told by one consultant that the result of my ph test wasn't too abnormal which I was totally miffed at as it was a horrible 24 hours and I had constant acid reflux and eventually had to stop eating and just drink milk as I couldn't bear it without my ppi's. I was then told recently by another consultant that it showed I obviously suffered and straight away referred me to a surgeon! So it might be worth a try getting a second opinion! I rarely actually see my consultant it's usually registrar. Thankfully the last time I did and I finally got somewhere 
    • lynne90477
      lynne90477 nezra

      Posted

      Hi Nezra,

      Yes I agree not a very pleasant 24 hours but I would go through it all again if necessary. So as you say maybe I should get a second opinion although I have to date seen 4 Gastroenterologists! they all pass me on from one to the next! It seems they are of the opinion that I have a hypertensive lower oesophaeal sphincter but the tablets prescribed so far have made my heartburn/chest pain worse.

      I have a follow up appointment in January - which seems an eternity away.

      Are you still struggling or are you able to have surgery?

      Best wishes ,

      Lynne

    • nezra
      nezra lynne90477

      Posted

      I have my first appointment next month with the surgeon, I am hoping he/she won't deny me the operation but my gastro consultant has said there is nothing else in regards to medicine that they can offer me! I haVe stated I no longer want to take tablets so surgery is now the only option. Have you been given different meds to try? Iv had several different ones that I experienced side effects with or found didn't work with me at all. Iv had symptoms so long now I just resign myself to it and put up with it I guess but I don't like relying on tablets and I have said this to them. I hope you get a breakthrough somewhere it isn't pleasant to live with at all. 
    • Glennie68
      Glennie68 lynne90477

      Posted

      Hi Lynne, I haven't had a PH test yet - but if having one would mean I got the op - I'd have one. I read of someone on here who had had a pressure test - and they found that their hernia didn't seal - I actually think that is one of my main problems - if I drink half a cup of water and then a few minutes later tried to touch my toes - I would end up with water in my mouth again. It's like the rubber band is stretched so far it doen't work anymore! It could be a reason why my taste gets so warped with the drugs too - as they don't stay in my stomach.
    • lynne90477
      lynne90477 nezra

      Posted

      Hi Nezra,

      Thanks for your reply. Yes I have tried umpteen different tablets nothing seems to work, like you I hate relying on them - I have another appointment tomorrow with my GP. Have to keep pestering him I think. There must be something they can do!

      I hope your appointment goes well next month - make some notes before your appointment to make sure you remember to tell them everything!

      Best wishes,

      Lynne

    • wanda39848
      wanda39848 lynne90477

      Posted

      Lifting is a general no no with hiatal hernia as it causes the hernia to go up into the chest cavity. My husband went into respiritory failure 17 years ago from lifting a very heavy rock. At the time it was thought that he had a virus that was going around didn't think to say that he had lifted the rock. Had 10 days on the ventilator andwas told that he had very little chance of survival. He wasairliftedto Sydney RPA hospital for lung testing etc an found nothing wrong with the lunds. It took him 4 years to really recover. He had knee replacement 2 years ago and went into what the said was cardiac arrest 14 hrs after surgery. It was from lying flat on his back for the length of the surgery. It just isn't possibleto lay flat for  that long. Said his heart stopped  duringthee op. I can be very dangerous and cause shortage ofoxygen to the brain ifa strict diet isn't followed. I can trll you we have had our fair shareof woes all because of hiatal hernias. This is all fact ond not fiction. Hope it help others to realise just how dangerous they are. The say my hernia is not an operation option. Stress makes the acid worse. I cannnot believe that the manometry didn't show acid.

       

    • wanda39848
      wanda39848 nezra

      Posted

      I see that you say you drank milk. Milk was one of the things that I was told not to drink because of the fat content. No dairy products at all. I don't do sugar, milk, coffee, tea (except the odd herbal tea).No spices not a lort of fruit particularly citrus frui.I have seen a professor in Sydney at St george hospital and she says that I have irrirable bowel, whic is apparently waht causes hiatal hernia because of the slow motility of the bowel when somethging you eat doesn't agree with you being able to digest that particular food. So many different answers to ones questions regarding Hiatal hernias. Stress makes for an acidic system also and causes breathing difficulties. have been put on anti depressants because of the Post traumatic syndrome from a lot of stress. It is a very difficult thing to sort out. I have been to many dieticiams and they all have different opinions about what to eat. it is just a matter of trial and error for each person because the professor said that not ll people experienc the same food intolerances. Hope this helps someone and don't think me a hypercondriac. Been to hell and back for too many years.
    • wanda39848
      wanda39848 nezra

      Posted

      Just to add al little more. i also take Motilium or colofac tabs 1/2 hr before eating asthis help the food pass down. Sometimes it helps sometimes not just depends waht I eat. Some things I eat I break out in sweats and then get the shivers. My blood pressure goes sky high. Is there anyone out therewho had high blood pressure. i have to take blood pressure medication 22 times daily. One tablet of a morning and a different one at night
  • karen65408
    karen65408 Glennie68

    Posted

    I was finally diagnosed with "silent reflux" 3 years ago, after years of thinking all my nose/throat problems were due to blocked sinuses.  Had a hernia op after omeprazole had no effect. Certainly helped the painful chest etc, but not the reflux, so have been on different drugs ever since.  The main side effects for me were intense tiredness, & dizziness/vertigo.  The hernia re-appeared about 6 months ago - started having the swallowing/chest & back pains again. I think I'd had the hernis since adolescence, looking back at my memory of strange symptoms I always ignored! I stopped taking any drugs about a month ago, & am using slippery elm powder instead.  My symptoms have certainly not got worse! & I think may have improved.  At least I'm not getting the side effects of the drugs any more.  I gave up all dairy (cow's milk products) years ago as I react badly to dairy protein with copious amounts of mucus.  (But can still eat butter & cream :-) ) I eat goat & sheep's cheese instead.  I sprinkle the slippery elm powder on my breakfast cereal & moisten with fruit &juice.  You can get capsules but they are very expensive & apparently eating the powder is more helpful if your throat is affected by reflux.  The reflux symptom that bothers me most sometimes is the way my voice suddenly goes croaky or disappears!

     

    • Glennie68
      Glennie68 karen65408

      Posted

      Hi Karen, I feel tired all the time! I really have to push myself through a day at work. I have a sore throat most days - so I know where your coming from. 

      Have you been back in touch with the hospital where your sugery was done to see what can be done? I have heard it can reccur - I still want to give it a go - as right now I feel like I take tablets to feel like crap!

  • wanda39848
    wanda39848 Glennie68

    Posted

    Beginning to believe that I do have more problems because of the cocktail of drugs that I am on. Have high blood pressure and I believe that it is caused from the struggle to breath when i eat the wrong food.Take on type ogf a morning and another at night. Have to prop up to sleep and when I lay down it is like as if my stomach falls right up under my liver and suppresses my lungs. I am 76 and have had this since a small child. Children can be born with a reflux problem and it is never diagnosed as hiatal hernia. Some people are born with a larger than normal hole in the diagphram and allows the stomach to poke up easier.  I too am going to speak to a surgeon again about surgery. I have been told that it is not operable.

     

    • Glennie68
      Glennie68 wanda39848

      Posted

      Hi Wanda!

      Good idea to speak to surgeon, take a list of your meds and a list of questions. I had a friend with gallstones who was told by one surgeon he wouldn't operate because they were too big - the second surgeon operated and she hasn't looked back. Maybe in the meantime have a chat with your doctor - and see if they can sort through them meds and find some that don't make you feel as bad.

    • wanda39848
      wanda39848 Glennie68

      Posted

      Yes I had my appendics out at 8 years of age and they said that I woudl be O.K. Not better. Had my gall bladder removed in 1997 and still no better but i did have one very large gall stone and heaps of little ones. No better. I have been to a professor in Sydney and she said that i have Irritable (food intoleranceand that is my problem not the Hiatal hernia. The bloat from the foods that my body wont digest causes the pfessure and that is causing the Hiatal hernia. It iss a very visciouscircle. Thanks anyway.

       

    • Glennie68
      Glennie68 wanda39848

      Posted

      Hi Wanda, Sorry to hear that - you must have had years of discomfort. I do wonder if they could look at your meds in general - and see if they cause intolerances too. When I was on Lansoprazole chicken always tasted off and I couldn't bear eating it. Pantoprazole made everything taste of chemicals. Domperidone - we won't even go there - was awful! I did read an interesting article that IBS bloating puts pressure on hiatus hernia - but the IBS is caused by the medications that screw up your digestive system! I really hope you feel better soon!
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