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Long lasting flare ups scared

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Torialouise
Torialouise

Hi everyone

I have had silent reflux for years but recently started with what I think are GERD flares although Gastro have not got as far as giving them a name. I failed my endoscopy because I woke and had a panic attack, barium showed reflux nothing else, Ct been done but results not back yet. No other tests performed.

I keep having random bouts of a bad night bringing up acid for hours, then the next day when I get up my hunger has gone, the acid continues and I find I can no longer eat, I am full even though I have not eaten.

I get a lump in my throat and pressure mid chest as well as the acid.

The acid and hunger takes months to settle then just randomly it comes back.

Take 80mg esomeprazole then in a flare add 300mg zantac and pepto bismol as required. Even this is not enough to calm the acid.

My GP has no idea what else to do, went wed to her office in tears and she looked almost as helpless as me.

I saw a dietitian who could not help who sent me to a gastro nurse who said she had no idea either.

My gasto just says up esomeprazole each time i get to them, I was taking 20mg when I started seeing them.

I have lost over 3 stone due to not being able to eat, hairs coming out, on fortijuices but still loosing weight.

Is this normal for GERD? I see others mention flares but say they have 2 a week etc mine just does not let up.

I am scared and confused whats going on feel so lost and getting nowhere with gastro each appt has a 9 month wait between. I am going to be skin & bones before they help me?

4 likes, 26 replies

26 Replies

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  • 1diamond_owl
    1diamond_owl Torialouise

    Posted

    Hi there,

    Like yourself, I'm still looking for answers that I coulndn't find at all. Whatever you're experiencing right now I 've got it as well. The feeling of fullness,there was one time that it's already late in the afternoon and I haven't eaten anything since dinner.The ever present globus sensation , the feeling of something is stuck in your throat.There is actually a burning sensation in my tongue as well, dizziness and lately the "popping" sound Which I've read in this site is new to me. It sounds like you're smashing 2 marbles together. That's the closest comparison for me.Constant burping they come in  pairs and if I'm not that busy I try to count them.Pain on my shoulder blades.The chest pain is there probably the tension of the  acid build-up,and just this morning I got so scared I thought I  was choking.I also can't sleep at night and been worrying so much about this globus.Just letting you know you are not alone. Be well. Take care.Our body has its own healing mechanism. You will be fine.

  • anastasia51692
    anastasia51692 Torialouise

    Posted

    Hi torialouise

    I am so sorry that you are suffering so much. Are you doing the usual gerd things like not eating to close to bedtime and avoiding the usual culprits, chocolate, spicy food etc? Raising your bed a few bricks? I went through a similar scenario where the doctors just did not have a clue what was wrong with me or what to do about it. I guess if you haven't done the endoscopy you donT know if you have h pylori? Do you have another test scheduled? I had to take matters into my own hands as everything was taking too long and saw a nutritionist and did some stool tests with her. It was very informative - showed I had severe gut bacteria imbalance and overgrowth of yeast plus parasites. Completely messed my system up. I started off with heartburn and shortness of breath to chronic belching and bloating to pain in my gut, diarrhoea then constipation etc etc - I really could go on..... I have now changed my diet to the gaps/scd diet. It works to stop feeding the bad bacteria, and repopulates the gut with beneficial bacteria and also heals the gut. I have also heard about people who have been successful following the Dropping acid book although I haven't yet read that myself yet. I would really recommend looking at diet if you haven't done so already to get you through this awful period of time. It may really help you

    • Torialouise
      Torialouise anastasia51692

      Posted

      I dnt eat at all i am on replacement drinks called fortijuices they are a liquid they give to people unable to eat in hosp. Been on them for 2 years i get odd periods where i can manage a light meal but it's what most people would eat for a snack and is once a day but most days it's no food at all.

      As i had silent reflux for 20 years my diet already is bland before these odd flares started, dairy free, nothing acidic, I would no longer know what spicy was lol. I have IBS also and have problems with insolusble fibres so am limited even on the days i do eat. Also veggie so there is no meats going in. Although i eat tuna and haddock. Dietitician said nothing in my diet was likely to be causing it she saw me twice and packed me off so little i put in.

      I do have awful thrush issues but my docs do not believe in it causing a problem, I have had a year of repeated issues on a tab once a month to keep it under control.

      No other tests planned due to see gastro erm dont know yet as its 2 months late already even getting the appt through, but with these results.

      They could not do helibactor test anyway as i was not able to come off the ppis for my endo even if it had gone deep enough.

      Long story, but hosp told me to put nexium up to 40mg twice a day and I went home and started taking 4 tabs a day instead of 3 but some wiseguy at the pharmacy changed the tablet size to 40mg ones without telling me and i started taking 160mg a day without knowing took me 2 months to notice. I had been on 20mg tabs for 20 years had no idea someone was going to just change them. But imagine the rebound when i tried to lower for the test.

      Since then i had managed to get back to 60mg and had started eating a small meal most days around 3pm but this flare statted 2 weeks ago on wed actuallyat the CT scan, I started refluxing on the prep turned out to be citrus! Who gives someone with reflux citrus prep? Vomited and was told to stop taking it but clearly damage was done.

      Just not sure if these circles are GERD or damage gastritis or what. Can't find anyone who can't eat. Others say oh yeh i feel full but they can eat which is not the same although close.

    • anastasia51692
      anastasia51692 Torialouise

      Posted

      Hi toria are you in the uk? You should not have to wait this long for an appointment as you sound like a severe case for you to not be able to eat!! Make sure you push to get tests done to check what's going on down there. I was really panicky about doing the endoscopy as I wasn't able to breathe normally anyway but you have professionals monitoring you - you will be fine.
    • maryam324
      maryam324 anastasia51692

      Posted

      Hi anastasia, you mentioned dropping acid.how do you if its too much acid or less acid in your stomach have you ever tested. And I am on the Candida diet myself for a week even thought I cheat I am feeling much better. But would love to test if its access acid or less acid
    • Torialouise
      Torialouise anastasia51692

      Posted

      I have failed 5 of them hun I can't do them. They sedated me, throat sprayed me but nope not once did it get down. We can't do any more I can't even get to the room now without a panic attack. Begged to be put to sleep but they refused. that was a year ago nearly. I am hoping I can go private but do not want gastro to refuse to see me after, i rushed a scan elsewhere going private for neuro and they refused me any further treatment. Insanity or what
    • anastasia51692
      anastasia51692 Torialouise

      Posted

      They refused you?? That IS insane!! They are not allowed to do that. I have done some private tests and they haven't refused me (yet??). You are entitled to get treatment. Why can't they realise that you are really struggling with this and to just put you to sleep?? There must be a way...
  • susiecooper16
    susiecooper16 Torialouise

    Posted

    Helo Toria - I am so sorry to hear of your predicament. Your symptoms and medical history suggest that you need to urgently be checked out for Barretts Oesophagus. I don;t want to scare you but it can be, in rare cases, serious. The main thing is to get a diagnosis and this will involve an endoscopy and biopsy. Don't let your GP fob you off - push to get this tested. Very best wishes.
    • Torialouise
      Torialouise susiecooper16

      Posted

      Thanks hun, i know all this but gastro dnt seem concerned no ones in any rush at all. Aside me living it! Gps not fobbed me they are out of ideas, they sent me 3 endoscopies 1 of which I tried twice to get it down but couldnt. They have given me all the meds above, spoken to partners sent mr to dietitcians, gastro nurses and gastro. But getting no answers anywhere :0(
  • irene71854
    irene71854 Torialouise

    Posted

    Hello! I'm not sure how to say this but. Is anyone feeling like going crazy. And my heart started palpatation even though I'm dreaming when I wake up my heart beats fast like it won't stop. Is anyone feel the acid reflux like feeling going through your head heart back stomach I dunno what to do. and I'm scared.
  • irene71854
    irene71854 Torialouise

    Posted

    You should eat. I have the same problems and I'm scared too. But all I do is pray to God I'm scated cAuse I can feel my heart beating fast cause of acid reflux and I don't understand my stomach its noise and always hungry and if you have acid reflux hard to sleep hard to focus hard everything that's why I went to my cardiologist to check my heart that was only yesterday and said it was fine if I were you go to the doctor
    • 1diamond_owl
      1diamond_owl irene71854

      Posted

      Hello! Do you ever feel like tightness in the stomach up to chest area?I also feel that cause I suffer from insomnia so all I do is stay up late which of course wworsens the acid.I don't know what to do anymore and it's true sometimes I feel like I'm losing my marbles.Hope we all feel well soon.
    • irene71854
      irene71854 1diamond_owl

      Posted

      You should go to the doctor. My cardiologist give me a medecine for my acid, I suffer palpatation I suffer acid reflux which is very hard and I'm going crazy thinking too much. I also sleep in my stomach cause I can't sleep well if I sleep on my back I do feel how you feel. But you should go to the doctor if I were you.
    • 1diamond_owl
      1diamond_owl irene71854

      Posted

      Thanks been to the GP on several occasions. I feel like  a fool, it appears  to me that I'm imagining my symptoms all the results were normal,though.Bloodworks, I mean. Then there was one occasion when my acidity was so worse that I can't find a comfortable position to sleep, if i lie down on my right side the pain was so intense, on my left side same thing.I have a high tolerance for pain, so I don't remember how I manage to sleep that particular night. I am thankful for this site cause I can tell that I have similar symptoms with people here.Last night alone, I felt tightness of acidity it's the type of pain that will only be healed by burping.I became very anxious,so, my Globus Sensation worsens every now and then. I drank ginger with hot water last night,and the Globus was not that intense this morning. I am considering TCM traditional chinese medicine and accupuncture.Have a good day.cheerio.smile

       

    • irene71854
      irene71854 1diamond_owl

      Posted

      And I'm telling you. You should eat at day time and night time 3 times a day.. And water more water. You should eat morning lunch and dinner don't missed it ok? Our acidic don't care to our body they're going to destroy our body and made it to ulcer. That's why even though I don't feel eatting in the morning I have to force myself to eat. You should eat oatmeal that's helps me a lot.what I felt the last days I feel worse can't sleep and much pressure my god.
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