Long lasting flare ups scared

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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?

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  • Posted

    Dearest Torialouise,

    You are not alone, although your symptoms are severe and more complicated than mine.... I have some similarity and this is what i am doing... I have had the medication overdosing/rebounding and intolerance for food. I too wound up only drinking Water with electrolytes and the nutrition drinks. I lost weight and became so weak and dizzy and was so exhausted but could never sleep because even on an incline the abdominal/chest pressure and burning was suffocating. Heart palps so i thought i was having a heart attack. My ears burned so bad i would run qtips under cold water and stick them in my ears to soothe it. Ears have been ringing too the whole time. Always coughing with chest and throat feeling like i am choking for air, like i would imagine an asthma attack... But with a full throat and sinuses. And the back pain between the shoulder blades and neck pain. I have been 9 weeks waiting on an appt with a gastro specialist which is finally this afternoon. Seen 6 others Docs and had a ton of nondefinative tests to get here, i have truly felt i am dying. So i stopped. I am not a doctor and i am not advising you, but just sharing what i have done the past couple weeks that is helping me. I cannot attest to its wisdom, but for me it is working. I stopped trying to eat. I drank electrolyte water only for 24 hours. I stopped all meds except an otc calcium carbonate for when i felt breathing emergencies. I was not on any meds that you cant just stop and i even checked that with the pharmacist and poison control. I did not lay down or recline for 3 days. To sleep I sat up boltright in a comfortable chair wedged in by pillows and blankets and U shaped neck support pillow for my head. After 24 hours of water... Tons of water... I drank nonstop. Then i introduced aloe vera juice, then coconut milk and coconut water, then chamomielle tea and raw honey, then simple whole foods like cantaloupe, boiled chicken and potato, and plain oatmeal. I am now gluten and dairy free as well. I eat amall bites, chew completely and only eat standing up and remain standing 40 min at least after eating. I eat few bites every hour. I chew gum to help salivation to coat stomach too naturally when i am not eating. And i drink water all the time, sipping constantly. First few days was miserable. I cried most of it. But couple weeks in now and i am improved. Not cured. But i have not had the breathing attacks in 4 days, the burning is there but tolerable, but i am tolerating the food. Havent thrown up in several days. I have added fresh beans and broccoli and a probiotic. I still have flares and take the otc calcium carbonate and then walk it off. It takes me 30-40 minutes to feel some relief, but im managing it. We need to eat, breathe, and move. Find your way to be able to eat. Healing myself has become my life now, it is what i do. But better than getting worse. I do believe if i had not done something i might not still be here. It will be a long walk but i feel i am on the right path for me. There are no quick fixes, no magic pill for me. It took most of us a lifetime to get here i suspect so healing will take time too. I am still hopeful for a definitive diagnosis and treatment plan from this specialist but i have my plan B in case of another dead end there. I wish you wellness and do know you are not alone.

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    • Posted

      I'm inspired I have the same situation my god I am feeling unwell right now my ear feels hurt and burning and feeling like my heart is beating fast. And I'm scared and I tried to eat too. I drink a lot of water eat take medication. I know I am not alone to feel this
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    • Posted

      Bless you! Glad your finding some relief sadly my other health problems get in the way too I think. i can't stand or walk far, I am 100% sure it does not help. I have been waiting an average of 5-8 months between appts with them here the department is just snowed under.

      Really down had as much as i can take spent hours ringing hosptal today tried several people no one could help got told to go to my GP thanks for that went WED :0( don't know what to do

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  • Posted

    Have you been tested for lactose or gluten intolerance?

    I would take Milk Thistle tablets while you wait for any further investigations. They worked a treat for my stomach and throat problems. Good luck.

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  • Posted

    hi, l can relate to some of your symptoms, also jodie,s, guess everyone,s in some ways. l started with bouts of nausea 2yr ago, virtually all day for weeks, lost my appetite, lived off tea and toast, tried chemist stuff, didnt help, but would settle for weeks, then started continuously in october, l,d felt full and bloated easily for long time, now that was worse along with frequent burping, bouts of breathlessness, the throat ache and burning tongue, general fatigue that goes with it, just unwell most of time and used will power and auto pilot to get  me through the days, doing jobs l needed to as essential, pet care a big motivation to get up and face the day, exertion or sustained movement for more then l0min, made me worse, l,d also get  astham type attacks tinnitus, felt a wreck.  G.p, tried anti nausea stuff, no help, On the more settling days, usually later in day l would have a small plain snack tea time, little chicken  or fish, half slice bread, sometimes a portion of mash, egg,  yogurt bio,  l lost about stone in weight, and got referral to gastro ent, he did scope and scan, diagnosed a bit of gastritus, prescribed omprazole, l,d been taking cimetidine prior for acid reflux diagnosed years ago, also hbp bendro, prozac, maybe more significantly one kefalexin a day as preventative agianst intersticial cystitus flare ups, as prescribed by urologists, also supplaments, vits mins, ginger,herbal teas ginger peppermint. After 3 wks on omprazole still same symptoms, l also decided against taking any more, along with other meds, just kept essentials to minimum, l spoke to gastroenterologist about it, he seemed ok about it, be it he,d prescribed the omprazole, which some people are helped with, weve got to try find whats right for us, l felt l,d had so many meds, particularly long term anti bs that it had caused or aggrevated it, thought l couldnt feel any worse without them.

    l have felt a bit better last couple of weeks, not great, still prone to bouts of upset tum, still little appetite, but manage a small plain evening meal, and on good days a small snack lunch time. They were suggesting anti emetics, but l,m  not  trying anything new in meds just yet, it might just be a spontaneous settling a bit, or could be reducing meds, time will tell, l also knew my diet or lack of food was very bad, in few vits, mins, proteins, although the weight loss is a problem, for me it wasnt as bad being l was 3 stone oweight before, but then noticed my finger nails were splitting, and never got so short before, to extent of being sore inflamed,  At present it slow changes, with a little improvement, bit more active with it, such a rrelief up to previous existence. lve tried some of reccomends on site, some help some dont, but keep trying and accept it takes time.  l think you can ask your gp to refer you to different specialist, second opinion, and you shouldnt have to wait 6-9month between appt, but l know there are more probs generally, could you ask to speak to practise manager, advice, re state of your body an lifestyle, complaint,

    Hope you find help with it soon.  

     

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  • Posted

    Hi, the acid reflux wet usually minor for me it would flare up for about a week or so and go away. Well I recently divorced, lost job; and with the regular stresses it has flared up and not went away for for 3 months have lost so much weight... My stomach have been on fire Morning, Noon, NIGHT, and In The Middle Of The Night. I understand and I didn't know it could get this bad... So the high stress triggered the acid reflux, now it seem like it won't go away. Take only about 60-100mg a day of Prilosec and Mylanta... Oh Brother... Pray the best for you

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  • Posted

    I have heard so many good things about herbalists and homeopathic drs. Do you think maybe trying tht may help? I also have acid. My throat feels so tight like a choking sensation no matter what I eat. Iv had CT scan, an ultra sound and next week going for a scope down my throat. If it's all acid, I am planning on going to a homeopathic dr. Will let all know if it helps. Be blessed and be healed..in Jesus name..

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