Long lasting flare ups scared
Posted , 13 users are following.
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
jodie77731 Torialouise
Posted
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.
anastasia51692 jodie77731
Posted
irene71854 jodie77731
Posted
Torialouise jodie77731
Posted
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
irene71854 Torialouise
Posted
gillian06472 Torialouise
Posted
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.
lynne69494 Torialouise
Posted
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.
Netta1979 Torialouise
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
terrie27149 Torialouise
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..