Acid reflux, pain, nausea; worried about zollinger-ellison

[Smiekie_t]

Hi everyone! I'm new to this group and looking for some people with the same experience.

I'm really hoping my symptoms boil down to anxiety, but I'm starting to worry (how ironic) that it's more serious. Last year I had a strange case of leftsided numbness for months. MRI showed nothing and after this the symptoms disappeared. Conclusion: anxiety.

I was fine for 6 months when I started having bad heartburn and ulcer-like pain in my left upper stomach. Not related to anything I eat, it's there 24/7. Dr put me on pantoprazol, which works, but every time I try to come off the symptoms return.

I've had these tests:

- h pylori: negative

- ultrasound: clear

- MRI (private): negative

- endoscopy: all clear

- 24h pH monitoring: no results yet

On the one hand I'm happy they haven't found anything wrong. On the other I feel like I need some more tests to exclude anything scary. If it were functional heartburn or dyspepsia, why does the ppi work so well? That's why I'm worried it is something like zollinger-ellison (net cancer) and they just haven't found it yet. I started taking pantoprazole again but it's not working now. Can hardly sleep from the pain and nausea. Anyone out there with persistent heartburn and ulcer-like pain and it turned out to be anxiety? Thanks!

[AMerchant]

The problem i have coming off ppi is acid rebound effect

Did you test h pylori when on ppi? I did this and it came back false negative but when I somehow managed to stop it for the endoscopy the biopsy returned positive

[Smiekie_t in reply to AMerchant]

I tested for h pylori before I went on PPIs, so I'm quite positive I don't have it. I wish it were that "simple".

[AMerchant in reply to Smiekie_t]

At least you know you don't have h pylori. I have to yet to find out if mine has gone but because of the symptoms I can't come off omeprazole for 2 weeks to do another stool test

[Bellaowl]

I have 1 off the wall suggestion that might help and may get u on the road to a diagnosis.

Could u have migraine with involvement of the vagus nerve. I have this.

If so a simple way to find out without doing any harm could be to take 100mg of riboflavin- vitamin B2.

It’s what is recommended by the neurology hosp in Queens Sq.

Ask your doctor what he thinks of the idea.

I hope u find a solution soon

[AMerchant]

Hi. I have my ultrasound tomorrow. Did you get the results of your ultrasound on the same day?

Also how was your 24hr pH monitoring test.

[Smiekie_t in reply to AMerchant]

No I got it the next week. I live in the Netherlands though, so perhaps it works differently here. The results of my 24h esophagus pH test were non-specific. In other words : I don't have reflux or Gerd. The only thing I'm worried about is that they told me to stop ppi 5 days before the test, and tbh I didn't have many symptoms at all before or during the test. Two days later I started getting symptoms again. The Dr said 5 days is definitely enough though, so I shouldn't doubt the results. I feel like such a hypochondriac. He's basically told me it's all in my head, but it's so difficult to accept when you're in pain 24/7.

[AMerchant in reply to Smiekie_t]

Same here. My doctor also says I have non ulcer dyspepsia which means there is nothing wrong but I am experiencing symptoms because of stress.

[Smiekie_t in reply to AMerchant]

How did your ultrasound go? I was also wondering: did you have your endoscopy before or after taking ppi? I'm now worried that having an endoscopy after taking PPIs for three months perhaps masked anything scary.

[basten in reply to Smiekie_t]

Seen 5 gis. Tests. I had weird symptoms all led to pain all in back eating. I do have bile gadtritis oesophagitis hernia but had burning when went for scan and EUS. Nothing. One said its nerve endings. Another said and wrote i Am to stop trying to find answers and noone should see me anymore and referred me to psychotherapist. 6 yrs on and the pain gets so bad . Now theres something else happening never had before on eating. I think drugs ive been on have caused issues but as i cant see anyone and Julys scope just showed what i Alresdy had but now worse i kerp thinking its pancreas or big c somewhere now. I just want to know. I waiting a bravo and manometary 5 months now and mNaged to get gp to refer me but of course this gi wanted records and atraight away said this lasy has seen numerous gastros in past and i suspect its functional but ill do the tests. It gets soooo tight arkund chest on esting and worse lying down. It would go away by a.m. but lately still tight waking up. Hurts to breath in. Doc tried stomach emotying tabket but it xaused issues with my bight meds. Another Buscopan nope didnt work. I suffer anxiety and one said i think your just depressed. Over the yesrs ive cried buckets and to no avail. A lot happened when i stopped some meds too quick and a benzo

[AMerchant]

Hi. My ultrasound went well. No issues with liver, kidneys or gallbladder but they couldn't see the pancreas so will need to have a CT scan for this.

I had to stop omeprazole for 12 days before the endoscopy which I somehow managed in October. I was also on omeprazole for 3.5 months prior to that. So if you stop for 2 weeks it shouldn't affect your results hopefully

[Smiekie_t in reply to AMerchant]

That's good news at least. Will you get a CT scan soon? I'm having a terrible time off the ppi. It's now been almost 3 weeks without. My heartburn seems to have lessened, but the stomach pains are almost unbearable.

[AMerchant]

Not sure about the CT scan.

Have you lost any weight? I have lost around 10kg

[Natalie1982]

Hi guys im awaiting my h pylori results as ive had reflux/indigestion type symptoms. They started in Dec 2020 but after talking prescribed Lansoprazole they went. Had a panic attack 3 weeks ago and just prior to that they came back again. Been advised to take Gaviscon and the main issue for the last 2 weeks has been my throat. Originally it was the lump type feeling which went after taking meds. Its back again but worse, its uncomfortable to swallow sometimes which is worrying me. I can eat fine, and im not choking or anything it just feels like tension almost. I was wondering if this was all anxiety related but was just taking time to go. 🤦‍♀️

[Acidaccount77]

I don't know if this will help at all - I have acid reflux only at night ( but have wondered if there is silent symptoms in the day ) - however I take only Gaviscon tables at night when laying down ( positional seems to be the trigger for me) - Like you I have had ultra sound and endoscopy but nothing found - ( you sound to have had far more tests !) I have tried to see if some foods could trigger the pain I feel and find that tomatoes and chilli and some bread - maybe the focaccia types with rosemary and sea salt maybe its the oil in that - I would suggest you keep a diary to see if there are food intolerances you may do better than me at spotting something, ( I agree stress is another trigger) -

Someone once told me that being too raised up on pillows might affect the sphincters and may make it worse - but laying on the left side and being raised is better for me for a while - I have wondered if mine is aging sphincters and weight gain in the tummy area - I am tall and not overweight in the obvious but weight loss would definitely help me and my arthritis that I have in the hip so I am working on this.

The pain I have is not like obvious acid its like discomfort in the stomach and maybe heat - but the Gaviscon tablets help immediately - just one seems to affect the smooth muscle and I can sleep soundly - there are some mornings where I feel a tiny bit of nausea and I think this may be partly due to not drinking enough - often dehydrated tea is apparently very drying I am quite bad at drinking water.

I was not able to tolerate the PPI medication however I don't like to use medication so avoid it and didn't give it time when I reacted with stomach ache I quit it - Lansoprazole made me very ill and it killed all the good bacteria in my gut and I had a severe reaction and enteritis so I didn't return to using that.

Even with my arthritis I use only two paracetamol as an when and I get used to the pain because long ago when my osteoarthritis began in my hip I used to take Ibuprophen and I believe I may have damaged my stomach with this so no longer take it even though I could tolerate that.

Everyone is different for this condition possibly also why some psychological factors seem to weave their way in.

I wish you good luck with getting to the bottom of yours.

[Jen221]

Can be aggravated by Anxiety .