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Chronic nausea for 15 years, still no answers!

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Halp
Halp

Hi all.

I'm posting this in the hope that someone can relate and offer some sort of help or advice as this has gone on far too long!

I'm a 25 year old female and I've had spells of almost constant nausea since I was around 10 years old. When I was younger it got to the point where I would just not eat (not helpful!) for fear of being sick, as I've grown up I've almost accepted that feeling sick is a part of my life now and I try to carry on/eat as normal unless I have a particularly bad "flare up". However I really shouldn't have to live like this!

When I first complained of it my parents took me to the doctors numerous times and at a very young age, after complaining the nauseous feeling was at the back of my throat, I was told I had reflux and given lansaprozole. When it didn't work whatsoever my dose was doubled until my mother actually complained that I was being given such a high dosage at a young age!

After this I just tried to put up with it. My final year at high school I was mostly off school feeling unwell! I struggled through but by the time I got to university I was fed up. I went back to the docs and this time was diagnosed with IBS and prescribed mebeverine. The most this did for me was reduce the gas and bloating that came with my upset stomachs but after a month of taking it it actually gave me nausea EVERY single day til I stopped it!

In recent years after finally realising how much this has been ruling my life, along with realising how bad my symptoms can get - nausea, upset stomach, dizziness, fatigue, headaches etc and sometimes feeling sick to the point of thinking I'm going to be physically sick, only to burp! I've finally gone to the docs several more times.

I've tried domperidone which helped a little but I was eventually taken off it as I still felt unwell, I tried omeprazole (mostly to please docs as they still insist its reflux) and was recently given erythromycin which I never took after a consultant was horrified I'd been prescribed it in the first place.

I've had a endoscopy which revealed I have a hiatus hernia (my dad has one too so must be hereditary) however I very very rarely get heartburn or any kind of reflux and my symptoms are not related! It also revealed an inflamed stomach lining but nothing else. I've also had a stomach emptying test which came back normal, I've been tested for helicobacter pylori NUMEROUS times over the 15 years and most recently I've had an ultrasound scan of my liver and gallbladder. I was referred to a consultant in the past few months who believes my symptoms are not stomach related, hence liver etc tests! I'm still awaiting blood tests but no word yet. Im meant to get referred to a G.I but again no word yet.

The most recent tests have been over a span of one year so it's a terribly slow process! I have infact just been told my next appointment with the consult is 7 months from now which is frankly ridiculous. Hence I've come here!

I would greatly appreciate any help with this as its starting to take over my life! I've had years with no nausea at all but this has been over a year now with almost constant nausea. I've also been tested for celiac disease which came back negative, I've bizarrely never had stools tested despite upset stomachs and I've tried a lacto-free diet for two weeks which made no difference! I additionally tried to eat 100% healthily/no processed foods etc for two weeks which equally made no difference, still chronic nausea and fatigue!

Any suggestions on what this could be would be massively appreciated!

6 likes, 109 replies

109 Replies

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  • ashley67723
    ashley67723 Halp

    Posted

    Have you been tested for celiac disease? Sounds just like what I have. My nausea is coming back now but not sure why. Ha e you tried gluten free? At least look up celiac online. It's a really good possibility!

    • Halp
      Halp ashley67723

      Posted

      Hi,

      I’ve been tested for it about 3 times and it’s always come back negative so definitely not that sad

      Thank you though!

  • Poshjosh99
    Poshjosh99 Halp

    Posted

    Hi! I’ve created an account  just to reply. I had terrible nausea start all of a sudden a year ago and I couldn’t eat anything for a few days! I’ve now got continuous nausea and some days cant eat anything at all. I’ve also got terrible emetophobia, so bad I limit my time outdoors. I’ve had blood tests, H.Pylori tests and everything. Everything is absolutely normal. I have a cruise in a few months and I’m honestly terrified because I now hate eating in front of people! 
    • Halp
      Halp Poshjosh99

      Posted

      Hi!

      I know EXACTLY how you feel, some days my nausea is so bad I really can’t eat. I also have emetephobia, it’s like the worst thing to feel nauseous all the time but be terrified of being sick 😞 I’m having a bad day today infact! Felt sort of ok all week (for the first time in ages!) and woke up today feeling really rough.

      For the emetephobia it definitely can get better though! Try getting a book called “Cure your emetephobia and thrive”, it’s quite expensive but really worth it. I have to go to really scary meetings a lot in my job and for months I was terrified of feeling/being sick in them (although I never am sick!!) and kept having panic attacks. Just a couple of months ago though I had a meeting and I was ABSOLUTELY FINE, I attribute a lot of that to coming to terms with having emetephobia and knowing I’ll be fine (as much as it often doesn’t seem like it). I still have bad spells but not anywhere near as bad as I was! I’m slowly getting there!

      For your stomach though I’d push your doctors as much as you can and get every test you can. I take it you’ve had a celiac test? I’ve had the helicobacter test about a thousand times so I know how you feel there!

      Maybe see if you can get an endoscopy? I’ve had that and they discovered I have a hiatus hernia but it’s not serious enough to operate, absolute pain.

      I’ve also had a stomach emptying test and an MRI which came back fine but definitely worth trying everything!

      If it came on so suddenly though and hasn’t subsided maybe it’s a bacterial thing? It’s not unheard of for it to last years (bizarrely I’ve still never been tested for it!)

      See if you can get your doc to give you more tests though, there’s no reason you should have to feel horrible everyday. I’ve been prescribed ondansetron and whilst not ideal if I’m having a REALLY bad day it makes me feel so much better.

      Good luck!! smile 

  • MissBizy
    MissBizy Halp

    Posted

    Cyclic Vomitting Syndrome.

    Look into it. Not uncommon for people with hiatal hernias. I'm 28, was born with a hiatal hernia, and I suffer from cyclic vomiting syndrome, along with 7 ulcers (2 stomach, 5 esophogeal), and acid reflux.

    (I also have fibro, anxiety, and RLS)

    • Halp
      Halp MissBizy

      Posted

      Hi,

      I very very rarely vomit so I don’t think it’s it is this unless it’s similar but without the vomiting? 

      I’ve been tested for ulcers but I’ve only come back positive on the hiatus hernia, I’m beginning to wonder if I need surgery. Has this been given as an option to you?

    • MissBizy
      MissBizy Halp

      Posted

      Surgery has been offered to me as well, but previously I was located in an area where surgery wasn't an option... we had one gastrointestinal specialist that flew in once every six months from another state.

      Cyclic Vomiting Syndrome doesn't necessarily cause vomiting, it's just a name. Its characterized by lethargy, spontaneous nausea. Its actually thought to be a migraine disorder but is common with hiatal hernia patients.

      Hope this helps. I just manage my symptoms with peppermint oil and ginger, honestly.

    • Halp
      Halp MissBizy

      Posted

      I used to see a gastroenterologist as well, but since moving from Scotland to England my doctor has so far not referred me to a specialist citing that “it’s probably just the way things are”, not helpful. 

      Interesting! This has never been suggested to me, only it being called a “functional disorder” or “chronic idiopathic nausea”, I think I just really need to get on at my doctor to get referred back to a specialist.

      I’m glad you’ve found something to help manage your symptoms smile even after struggling with it for so long I still haven’t found any solutions when it’s really bad! 

    • MissBizy
      MissBizy Halp

      Posted

      It's not a cure-all or anything, just lessens the nausea a bit. I definitely still have a difficult time functioning normally. Keep a rubbing alcohol pad on you too... the smell of isopropyl alcohol can help quell nausea.

    • Halp
      Halp MissBizy

      Posted

      Better than nothing I guess. The only thing that works for me at the moment is prescription medicine!

      I’ve never heard that one before, thanks smile 

  • adrienne37776
    adrienne37776 Halp

    Posted

    I have had constant nausea for four months with soft bowel movements.The nausea is constant with daily dry heaves.They did blood work it was perfect ,an endoscopy of my stomach it is perfect,cat scan on intestine gall blabber again perfect colonoscopy all good.I am still so sick to my stomach I struggle to work.now they ar doing a MRI on my brain.What is going on with me?
    • Halp
      Halp adrienne37776

      Posted

      Hi,

      I totally know how you feel! It’s exhausting! Especially when you have to try and get on with normal life and go to work etc when you just feel like throwing up all the time sad 

      I’m assuming you’ve been tested for helicobacter pylori and other stomach bugs? 

      I hope you’re feeling better soon!!

  • david67394
    david67394 Halp

    Posted

    Hello I hope I can help you I had every test for years with no luck, three weeks ago I cut out all dairy products just

    to try anything, I must have been Lactose intolerant , m nausea went away the next day, no one knows what it is

    to have nausea every day I often use to wonder if it was worth going on , I pray you can be as lucky as I was.

    • Halp
      Halp david67394

      Posted

      Hi David,

      I have unfortunately tried going lacto free for two weeks and it didn’t help sad 

      I tried FODMAP recently as well which cut out all lactose, gluten etc but I ended up with really bad stomach cramps and had to go back to eating normally.

      Did you cut out all dairy or just lactose? Maybe I need to cut out dairy rather than just lactose as I’m currently using lacto free milk which is still dairy?

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