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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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  • ellag24
    ellag24 Halp

    Posted

    hello!! i’m 17 years old and i’ve been having nausea for around 8 years now. i’ve been on many different doses of  lansoprazole which amounted to nothing. my doctor seems to be very dismissive of my symptoms (nausea, lump in throat, sore throat, not wanting to eat, fear of being sick like you, fatigue, muscle ache, brain fog, headaches) and still nothing has been done. i even had a stint on anti depressants which also did nothing. I know this isn’t in my head but that’s all i’m being told. most days i can’t eat or i have to take something like a gravol just to keep my food down.  i’ve had multiple ultrasounds, blood testing, stomach bacteria testing and they’ve all resulted in nothing, i recently found out i had low blood pressure and some of my blood tests had weird calcium levels but my doctor just believes that i’m “willing it to happen” to myself!!!! i would never wish this on anyone let alone myself to keep feeling this way and i’m so frustrated that no one will help me!! is there any thing that has resulted in help for you?  
    • Halp
      Halp ellag24

      Posted

      Oh my gosh, you’ve got exactly the same symptoms as me!!

      Mine started when I was around 10 years old too as I’ve lived with it for nearly 20 years now which is depressing! I get the brain fog, nausea, exhaustion thing as well. When my nausea is really really bad I can’t even think properly and sometimes I get quite a bad upset stomach with it too, particularly when I’m feeling anxious about feeling unwell! 

      I also feel the same way that it’s definitely not in my head cause if it was in my head it would be ALL the time, it wouldn’t just switch on and off and vary in how sick I felt/how bad the flare ups were. A couple weeks ago I had great energy, felt really well and almost normal and this week I’m back to being exhausted, my throat feels off and I feel generally really sick and unwell but I have no idea what changed. It’s like a full on immune response when I get really sick, sometimes my glands go up and I’ve started to notice I get a weird spider vein thing across my ribs. 

      It sounds like you need a new doctor though if he’s saying you’re willing it to happen to yourself! That’s terrible! How can you will your blood pressure to be low??

      Unfortunately I wish I could offer you some advice but I haven’t found anything that helps my flare ups yet sad I just try to rest as much as possible and drink looooooads to try and flush out my system. I also reduce trigger foods and try to eat plainly. If I’m really bad I just don’t eat at all til lunchtime or later which sometimes helps. 

      Let me know if you find any solutions smile

  • helen30739
    helen30739 Halp

    Posted

    Hello 

    Sorry you are feeling like this it really is a terrible feeling. I have had it for nearly five years on and off and had most of the tests they do for this problem. Nothing abnormal was found but I still worry a lot about it. Lanzoprozole did not agree with me so I cant take that. I am on anti sickness tabs and Ranitidine which does help. I was due to have my Gall Bladder out but a recent scan shows I have a Fatty Liver so have too lose 2 stone in weight before I go back in October to find out if they will operate. My Drs keep saying if it was a serious  symptom of something it would not last this long and I would have developed an illness by now? I have now been referred for therapy and I am seeing a Hypnotherapist as I will now try anything to get rid of this terrible nausea. When I have it I am unable to function and it makes life very difficult. I work but some days it is very hard to carry on normally

    Where are you I am guessing the US? 

    Let me know how you get on, it is a condition that not many people understand

    My best wishes to you 

    W

    • Halp
      Halp helen30739

      Posted

      Hi,

      It really is awful feeling like this all the time, I’m sorry to hear you are suffering too! It’s nice to have this forum though and realise there are a few other people feeling the same way so we’re not alone! Lanzaprasole didn’t work for me either, and sadly neither did ranitidine. I use ondasetron which is the only thing that works, but if you take too much of it you end up with horrible bloating!

      Nothing abnormal has been found for me either other than having a hiatus hernia and inflamed stomach lining but there has been no suggestion on how to go about rectifying either.

      Yes my doctors have said the same thing! It’s comforting to know it’s not serious but on the other hand it’s absolutely miserable feeling sick every day and not being taken seriously because it’s not serious sad or worse being told it’s in my head!!!

      Let me know how you get on with hypnotherapy as this is something I’m debating! I’ve also been told to consider acupuncture but I’m not so sure!

      I know how you feel though, it’s very exhausting trying to carry on normally and work when you feel awful.

      Please do let me know how you get on with the hypnotherapy and the surgery though. I hope you feel better soon!

    • Halp
      Halp

      Posted

      Meant to say, I’m also based in the UK smile
    • anne53212
      anne53212 Halp

      Posted

      an inflamed stomach lining is gastritis and the main symptom is nausea. i think you have your answer as to the cause of your symptoms! why is your doctor not trying to cure the gastritis with medication?

  • Tiffany188887
    Tiffany188887 Halp

    Posted

    Just a thought but have you all considered allergy testing for food intolerances?? It really helped my sister.
    • Halp
      Halp Tiffany188887

      Posted

      Hi,

      Are you based in the UK? Can you get your sister to tell you how she was tested??

      I’ve no idea how to go about that as a lot of people who test for intolerances are con-artists sad 

      Allergy testing is the only scientifically proven way as it’s through skin testing etc. I’ve seen people using some odd methods of testing! 

      Any info would be appreciated smile

      Thanks

    • Tiffany188887
      Tiffany188887 Halp

      Posted

      My sister went to a naturopath/ functional doctor. They did a blood test to check her antibodies to food. Her test came back with a severe intolerance to milk ( even though her lactose intolerance test was negative) since she has cut out mills she is doing much better. She would feel sick, sometimes vomit and bad tummy aches. So for her it really helped😊

    • Tiffany188887
      Tiffany188887

      Posted

      Is nausea your only symptom? Are you dizzy or fatigued? If so have you considered POTS it has to do with low blood pressure or chronic fatigue syndrome? Hoping you find an answer soon ❤
    • Halp
      Halp Tiffany188887

      Posted

      Hello,

      Thanks so much for the above info! I’m not sure where I would find a functional doctor in the UK but definitely something to look into!! smile thank you.

      No my symptom list is quite extensive sadly, nausea is the main one but I get horribly exhausted with it, brain fog, headaches, dizziness, loss of appetite if it’s really bad, sometimes an upset stomach and cramps too but not as often as the general feeling of unwell/nausea. If it’s a prolonged bad spell I’ve noticed my skin starts looking quite bad, like dry and patchy, so I’m assuming my body is using it’s resources elsewhere so my skin takes a hit! It just feels like an all out immune response.

      It’s never been suggested to me that it may be POTS, I do have an fast heart rate however but it’s still in the “safe zone”, something else to look into though, thank you smile 

    • Tiffany188887
      Tiffany188887 Halp

      Posted

      Have you seen an internist? Perhaps there is something going on like an autoimmune? Or go to the naturopath/functional doctor get an allergy test/intolerance test, SIBO (small intestinal bacteria over growth) test and an OAT (Organic acids test) it can show if something is out of whack https://www.greatplainslaboratory.com/organic-acids-test/  that will explain it better than me. Leaky gut can also cause some issues ( again a naturopath can help you with that) Also what acupuncture I have heard really good things especially if the nausea is cause due to a nerve issue.

      Have you had a HIDA scan done to see if the gallbladder is working properly? They can't tell that on an ultrasound.

       

      Id definitely see a naturopath they seem to understand the complexity of the body more than a medical doctor. Especially considering how many meds you have been on I would definitely see one of them. Also the an acupuncturist (may take a few treatments)

      My friend had a celiac test which was negative, but was still sick all the time. Then she had an intolerance test done and sure enough she could not eat wheat, even though the gastro doc told her it was fine because she tested negative for celiac. Celiac disease is an autoimmune disease where gluten destroys the microvilli in your gut, then you cannot absorb nutrients properly. HOWEVER you can still have an intolerance to gluten, wheat etc but it does not damage the microvilli which means technically your are not celiac. 

      Hopefully some of this helps smile 

  • david67394
    david67394 Halp

    Posted

    I feel bad and have had nausea for a long time. If I want to fell good completely good I  take a Travel Tab  and   a

    hydromorphine no. 4 and I will get 12 hours no nausea. They can be purchased in no. 2 strength but if you buy t

    no. 4 and they are made to break in two they are much cheaper. they worked so good for me I went back to the

    drugstore and ask them if they were hard on me and she said would I believe less than taking Aleve or anyof the cheaper pills Dave

  • mmorse972
    mmorse972 Halp

    Edited

    Have you looked into postural orthostatic tachycardia syndrome? It’s quite common, encompasses much of the symptoms you and Cheryl have described, and often goes undiagnosed. Good luck!

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