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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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  • addie1617
    addie1617 Halp

    Posted

    Ive never read something that relates so close to what I went through. I had some odd stomach problems even as a young girl but they really took off at around 10 years old. I had a scope done and they didn't find anything other than some supposed reflux damage. They put my on prilosec but my mom didn't let me take it after we realized it wasn't helping my symptoms and its not good for a 10 year old to be on it long term. I went on a very restricted gluten dairy and soy free diet but it really didn't help much. My reflux and nausea were horrendous for that year but then by the time I was 12/13 they subsided a little. However, the years if not feeling good caused me sort of a horrible anxiety problem and the second I went into high School at 14, they came back worse than ever. Im not sure if it was anxiety or what, but I started having attacks that would cause me to pace around my kitchen all night long because it made me feel too sick to sit down. I would get a horrible discomfort/ tightness sensation in my throat and mouth that made me feel as if I am going to throw up for hours and hours on end. It would keep me up all night long and id go to school on no sleep, It was to the point where I was missing so much school I had to do online school by the time I was 15. By the next year I decided I was gonna go no matter what because I hated not being in school with my friends, and the attacks did get better by the time I was 16. However I then started having significant issues with dizziness fatigue and just feeling like I have the flu overall. It was brushed off as overworking myself with dance team and school and all that, but by the time I went into the doctor the next year they discovered I had severe iron deficiency. It was corrected with infusions because pills did not work, and once my iron went up I did feel better and not so horribly fatigued. my levels then fell again shortly after, and at 10 months after my treatments were almost back down to what they were before I had them done. This was concerning because it should not have fell for many years, and definitely not in 10 months. They believe I have an absorption problem, because of my lifelong stomach problems. When I was 17 I was diagnosed with SIBO but never actually took the antibtiotics needed to kill the bacterial overgrowth off because it can really knock you out for weeks and my life was super busy, but I think I am going to take them to hopefully get rid of the sibo once and for all, switch to a gluten dairy free diet permenantly, and hopefully better retain the iron and other vitamins I eat.  moral of the story-it may be worth getting checked for vitamin/mineral deficiencies that could be causing the fatigue. Its very possible you have too much bad bacteria or damage to your gut that could be making it difficult for your body to absorb nutrients making you fatigued. As far as diet, it will take more than 2 weeks to undo the years of damage. I would advise staying on a very Whole Foods natural diet low in dairy and sugars. Best of luck to you and god bless

    • Halp
      Halp addie1617

      Posted

      A very delayed reply from me but I hope you're feeling better now! I had a low iron count for a while but the medication made me feel horribly unwell so my doctor told me to stop taking it and just eat LOTS of iron rich foods. I now have a desperately low Vitamin D deficiency which when I am prescribed strong vitamins for it it really helps!

      You are most likely correct about the poor absorption from stomach issues!

  • rachel526
    rachel526 Halp

    Posted

    You guys, it is so reassuring to see other people with the same symptoms. I am 31 years old and have had chronic nausea since the age of 11. It is daily, and sometimes the nausea is overwhelming and I am forced to miss work to just stay home and lay on the couch. I am on the highest dose of Zofran that my doctor will prescribe, and most days it will take the edge off, but never completely relieves the nausea. I have also developed a phobia of vomiting, and though I try to eat well, the fear has started to control my diet and my life. Gaining weight is next to impossible, and I am definitely underweight. 

    Has anyone found any solutions? Or anything to make this more bearable? Is anyone still on this thread? 

    Also, if anyone would like to exchange email addresses, I would love to talk to any of you more in-depth and see if we can find our own solutions. I’d love to hear your stories. 

    • liz25137
      liz25137 rachel526

      Posted

      Hi rachel so sorry to hear that i was on the same boat 2 yr ago. It all started when i was 18 i woke up feeling like throwing up honestly i blamed salmon i ate for dinner i went to the dr he said it was salmonella gave me a shot medication and the nausia was still there went to multiple drs nothing i came to believe it was all in my head they said i had anxiety depression etc which i honestly didnt think so but im not a dr so i beleive them it went on for 6 whole years no explanation it came all the sudden i could be perfectly fine and then felt an urge to throw up which i didnt and i think its worst just having the sensation to vomit feeling weak it was horrible so in 2016 i became pregnant if u could imagine have morning sickness plus my chronic nausia i felt i was going to die it was during my whole pregnancy 1000x worst nausia so when i gave birth they gave me medication thru iv because i had an infection let me tell u rachel i think that saved same life the nausia completely stopped im thankful to god because i would sit and cry and just wished it would go away i hope doctors would look more into it instead of giving us zofran to hide it actually treat it with medication now i come to think that it was a bacterial infection in the stomatch and the medication through the iv cured it i know it sounds crazy maybe insane but since that day my nausia stopped just curious do u feel ur belly hot at the touch i remember my stomach would feel warm all the time my whole body could be cool but only my stomach was hot all the time.

  • lindsey96350
    lindsey96350 Halp

    Posted

    Hi everyone , i have a 13year old daughter who has been having virtually constant nausea for 3 years. She has had mri, blood tests for celiac and bacterial problems, endoscopy, etc . They found hundreds of white spots on her oesophogus they are calling them micro abscesses, they thought it could be EOE but biopsy came back clear. She has no other symptoms except nausea and sometimes vomiting, she has been on 8mg ondansetron for 2yrs which stops the vomiting but not the nausea. She is crying upstairs now as they have just told her that hopefully she will grow out of it, she's lost her friends because of it and is missing so much school. We have very little money but I'm prepared to pay privately for any testing that might help, i note some of you have had allergy testing how did you get this done ? As she does go red around her mouth when drinking anything from drinks machines that dispense into a cup. What other tests could I get for her ? Anybody tried the Chinese shops that offer testing from hair samples ? Any ideas will be followed up and posted here so they can hopefully benefit all of you that are having to go through this horrible situation. It really is time the specialists started researching into this as clearly there are a lot of you suffering and some of you poor souls have been this way decades. I will also add that she has hypermobility and it has been suggested that heat could make her floppy veins more dilated causing low blood pressure which in turn can cause nausea but doesn't seem like there is a way to test that. Thanks for listening and good luck to you all. Lindsey

    • rachel526
      rachel526 lindsey96350

      Posted

      Hi Lindsey,

      I absolutely relate to your daughter. My chronic nausea started at the age of 10, and I am now in my early 30's. I have had several ups and downs in life with my health, but there were two things that started the initial downhill spiral: I had gallstones, which caused the first nausea, but the I was also allergic to my braces. Does your daughter have any kind of braces, implants, etc. that she got around the time the nausea started?

      As someone who has severe food allergies, as well, it IS possible that her diet is playing a large part in the nausea, and it is unfortunately also possible to be allergic to virtually everything. The trick will be getting down to the reason behind her severe allergies, if that is the case. An anti-inflammatory diet may start to help ease some of the nausea, though I understand firsthand how difficult it can be to eat when nauseated, and you must just want her to eat whatever she will take!

      I cannot say that I have found any miracle that has made the nausea completely subside, but I will tell you that alternative medicine and acupuncture has helped me more than anything my MD has given me. In truth, I just finished acupuncture school since I had such a wonderful personal experience with it. Keeping a strict diet also helps. 

      I would love to email with you more in private, if you are interested in talking. I'm still learning my way around this board, but feel free to send me a message and I will do my best to see it and respond. 

       

    • lindsey96350
      lindsey96350 rachel526

      Posted

      Hi Rachel thanks for your message, you are so right we have ended up allowing her to live off whatever she will eat ! I can relate to the acupuncture, I've been amazed at the benefit its given me for muscle problems, but I didn't know about using it for nausea, I will get an appointment for her. I've just booked her in for a body scan, at a Chinese clinic I've heard good things about, so fingers crossed for that. Just been told today she starts on long term low dose liquid erythrmicin tomorrow to see if they can get rid of the 'micro abcesses' on her eusophogus. I will look into the inflammation diet and see if it helps as apparently the waiting list for allergy testing is going to be upto 4 years ! No she hasn't had any implants or braces , it just started one night on holiday at butlins and never stopped, I feel so bad for her and so useless because I can't get her better, and can only cuddle her when she's in tears, I can't say it will get better soon. I hate feeling sick so it must be awful for you all suffering long term. My mother in law keeps trying to get her to eat ginger, she's not keen but I'm thinking of trying it in a receipe, have you ever tried it ?

    • rachel526
      rachel526 lindsey96350

      Posted

      Absolutely try acupuncture for nausea! I'm sure your acupuncturist will tell you this, but it may take some time before she sees results, since the nausea has been going on for so long. She may see some relief as early as the first visit, but give it some time if it does not work right away. When I first started going, I was there two to three times per week, but I found relief pretty quickly due to the frequency of treatment. 

      Good luck with the body scan, keep us all updated on how that goes! 

      You may need to find a different allergist! It should NOT take that long for them to get her in for allergy testing, especially with her being so sick. If you can find an allergist who will do the blood tests instead of the needle test on the back, you may be able to get in sooner, since that is run in a lab instead of the allergist having to perform the tests, then read the results a couple of days later. 

      I do keep ginger on hand, as well as peppermints. Ginger is very spicy, so I would recommend making it as a tea and adding a little bit of honey to help her drink it. You may also be able to find ginger candies: I keep a brand called Gin Gins in my purse, and they seem to help relieve some of the nausea. Again, it doesn't work miracles, but it can have a positive effect. 

      How is she doing today? And how are YOU doing? It must be so difficult to watch her go through this. Don't forget to take care of yourself, as well smile 

       

    • lindsey96350
      lindsey96350 rachel526

      Posted

      Thanks for all your great advice Rachel, she has been off school 2 days this week as facing the 90min and 2 buses journey to school is proving too much when she's really bad. Unfortunately I've been housebound last 2 months due to spine problems so can't take her either. I will hopefully get hubby to get her some ginger and peppermint this weekend when he is home and then we can experiment with making tea and drinks for her. The acupuncture may have to wait till I'm back on my feet as the local one doesn't work weekends and hubby is not here during week to take her, and from your experience it sounds like she needs a few a week. To be honest I'm also going to look into college courses and see if my daughter and I can learn acupuncture as it would benefit us both if we could treat each other, as we both have ehlers danlos syndrome and boy does that cause some serious muscle tension ! Will keep you updated as to how she goes on with the various methods. Take care for now. Lindsey

    • rachel526
      rachel526 lindsey96350

      Posted

      Please do keep me informed! I will be looking forward to hearing how you are all doing. 
    • Patient88
      Patient88 lindsey96350

      Posted

      hello Lindsey,

      i responded to halp and saw your story. One of my daughter's physicians (consulted for a second opinion) said the same - "hopefully she'll just grow out of it. " Makes a person feel utterly helpless, and my poor kiddo was losing all hope. So frustrated, and just broke my heart for my daughter. I hope you and your daughter find peace and relief soon.

  • pippa58442
    pippa58442 Halp

    Posted

    Did your doctor ever mention gastritis to you since your endoscopy showed an inflammed stomach lining?  Gastritis is inflammation of the stomach lining.   Try a food diary to see if any food triggers your symptoms.  Gastritis can cause nausea.  Stick to a bland diet and avoid spicy, rich or fatty foods.  Go back to your doctor and ask about gastritis.
    • lindsey96350
      lindsey96350 pippa58442

      Posted

      Hi pippa , yes her report says mild chronic gastritis but they have not offered anything to help this nor offered any food allergy testing. I kept a food diary but couldn't pin point anything in particular, that said she has delayed stomach emptying so I was told a food diary would be of little help as it could be days later that she reacted ! I can't understand why 3 years later she has still not been offered food allergy testing, i paid for 1 privately but consultant then told me the private ones are not worth the paper they are written on...and tbh it said she had an allergy to virtually everything except lettuce and walnuts !

    • pippa58442
      pippa58442 lindsey96350

      Posted

      Delayed stomach emptying sounds like gastroparesis which can be identified via a gastric emptying test.  Maybe ask for this test and insist on another allergy test from your consultant to see iwhat it shows.  Since gastritis has been confirmed, stick to a bland diet, and avoid rich, fatty and spicy foods.  Write down everything she eats and note any reactions she has.   If you still get no help, change your doctor.
  • lindsey96350
    lindsey96350 Halp

    Posted

    Hi everyone, so I took my daughter to a Chinese clinic for a body scan to see if they could help as 3yrs with nhs is getting her nowhere. They were shocked to see she has Thalium poisoning and her t3 thyroid levels were way out, advised me to go straight to doctors for those, then they said her intestines are not absorbing nutrients and she has a collagen problem in her stomach. So her specialist said he had never heard of Thalium and wouldn't know how to test for it ! He agreed to retest her thyroid though. He also agreed to do allergy test via blood samples so should get those results soon. The Chinese clinic also said she has no good bacteria in her stomach and recommended a high grade probiotic , and her specialist has told her to go dairy free for 6 weeks. She is just finishing a month of eurythromicin so not sure if that could have affected her stomach bacteria reading So I will take her for retesting next month. I will keep you updated with results and tests in the hope they may help others. We will be getting acupuncture soon for her and again will let you know if it helps. Pots is a possibility but the specialists round here don't believe in it ! However I have managed to get a referral to an EDS specialist who does so fingers crossed for that. Hope your all well today , will update again soon lindsey

    • rachel526
      rachel526 lindsey96350

      Posted

      I'm so glad to hear that you are starting to get some answers! Yes, the antibiotic will definitely affect her bacteria reading. It can take quite a while to get all of the good bacteria back to normal levels after a round of antibiotics, so don't be alarmed if her bacteria levels are still low when you re-test her next month.

      How does she have thalium poisoning?! You will want to get down to the source of that, to make sure to get rid of whatever products could be causing that, or take her out of any environments where it could be a possibility. Also, do some research on activated charcoal in the treatment of thalium poisoning - it is not anything that I know much about, but I have heard of people taking activated charcoal for poisonings like that. Definitely do your research, since this is NOT medical advice, but it may be something worth looking into.

      I hope all of these tests and appointments start to help her very soon. Keep us all updated! 😃

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