Chronic nausea

[Kalina]

I removed my gallbladder in October 2019 because it had an adenomyom, but my symptoms have been the same.
Nausea gives me the feeling of general unwellness too. I feel like dying when it’s severe, to be honest.

 

[Wolfcub]

I feel like dying when it’s severe, to be honest.

I am not surprised! It is no fun to feel sick like that. I am so sorry you get that unremitting symptom.
I know how hard it is to get anything out of life when something like that is happening. It's just bleak.
Is there anything you take at all which helps?
Sometimes the most surprising things can help. I found a tiny shot of brandy would help me when it was bad, for instance. But of course that would make it worse if it was actual stomach irritation.

 

[Kalina]

I tried Zofran, but in the end I found out that Zyprexa has both antivomiting and analgesic properties, plus it helps me emotionally, so I am stuck with it now. I can’t eat without it anymore, the pain and nausea are too much to bear. I wish I could drink brandy and be tolerantly well, but my pancreas is occasionally inflamed, so it’s out of the question. Coxsakie did that too. You are so lucky you have nausea so rarely. It’s the worst of all symptoms.

 

[Wolfcub]

You are so lucky you have nausea so rarely. It’s the worst of all symptoms.

At one point I had it almost every day. That went on for months. Particularly during the first year. But I was fortunate that most of the time I was able to eat in spite of it as it wasn't a constant thing, would often respond a little to my "home remedies" and would often ease up later in the day.

 

[Lord Randal]

Dear @Kalina, I am sorry you passed through all this. I know how 24/7 symptomps prove to be terrible, because they don't leave you a second of peace (I have in particular constant severe urethral burning and urgency).

Don't know if this will help ...
I have a young cousin who has been suffering of chronic nausea for one year, until she discovered it was caused by hormonal troubles (and a bit of neuropathy). An endocrinologist helped her and now she's fine.

This is only her experience ... Hope it will help you!

 

[Kalina]

Dear @Kalina, I am sorry you passed through all this. I know how 24/7 symptomps prove to be terrible, because they don't leave you a second of peace (I have in particular constant severe urethral burning and urgency).

Don't know if this will help ...
I have a young cousin who has been suffering of chronic nausea for one year, until she discovered it was caused by hormonal troubles (and a bit of neuropathy). An endocrinologist helped her and now she's fine.

This is only her experience ... Hope it will help you!

I am sorry your cousin had to go through this suffering. It must have been horrible for her, as I know from experience. Do you happen to know what kind of hormonal problem she had? I thought about it several times to go to an endocrinologist, but coronavirus put a halt to all my plans. Now that you say it, I will arrange an appointment asap.
As to your urethral burning, I suppose you were already checked by a urologist? It can be caused by HSV or other atypical viruses and microbes, if the simple urine cultures are normal. I had it too many years ago and it went away by itself. It was very annoying, though.

 

[lookinglass]

I suffer with 24/7 nausea, sometimes vomiting, stomach pain and pancreatic inflammation. I also have high coxsakie B antibodies. I read that nausea is a common symptom among CFE patients. What’s the pathophysiology behind this symptom? What is to blame, the stomach, the pancreas or the brain inflammation? Does it ever go away? Because it drives me crazy, it has been a year and I can’t endure the shock of waking up so nauseous anymore.

Kalina i send my heartfelt sympathies. 12 years ago aged 70 i had a flue shot and was hit by ME/CFS not long after. Vomiting and diarreah plus arrythmia unable to stand unaided, one year bed rest and daily shots B12 and Magnesium. I lost 4 stone in as many months. But my dear girl there is light at end of thhe tunnel! I discovered Lorazepam *1 mg. which stopped the nausea! Google it. It was a miracle I have relapses a week in bed now and then but it is nothing like as bad as that first year! It will pass....feed your immune system good stuff. Read book Plague by Dr Judy Mikovitzs. Currently back in bestsellers list in US. She wil tell you what your condition is and how you got it. Xx

 

[Pearshaped]

@Kalina what worked for me is low dose mirtazapin.(15mg daily)it was meant to help me sleep but turned out to solve nausea and along with sleep meds it took the edge off overstimulation..

hope you will find smthg that works for you.

 

[Kalina]

@lookinglass, what a story of yours, how one “innocent” vaccine can have such a lifelong impact on one’s life. How long did you have to take Lorazepam to stay nausea free? Or do you still take it? Did you also have stomach pains? You say it took a year for you to feel better, but I don’t notice any improvement after a year, it’s so disheartening.
@Pearshaped, I tried mirtazapine 15mg, but it made me too dizzy, I could barely walk. I had to increase the dose to 30mg and it made me overactive. Then I read all the stories about mirtazapine withdrawal, so I quit completely after a week of use. It’s not a bad idea, though, if I hit the bottom, then I will take it again, it’s not far away actually. For now, I take olanzapine 2,5mg, it doesn’t make me happy, but I can function at least.

 

[Lord Randal]

Dear @Kalina, maybe an endocrinologist could really help.
As far as I remember, my cousin had "natural" hormonal changes in her 13-14 but they came too strong and too fast. This lead to her trouble (stomach pain, chronic nausea, vomiting).
BUT she has also been diagnosed with St. Anthony's fire ... maybe these two conditions were related.
She solved them both, though.

For my urinary issues, they are due to a very severe illness: severe chronic urethral inflammation, interstitial cystitis, hemorragic UTIs and Tuberculosis UTI since I was 10 (I am a male). I have diagnosis but not cures, and it burns like hell the whole time, and often it becomes deadly painful.
Anyway, thanks for sharing your experience!

1. Just a question: have you been checked with the viruses you said, or your burning went away on its own? This virus theory seems interesting.
2. If you have questions, I can ask my cousin.

A hug!

 

[Kalina]

@Lord Randal, 2. it’s most interesting and unusual to have St. Anthony’s fire in our time. How did it happen? Just curious.
1. I was tested for everything except anaerobic bacteria, so it could had been it. Who knows. It went away after 2 months, I don’t remember exactly. I had only slight burning, but the urge for urinating was quite unpleasant.

Hugs to you too I wish I could help more.

 

[Lord Randal]

Dear @Kalina, thank you again.
To answer your curiosity, my cousin had St. Anthony’s fire at 13 years but no doctor knew why ... it happened in 2018. It is probably due to immunitary sistem’s troubles, who knows? I had a TBC UTI only visiting ospitals since my 10, there are many strange things!
For my cousin, doctors said that immunitary diseases could have caused her nausea too, but they never agreed about it.
Anyway, I think that an immunologist could be important for a complete evaluation about nausea, although only after visiting an endocrinologist and if you have other symptomps like rashes, allergies, ...

Unluckily I can’t help more ... but ask if I can!
And glad your urinary symptomps went away ... I understand your bladder troubles too, I’m also chained to the bathroom, but glad to know someone got rid of it.
Let’s hope for all and best regards: sincerely yours.

 

[Pearshaped]

Domperidone?
Promethazin?
Have no experience with these though.

 

[Booble]

Now the weird thing is that whatever "bug" I caught in March 2018 which started this whole thing, was never revealed. I didn't go to the doctor until the 4th week of it. He did a full health work-up but no nose/throat swabs. I asked about that, but he said swabs wouldn't show anything by that stage anyway.
I'd never had throat symptoms.
Bloodwork revealed nothing at all untoward and no signs of infection; only some very slight anomalies re: electrolytes. Those were not even bad enough apparently to warrant a "red flag" but the lab did mention them.

At the time I endlessly searched for clues as to what virus may have caused the weird "flu-like" illness (yes, flu-like....but not quite.) It was constantly afebrile, with no respiratory symptoms, just an endless (and then recurring at intervals) malaise just like I had flu.

So -no fever and a lack of other classic symptoms according to each infection, meant the illness matched no viral profile including the whole list of enteroviruses, and believe me I examined every single one. Any kind of flu was almost ruled out as there were no respiratory symptoms. Nobody knew what the heck it was.

What I had, which happened suddenly at a certain time on a certain date was:
shakiness
weakness
nausea
slight but persistent head pain over right eye
a "fluey" malaise (a constant feeling of the first day of coming down with flu)
heart palpitations
sudden exhaustion
upset lower gut (in the 4th week)
loss of appetite (and sometimes incredible ravenous hunger and food cravings for canned sardines, butter, bread, chocolate, eggs....very often in the middle of the night, alternating with nausea.)
exercise intolerance
Sleep disruption
occasional "tight chest" which would pass within minutes, with some sharp chest pains.
weakness in leg muscles and sometimes complete spasticity in legs which brought me to the ground literally for about 3 mins. each time.
And a feeling of "sentimentality" where things would bring me to tears so easily. (music, movies, memories etc) This alternated with an empty feeling where I found it hard to connect with anything heart-felt, and instead felt a bit robotic, just enduring each day and plodding on with things I had to do.

(Heart checks were all okay) It was not a cardiac infection either, apparently.
So -what virus caused all that....I don't know. But it came on suddenly out of the blue and I had always been fit, strong, well, healthy, athletic, had a strong digestion....etc

My doctor also grilled me about possible clues as to it being poisoning of some kind, but that was kind of ruled out. Again it fitted no poisoning profile (and again, I researched every single one, including possible organophosphate/herbicide/fungicide/ or other toxicity from neighbouring farmland.) No profile described what I was experiencing.
And have been in a remitting/relapsing cycle for 2 years since.

Wolfclub, may I ask your age?

 

[Kalina]

Domperidone?
Promethazin?
Have no experience with these though.

Good ones, but they only fight the symptoms for several hours. I need to get to the root of the problem, maybe I am too naive, but I want it to go away.
An update: I did a gastroscopy a week ago and they told me that I have bile reflux and mild esophagitis and gastritis. Bile is supposedly irritating for the gastric lining and it could be the reason of the nausea. Could. Nothing is certain.

 

[lenora]

No Kalina, very little is certain. We can and do go from test to test hoping to find out the source of a problem. It's not unusual and certainly not unheard of for many of these tests to cause an additional problem. That's why some of us would rather sit it for a time and see how things go.

Yours, Lenora.

 

[lenora]

Kalina.....Are you on any meds at this time? I ask because you mentioned food cravings and I've had some odd ones that only started within the past 2 mos. or so. MY thinking is that it's a medication that's doing it, and there's some precedent for that as I had the same thing happen (except the cravings then were for sweet things) and I gained a fair amount of weight which then led to pre-diabetes.

Before you head off to another doctor, why don't you try numbering the symptoms and that may help give her/him (and you) a lead as to where to look first. If the next doctor doesn't have any answers, I'd say it's time for you to make an appt. with a neurologist, show him/her the list and get set for more testing. It would be worth your while to rule everything out. I'm not telling you what to do, but these are things I would think about and do for myself.

 

[Kalina]

@lenora, I have been to a neurologist, did a brain MRI, it was negative. I don’t like going to the doctors. It’s not what I usually do. I didn’t even care to do the yearly check-ups in the past. And I would wait it out if there was a certainty that it would go away in a year or two, but I read posts of many ppl who have nausea and vomiting for decades and it scares me, mostly because when I get older, I won’t have the endurance I have now.
As to food cravings, I like sweets, but when I am
extremely nauseous, I don’t want to eat even them.

 

[Lord Randal]

Dear @Kalina, just a suggestion: do not always think to the worst possibility. Reading people experiences online could be useful, but I personally think it should not scare you. Every person is different and there is no reason that you will be like this unlucky minority. So ... think positive when you can!
I ensure you it helps me in my battle ... If I think I have no choice (which could be true in my situation, though) what is the sense to keep on living and suffering?
We all deserve to stay positive, because every day could be the dawn of a better tomorrow.

 

[Kalina]

@Lord Randal, unfortunately even the gastroenterologist and the CFE specialist don’t give me many hopes. If the doctors don’t know what to tell to the patient, the case is almost hopeless. Thank you for the encouraging words, though, they are mostly appreciated.