24x7 Nausea that never changes

[lesliesdad527]

My daughter has been usffering from a persistent nausea for over 2 years.  She has a morning sickness type nausea that is constant and nothing makes it better or worse.  She has had multiple tests that indicate that her GI system is functioning properly....she does not have Celiac's or lactose intolerance.  All of her blood tests are negative.  She has been on dozens of nausea meds including high power cancer meds for nausea...all with no effect.  She wakes up with it , endures it all day and goes to sleep with it.  Nothing she eats makes it better or worse.  On a scale of 10 it is a 6.  

We have been to two of the leading Children's hospitals, tried a Chiropractor, tried accupuncture...no help.

Any suggestions?

Desperate for a solution.........

[Avalonna]

We re-started the Propranolol during this episode, but when he was admitted to the hospital a few days later (for evaluation & testing) his pulse was 40, so they took him off it. We will discuss it with the neurologist next week. Propranolol is not used to stop a migraine in progress, but is used to prevent migraines.

The sweat test for cystic fibrosis -  I'm not even sure why they did it. In the hospital, my son's potassium levels were slightly low, and they thought it might be a pancreatic issue (CF affects the pancreas). We were at a teaching hospital, and to be honest, I think the medical students get all excited over little things. Unless your daughter has respiratory problems, I wouldn't even consider CF.

Our gastroenterologist listed mild SMA syndrome (Superior mesenteric artery syndrome) as a possibility - basically, a large blood vessel compresses the duodenum. It's rare and tricky to diagnose, but it may be worth looking into, especially if your daughter lost weight or gained height around the time the symptoms started. http://emedicine.medscape.com/article/932220-overview

[lesliesdad527]

I empathize with you and your son.  My daughter has had all of the tests you mentioned except for the CF test.  THe big difference is that she has had no relief for any of it.  We have only seen GI doctors....our next step was a neurologist.  I believe she has also been on all of the meds except maybe the Propranolol...I will have to check.  We are going to our 3rd GI doctor next month.  I must admit we are not very hopeful.

We started with the migrane approach since a friend of hers had a similar problem, but that did not work for us.  She had a second friend that was experiencing nausea and significant abdominal pain and severe weight loss....she was diagonsed with a colitis of some rare type after two colonoscopies.

Let's keep each other informed on progress....this is crazy that a solution can not be found.

Thanks for the post.

[Avalonna]

May I join this thread with my own similar problem, but no solutions? My 15-year-old son has chronic nausea also. He had what was diagnosed as abdominal migraine 3 years ago, which manifested as nausea lasting 5 - 10 days. No migraine meds were effective. A neurologist put him on Propranolol, and the episodes went from every 6 - 8 weeks to ZERO. He stayed on the Propranolol for a year, then weaned off and was symptom-free for another year. In April (7 months ago), he had another 10-day episode. We went to see a new neurologist (the other one had moved away), who was reluctant to put him back on the Propranolol after just one episode; also, my son runs track and cross-country, and Propranolol prevents the heart from speeding up as much as it normally would, so can interfere with running performance. Instead, he prescribed a bunch of supplements: vit. D, CoQ10, magnesium, & B-complex. He also wanted him to eat a lot of protein. He did a lot of blood work, which was all normal.

My son was fine until the end of August, then he got nauseous again, and has been sick ever since. It has never lasted more than 10 days before, and we are at almost 7 weeks now. He has had an extensive workup, all normal, including:

Abdominal & kidney ultrasound
Gastric emptying study
Lactulose breath test (to look for small bowel bacterial overgrowth)
Upper endoscopy (EGD) with biopsies
Celiac blood work (and biopsies)
Sweat test (to check for cystic fibrosis - results were a hair over normal)

We have tried more than a dozen migraine and GI meds with no effect. A double dose of IV Zofran didn't even help. The gastroenterologist put him on Cyproheptadine (Periactin); he was on that for 2 1/2 weeks without much change, then we called the neurologist (who he hadn't seen while sick) and he changed him over to Amitriptyline. The day before he switched meds he suddenly got better; we didn't know whether this was the Cyprohetadine finally kicking in, or a coincidence. We switched meds anyway. He sees the neurologist next week and will discuss going back on the Cyproheptadine.

Since then he has been up and down. After missing a full month of school, he has been in school most of the time. Yesterday and today he is worse again and out of school.

We have also seen a naturopath, who is treating him from both a migraine and a GI standpoint. She prescribed probiotics, digestive enzymes, and herbal formulas for migraine and for liver function. We just did food intolerance testing (I am skeptical about this ELISA food testing, but giving it a shot) and are awaiting results. We also just started a gluten-free diet, because I have learned that there is a lot of non-celiac gluten intolerance.

The gastroenterologist thinks he has a functional disorder like functional dyspepsia and is very reluctant to do any more testing. She said we could continue testing infinitely, always thinking the next test will give us an answer, but she thinks there is nothing pathological going on. I feel more like I want more testing (within reason) to rule stuff out.

I am desperate to get him better. Please, any help would be most appreciated.

[lesliesdad527]

Thank you for the response.   She was not on the celiac diet long, but the doctors came back and said she did not have it....no matter what she eats it doesn't change.  You would think that with celiac's, when she ate wheat, it would worse...nada.

She had the gastric emptying and it was a bit slow, but still in normal range....she was on Zofran, but no change.  No colonscopy or HIDA scan that I recall.  A doctor recommended the therapist, but we have not gone that route yet....that is still an option, but she is (at least to us) a very well adjusted young lady.  Yes she is frustrated...believes NO doctor knows anything.

Thanks for the post.

[Widmannkelly]

I am 25yrs old, female, and I have chronic nausea as well. It started 5 years ago Thanksgiving morning out of the blue. I've been admitted to the hospital numerous times so that they could run a battery of tests. Phenergan helped, but made me too drowsy to function and Zofran was effective, but too expensive to be on it daily, as I have health insurance but no pres drug coverage.  Cal Gal is right about celiac taking weeks to clear up symptoms. My nausea turns into vomiting within about 2 minutes of eating if I have gluten, but it took me many months before I realized that was why. I didn't know what celiac was at the time.  

Check your records and see if they have done these tests on her: gastric emptying, colonoscopy, and a HIDA scan. If they have not done a gastric emptying study, that needs to be done pronto. Slow stomach emptying into the small intestine was ultimately the cause of my sudden-onset nausea, although it is idiopathic, meaning they don't know why I developed it. With the other two tests you could ask her doc if they are necessary.  Also, is she seeing a therapist? I'm not saying at all that she is imagining her symptom or that depression or anxiety is manifesting as nausea, although this is possible and could be something  to consider. I ask because she most likely is VERY frustrated and stress can exacerbate any physical ailment.  

[lesliesdad527]

She was only on the glutten free diet for a couple of weeks, but her symptoms never changed when she ate wheat products...she has no pain, diarrhea... only nausea.  I can not answer all of your questions about the marker....I do not believe they followed up with a gene test.  

They did not do extensive testing on the gallbladder that I recall.  They did some bile reflux testing on the intestine and put her on some meds, but did not work.

The thing that seems to be unusual for the doctors is the unchanging symptoms....most days it is the same, some days more severe, but all days it is there.  We can not determine any cause and effect to the slight changes in symptoms.....thanks for continuing to engage

[CalGal]

The standard tests for gallbladder problems, which can produce miserable nausea in some, are an ultrasound and HIDA scan with CCK injection. The ultrasound shows structure and the radiologist needs to look closely to see if sludge is present - it can sometimes be missed. The HIDA scan with CCK gives an ejection fraction - amount of bile released with the stimulation of CCK. Check to see if both those tests were done.

They're not 100% diagnostic, but they're the best they have at the current time. Even with those, gallbladder issues can be missed since the tests can come back normal even if gallbladder issues are present. Not saying that's what's going on, but it's worth checking into.

With the celiac, how long was she on the diet? Was all wheat, rye, barley and oats removed?  It can take many many weeks for some to show changes. Which test for celiac did she have, and which marker was noted? Did they say she didn't have celiac just because nothing changed with the diet? Did she have her genes checked to back-up the 'marker?' If not, I'd suggest you consider checking into that further. If she is carrying the alleles, then checking for the presence of cross-reactivity to casein should also be investigated. Many with celiac cross-react and this can continue the discomfort of the problem even when people are completely gluten-free.

[lesliesdad527]

Thanks for the response....she had an ultrasound...not sure about specific gall bladder tests, but I seem to remember one...  No other symptoms...occasionally she says she is hot, so we asked about hormones....her cycle is regular and they took MANY blood samples and all come back normal.  So no hormone meds. They initially said she had a celiac marker after the 1st endoscopy so we put her on the diet, nothing changed and they came back and said she did not have it....nothing she eats makes it better or worse.  The doctors have said that her GI system is functioning normally, but something is sending a message of nausea....they did a CAT scan to check and see if there was pressure on the 'vomit' center of the brain, but it was normal.  She has had 2 endoscopys, 1  24 hr. impedence test, barium swallows...slow and fast, stool samples, 24 hour urine test, keytone breath test, ultrasound, CAT scan....every med you can imagine and multiple blood tests....all have been normal.   She seems to be a well adjusted normal young lady....normal stresses from growing up, but nothing outside of the norm.....woke up 2 1/2 years ago feeling nauseaed and it has never stopped.......

[CalGal]

What tests has she had to look at possible problems with her gallbladder? Any other symptoms besides nausea, even those that might not seem relevant to the GI system? How was she tested for celiac disease? Is she on any form of hormonal meds?