Originally Posted by Bungee3006
Hi guys. This is my first time posting, Im looking for people with chronic idiopathic nausea. Having recently been "diagnosed" after 3 years of terrible sympotoms, Im looking for others with this disorder. I can find barely any information online, and it seems that there are no recognised treatment plans. Just trial and error.
Its not strictly a digestive disorder, but with the symptom being nausea, I guess this is the board that would most closely fit.
I am taking:
Amitryplinine (with the hope it can prevent the nausea)
Metoclopramide (to eleviate symptoms)
Zofran (for a rescue remedy for bad nausea)
Anyone else going through this? And how are you managing your symptoms?
I have exactly the same problem and have been dealing with it for the past 10 years or so. Just as you, I've had every test possible and nothing has come back conclusive. Most doctors would automatically go for the "You have GERD" and push PPIs, which in my case made things worse.
POST EDIT : I thought I would clarify how Chronic Idiopathic Nausea is loosely defined for me
- No gallbladder component. Ultrasound/HIDA normal.
- No Hypercalcaemia
- Normal CBC, WBC, sed rate, CRP, thyroid
- Normal EGD
- No chest pain
- Vomiting is rare
- No diet or food correlation: spicy food, fatty foods, caffeine, etc. have no influence
- Normal esophageal PH test
- Normal LES tone
- No psychological component eg. anxiety disorder
- Normal digestive process/bowel movements
- No Gastroparesis
- Normal small bowel follow-through
END POST EDIT
I spent a couple years reading medical textbooks and published papers so I could at least speak intelligently/medically with my GI doctor. He finely admitted that this is probably CIN and had no idea how to approach it . Like you said, there is just trail and error.
Looking at your meds, I'm not familiar with Amitryplinine and Zofran, but I'm very familiar with metoclopramide and urge caution with it. In addition to being a serotonin 5HT3 receptor antagonist (what Zofran does), it is a dopamine D2 receptor antagonist. The dopamine component of the drug left me in a pretty severe depressive state and was quickly resolved after I discontinued. My GI Doc has a pretty low opinion of metoclopramide and its associated ADRs as well.
I've done a great deal of things over the past couple years and something seems to have worked to make the condition manageable. I don't want to just write large paragraphs along the lines of "eat well, de-stress, sleep better, blah blah" and I'm not sure what has truly helped and what is just coincidence; nor do I want tell you try any particular supplement, even though I have a pretty large regimen of supplements I take on a daily basis based on my own medical research.
One thing I'm absolutely dying to ask and hope you respond to. I'm convinced this condition has no "food" component, as in GERD. I've woken up with a completely empty stomach and felt viciously nauseous. I try to approach things as scientifically as possible and began keeping detailed logs of nausea events and came up with some interesting commonalities:
- Lack of sleep: If I sleep less than 7 hours, the following morning and subsequently throughout the day I will have an increase in nausea severity. Again, no food component.
- Temperature transitions: Bear with me on this one. The first time I explained this to my Doc he looked at me like I was crazy (I don't blame him). I've began noticing and reproducing situations that caused me to become suddenly nauseous. Examples: Exiting from a hot shower to a fairly cool bathroom, leaving a warm house to walk in the cold, etc. I've theorized there is some sort of sensory shock/over response going on in the enteric nervous system.
Do you experience anything along these lines? Please let me know!
A few more things to consider: I'm sure they tried PPIs with you and if you were like me, they were probably unsuccessful. However, the last year or so of published papers in GI journals have featured commentary on the relative ineffectiveness of PPIs for GERD like symptoms. It is also very possible to experience non-erosive silent GERD (meaning it wont show up on an EGD and it wont hurt after eating) that could cause nausea. Some tests to consider that would completely rule out any GERD like component would be a 24 hour PH test and a esophageal motility study. In the 24 hour PH test, a small wireless capsule is inserted in your esophagus and transmits PH levels to a small recorder worn on your hip. A esophageal motility study would rule out any problem with lower esophageal sphincter tone. Please let me know if you've had these or not.
I can organize my thoughts about what lifestyle/food/supplements might have had the greatest impact on my condition, but that would be a pretty long post. In the meantime, I'm hopeful you'll answer my questions and maybe you can chime in with additional information.