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Old 11-11-2008, 11:18 AM   #1
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Anyone with Chronic idiopathic nausea?

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?

 
Old 11-11-2008, 09:30 PM   #2
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Re: Anyone with Chronic idiopathic nausea?

I'm not sure exactly what "idiopathic" nausea is, but I have chronic, 24/7 nausea and have for years (2 and 1/2 to be exact). I've been diagnosed with biliary dyskinesia and that's what is causing the nausea. But regardless of what is causing it for you, I know all too well how miserable it is to live a life filled with nausea day in and day out. The things that seem to help me are: Taking Ginger capsules or soft gels (specifically Ginger Force), taking Dramamine (when the nausea gets unbearable and I'm on the verge of running to the bathroom), and making sure I take digestive enzymes with my meals. Another thing that has helped a little is peppermint oil or extract, or peppermint tea. Really anything with ginger or peppermint in it is good to take for nausea. I haven't tried any drugs for nausea other than Dramamine because I'm really sensitive to side effects and my doctor advised against it. As it is, the Dramamine wipes me out and makes me SO tired for an entire day, but I would rather be too tired to think than be unbearably nauseous. I think it's the worst symptom there is.

 
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Old 11-12-2008, 07:33 AM   #3
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Re: Anyone with Chronic idiopathic nausea?

What tests have they done that they've still not been able to diagnose the cause? Have you had your gallbladder checked (HIDA Scan) or a Gastric Emptying Study? I assume they've done the upper endoscopy and other tests. Regardless, the cause may not help as there are a lot of stomach ailments that are hard to manage, but, knowing the cause might open up a few more options to you.

I have idiopathic & mild Gastroparesis and gallbladder issues. For me, DGL Licorice (Chewable) tablets are helpful. That and avoiding unnecessary foods like soda, caffeine, sugar/candy/chocolate, bad fats (Saturated / trans), and Eggs/Mayonnaise.

Once you've cut out all the bad stuff, it's trial and error to see if you can find any regular foods that are making things worse.

 
Old 11-12-2008, 11:57 AM   #4
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Re: Anyone with Chronic idiopathic nausea?

Thank you for your replies. It just means that they have found no cause for the nausea. I am otherwise healthy, and have had so many tests over the past 3 years but nothing ever shows up. I have had several CT scans, coloscopies, endoscopies, ultra sounds, blood tests, gastric emptying,heavy metal testing, psychological testing, you name it ive had it! I have done all sorts of different diet exclusions etc all to no avail. Supplements, enzymes, all with no effect.
I have tried the ginger and peppermint, and they dont do much for me, which is why I am now on such a high dosage of anti emetics (metoclopramide and zofran).
I have been told it is closely related to cyclic vomiting syndrome, but without the vomiting. Also there is little known about the cause of that. They are also individuals who are otherwise healthy but have vomiting cycles lasting days and sometimes months.
I guess Im just looking for some people to relate to. I know that probably it will just take a long time to find the right "cocktail' of drugs to get me symptoms free, if ever.
I am taking a low dose of amitriptyline (an anti depressant) with the hope that it will balence the chemicals in my brain that tell my body to feel nauseous.
Has anyone had any luck with any of the other antidepressants for this reason?
How do you guys deal with the constant nausea? Sometimes I just despair of ever being able to lead a normal life again.....

 
Old 01-08-2009, 06:43 PM   #5
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Re: Anyone with Chronic idiopathic nausea?

Quote:
Originally Posted by Bungee3006 View Post
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.

Cheers

Last edited by Allysdair; 01-08-2009 at 07:13 PM.

 
Old 01-09-2009, 01:09 PM   #6
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Re: Anyone with Chronic idiopathic nausea?

Hi there,

This may be long, so bear with me!

Unfortunately I havent noticed anything that worsens the symptoms, no sleep or temperature influences, like you have. For me it is slightly worse under stress, and due to this if i have an important event coming up, I find that the anxiety about not feeling nauseous often worsens the nausea.

I live on metoclopramide, for me it is a life saver, I wouldnt be able to function with out it, and I have suffered no side effects at all. I have been taking it daily for three years. I am not depressed, and the amitriptyline is not for depression, but as an experiment to control the nausea. They give it to people with CVS, and I have found that it seems to be improving the situation. My doctor thinks I have a chemical imbalence in the brain which is causing the nausea and something in the Ami seems to block the nausea center in the brain, theyre not sure how, as it is not widely understood yet how it all works.
The zofran for me is a rescue remedy, and i only use it if I have severe nausea and I simply must go out, work, am about to throw up etc. I very rarely throw up, almost never. I highly recommend it as a last resort, but I use it sparingly because it is so expensive, I have to pay about 15$ per disolvable tablet, and thats with insurance.
Without these medications I would be nauseous from the moment I wake to the moment I go to sleep.

For me too, there is no obvious dietary cause, or food component. I have followed a range of elimination diets to no avail. I do find however, that it can sometimes be worse when I have an empty stomach and if I wake in the night I will try to have a small snack, piece of bread, biscuit or something, to stop me from being too empty when I wake.
With the supplements etc, there doesnt seem to be anything that helps, I have tried large assortments and combinations over the years.
I do have other medical problems, Im hypothyroid, suffer from anemia ( not being able to eat enough due to the nausea), meckels diverticulum, and colitis on and off, all of which are thought to have no relation to the nausea, most of which began after the nausea, and the doctor thinks they are a result of not eating for so long. (apart from the meckels with is a congenital defect)

I too, like my doctor, am convinced this is a chemical problem and not a physical or psychological problem. This is the route we are pursueing and it seems to be working.
The ami really has improved things and now I only usually have bursts of nausea through the day and not all day, I can usually control these some what with the meto or the zofran, and I am actually hungry and can eat with regularity. I know this drug (ami) is patricularly bad for side effects in a lot of people but I have been very lucky and have not really suffered. It can be quite sedating for some, but for me, I take it in the evening before bed, so it actually helps me sleep. The only side effect I have is dry mouth which I feel is a small price to pay!!! I am willing to try anything, as relentless nausea is a terrible thing to have.

I seem to have rambled on for ages. Its finally nice to be able to share this with someone who is going through the same thing.

 
Old 01-23-2009, 05:55 AM   #7
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metatartus HB User
Re: Anyone with Chronic idiopathic nausea?

Quote:
Originally Posted by Bungee3006 View Post
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?
Wow, came across your post while researching chronic nausea and will be checking back from time to time to see what everyone has to say. I have had chronic nausea mainly since sept. 2008, following a CAT scan. Wondering if anyone else can date the beginning of their nausea to a medical test, in this case involving radioactive iodine. I am now afraid to have any test like this. I did have nausea following kidney surgery (benign tumor) in Jan 2008, went away after about a week (ondasetron helped enormously--not sure of spelling). This current nausea reminds me exactly of that. All day, no let up, always the same, no vomiting, nothing helps, no food correlation, sometimes food makes it a bit better (cause I'm hungry!), other times I feel worse after food, no dizziness. (sorry, hit the submit before i was done)
Wanted to add that dr. is mystified, prescribed Protonix, strong antacid type drug, that does not help. I take over the counter ranitidine at times. Dr. tending toward brain problem, will probably recommend brain scan next visit, but I am doubtful, feel like it's esophogeal but dread a gi or endoscopy test cause I feel like that type of thing triggered it to begin with. Anyone had an endoscopy and how was it? Thanks for listen,sorry for rambling.
s

Last edited by metatartus; 01-23-2009 at 05:59 AM.

 
Old 02-22-2009, 05:26 PM   #8
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Unhappy Re: Anyone with Chronic idiopathic nausea?

Hello to everyone who has posted on this thread, i too am knew and have just found this site.
I have been suffering from chronic nausea for almost 2 and a half years, i have had many tests most come back normal, i do have a slightly elevated ESR which no doctor has been interested in, I have not had a HIDA scan as most of the drs ive seen don't know what it is or don't think i need one.
I do have a small hiatus hernia and reflux but the drs dont think this is the cause of the nausea as i have been taking nexium for the reflux but it doe's not stop the nausea.
I also agree with one of the posts about temperature as i feel worse when it's really hot or really cold.
My nausea is always pretty bad, some days really bad the anti nausea drugs have little to no effect but phenergan does help a bit, i was diagnosed with anxiety but it was only at work and about the nausea itself that i felt anxious, my boss knew i was sick and suffering anxiety and decided to put even more pressure on me and eventually i got so sick i couldn't work any more.
Since leaving my job the nausea has not improved and i have not been able to work, most people drs included just think i'm using the nausea as an excuse not to work, but i worked for almost 20 yrs without ever being out of work before this happened.
Ive seen psych drs and psychologists and taken drugs they prescibed but it has not helped, i think that the latest Gastro dr has diagnosed me with idiopathic nausea because i'ts the easy way out for him.
One thing i have noticed is that i feel worse when standing slightly better sitting and slightly better again when i lie down.

People who have not suffered with chronic nausea do not understand how debilitating it is and how over time you lose hope of ever feeling normal again and how hard it is to come to terms with living like this for the rest of your life.

 
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Old 02-24-2009, 04:11 PM   #9
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Re: Anyone with Chronic idiopathic nausea?

Glad you found this site, Lowt. I can't imagine what it is like to suffer from chronic nausea for years and I truly sympathize with you and the others on this forum. Four months of nausea nearly did me in. My last visit to the dr. (who seemed only mildly interested in my complaints) I just stared him in the eyes and said "I really can't stand this" and I think this caught his attention.
I still have no idea what brought my nausea on, other than that it came directly after a CAT scan and was constant after that. BUT, I am pleased to report that it has gone as suddenly (almost) as it arrived. Due solely I think (because the nausea stopped within hours of my taking the first pill and has not returned) to my taking a probiotic called Align, which has a unique bacterium whose name I don't have at hand at the moment. My vet, of all people, suggested I try this. So who knows why this helps but it clearly has, and I am not going to even try stopping. In my research I came across another possibility---food dyes added to pills. I suggest all of you check (you can usually find this on the net) what food additives are in any pills you take, and also in the foods you eat. In my case I noticed some nausea even before the CAT scan when I took my thyroid pill. Turns out that only one of the dosages was free of food dyes; all others including the one I took, contained several food dyes. Just to be safe, I now take two 50mg tabs (cause that size is dye-free) instead of the 100mg tab. My theory is that something royally screwed up my innards, probably the stuff I drank before the CAT scan (who knows, also, but that it was a contaminated batch??), and that's why the Align helps. I really wish the rest of you on this forum could find something similar. (and I sure hope it continues to work for me!)

 
Old 05-24-2009, 11:57 PM   #10
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Re: Anyone with Chronic idiopathic nausea?

Quote:
Originally Posted by Bungee3006 View Post
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 too have had nausea for 3 years now, though it's only been constant for the last 1. Before that, it only happened a few times a month. I take Remeron (an antidepressant and 5HT-3 antagonist) and Prilosec (a PPI). I have next to no nausea with these drugs. I would recommend the Remeron if you can afford some weight gain. The side effect profile is much safer than Reglan. Good luck =)

 
Old 05-25-2009, 04:18 AM   #11
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Re: Anyone with Chronic idiopathic nausea?

Quote:
Originally Posted by psychcat View Post
I too have had nausea for 3 years now, though it's only been constant for the last 1. Before that, it only happened a few times a month. I take Remeron (an antidepressant and 5HT-3 antagonist) and Prilosec (a PPI). I have next to no nausea with these drugs. I would recommend the Remeron if you can afford some weight gain. The side effect profile is much safer than Reglan. Good luck =)
Thanks for that info, I will keep it on file. And I hope you continue to do well. I thought my chronic nausea was gone, and that I had identified the culprit as a drug, tramadol, that I was taking. But after a month free of nausea, it returned for 5 days, then disappeared completely. Have kept logs of what I eat and do, to correlate with nausea, but can't come to any conclusion. It's as if something triggers it off and it stays sometimes for days, sometimes for months. Only taking ramitidine now, as I haven't found any drug that helps when I have it. Good luck to all.

 
Old 06-06-2009, 05:16 AM   #12
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Re: Anyone with Chronic idiopathic nausea?

Quote:
Originally Posted by metatartus View Post
Glad you found this site, Lowt. I can't imagine what it is like to suffer from chronic nausea for years and I truly sympathize with you and the others on this forum. Four months of nausea nearly did me in. My last visit to the dr. (who seemed only mildly interested in my complaints) I just stared him in the eyes and said "I really can't stand this" and I think this caught his attention.
I still have no idea what brought my nausea on, other than that it came directly after a CAT scan and was constant after that. BUT, I am pleased to report that it has gone as suddenly (almost) as it arrived. Due solely I think (because the nausea stopped within hours of my taking the first pill and has not returned) to my taking a probiotic called Align, which has a unique bacterium whose name I don't have at hand at the moment. My vet, of all people, suggested I try this. So who knows why this helps but it clearly has, and I am not going to even try stopping. In my research I came across another possibility---food dyes added to pills. I suggest all of you check (you can usually find this on the net) what food additives are in any pills you take, and also in the foods you eat. In my case I noticed some nausea even before the CAT scan when I took my thyroid pill. Turns out that only one of the dosages was free of food dyes; all others including the one I took, contained several food dyes. Just to be safe, I now take two 50mg tabs (cause that size is dye-free) instead of the 100mg tab. My theory is that something royally screwed up my innards, probably the stuff I drank before the CAT scan (who knows, also, but that it was a contaminated batch??), and that's why the Align helps. I really wish the rest of you on this forum could find something similar. (and I sure hope it continues to work for me!)


Hey can I take the Phillips probiotics or does it have to be align. I bought Phillips Colon Health Probiotic supplement - it has 1.5 billion cells per capsule. i want to take it because I have chronic nausau with no gallbladder. I thought I would give this a try because I think my digestive system is messed up since I took all the antibiotics in the winter time from being sick and then I also had my gallbladder taken out so I think my system is messed up!

 
Old 06-06-2009, 06:28 PM   #13
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Re: Anyone with Chronic idiopathic nausea?

I'm not sure whether it's something unique to Align, or whether any probiotic would help the same way. The various probiotics have slightly different bacteria, so it might be worthwhile trying one for a month or so, and if it doesn't help, try another. I have tried using Align one day, and a different probiotic the next day, just alternating with the idea of using a mix of bacteria. Good luck.

 
Old 09-25-2009, 02:52 PM   #14
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Re: Anyone with Chronic idiopathic nausea?

Hello, I can absolutely relate, My nausea is 17 years and counting. Mine began with a sharp pain below my belly button after which i got nauseated and have had it ever since. The nausea varies from mild to extreme but constant and I have yet to vomit. All tests are normal and i am currently looking into the Adrenal Glands and the Parathyroid glands with not much hope. I've noticed also the temperature relationship, if I get too hot or over heated from working outside or playing soccer it seems to intensify the nausea most of the time. Also consuming alcohol intensifies the nausea the next day severely. I have also noticed that it has something to do with my nerves as well, I sometimes am unable to even ride in a car, I panick and get extremely nauseated. About a year ago I fell into a fear state where I was unable to leave my house for over a month .I've been through Prilosec, Prevacid, Xantac (before OTC), Lexapro, Xanax, Protonix and about a half dozen or so more with no results. Currently i take Promethazine (which may as well be a sleeping pill)

Please keep me informed if you have any success in trying to resolve these problems and I will do the same.

Good Luck

 
Old 10-03-2009, 01:57 PM   #15
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Re: Anyone with Chronic idiopathic nausea?

I am very pleased to find this thread and thank you all for posting here. I would like to offer a suggestion and that is to look up a Dr Koch at Wake Forest Institute for Regenerative Medicine. I have never met him but I have done some research and found that he is an expert in chronic nausea I believe. I am in the UK and so I cannot go and see him so I am looking for someone similar here.
Whilst I am here I note that this thread has been going on for some time and so may I ask if the originator or any of the other posters have found an answer to their constant nausea (other than those who have already repoerted)? If so please let us know.

 
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