I'm very curious to hear if you ever get this figured out - my son has the same cyclic vomiting, AND the same "they think he has a UTI, treat him with antibiotics but the culture comes back negative" thing. I've never heard of anyone who had both of these things going on before.
My name oa Tarah, I'm 26 years old and have been having these episodes since I can remember which my first memory was when I was 4 years old. These burps would always start and eventually I knew if I tasted what I referred to as "the burp" that I knew within hours if I didn't go ahead and provoke myself to start the throwing up process that I would be violently I'll throwing up. Mine use to happen maybe twice a year but over the past year it have happened more and more frequently and now it's happening at least once a week. Like most of you I'm tired and this condition is taking a toll on me emotionally and physically. I think the worst thing is the long list of misdiagnosis. I have been to GI doctors in Memphis, Dallas, and Baton Rouge. I have been diagnosed with gastroparesis, cyclic vomiting syndrome, I have had my gallbladder removed, and once it was removes they found that there was nothing wrong with it. I'm not sure how long everyone has been dealing with this but mine has been for 22 years, so eventually I started ending up at the emergency room when I would become so violently ill. The only things that I have in common when I have this occur is a high white blood cell count (normal ranges from 5-10) at the highest in the high 40's, also even though I have no symptoms what so ever I am also ALWAYS diagnosed with a unitary track infection. With thtreatment, track infections even though they tell me that I have a severe infection I have no symptoms and have gone without taking any antibiotics for these so called uti's and by the next day when the episode is over they are miraculously gone with absolutely no treatment at all. There have been a select few times when I've had an episode that also my liver enzymes have been high, and I have had to be hospitalized but also once the commuting spells are over all of the liver enzymes tests are normal and I no longer test positive for a uti. My er bills and visits started getting ridiculous because I was out to find the answer but all I did was make the er doctors think I was crazy and eventually becamr a "frequent flyer" to where the doctors thought I was just seeking drugs because I had such severe stomach pain, which is far from the case. I still to this day have no answers. I have been talking to my best friends mother who is a RN at Tulane hospital in New Orleans who works on the urology floor and keeps telling me that something isn't adding up with the high white counts and chronic uti's espically that just disappear after the episode with no treatment and she believes that there is a much bigger underlying problem that involves my kidneys. I am scheduled to see a urologifr next month and am hoping to get some answers. Like some of you said mine also always starts early in the morning sometimes around 3 or 4 am and lasts up to 10-12 hours. I don't know of any of you have had any of these same symptoms but if you have PLEASE post about it, I have almost given up on doctors since every doctor has been a dead end with no answers so I'm to the point Im ready to figure this out myself because its only getting worse. As far as finding relief at home I have been prescribed zofran, phenegran, and antiacids. None of those work the only thing that gives me INSTANT relief if I take it as soon as I taste the first burp is peptobismol. I just keep a bottle on stand by every morning and do not take the recommended dosage, I take usually 2 BIG sips out of the bottle directly. What I have noticed is that since I started suppressing it with pepto its coming back more frequently my guess is is because I'm stopping the vomiting episode and whatever is needing to be expelled from my body is staying in causing more episodes, they are to the point now where sometimes it happens multiple days in a row if not then its almost every other day if I'm lucky to get a day of relief.SOMEONE HELP
I have had this problem a few times over the past year or so. I usually take a large dose (5 or 6 big pills) of activated charcoal (get it at a natural food store or health store like GNC) as soon as the burps start, and it seems to get things back in order fairly quickly.
I have read posts from others about antacids sometimes working slowly and anti-histamines sometimes working, and I have a theory of what is happening and why charcoal works. I think what is happening is that some contaminant (possibly different contaminants in different individuals) is producing an auto-immune response in the stomach causing the pyloric valve to stay closed, trapping all the food in your stomach. The trapped food rots, becomes noxious, and produces toxins that eventually cause vomiting. In the normal course of the condition one would have to vomit until the original contaminants are removed so that the pyloric valve begins to function again. The charcoal works by acting as a filter in the stomach, absorbing both the toxins and the contaminants, thus allowing the pyloric valve to resume normal functions without the need to vomit. As soon as the valve begins functioning again the noxious burps end because the source has left the stomach. The diarrhea will still come because by the time the burps begin to smell the contents of the stomach are of no use to the rest of the GI tract and are passed through too quickly for the water to be reabsorbed in the colon. However, if you catch and treat the stomach problem early the intensity and duration of the diarrhea can also be reduced.
CAUTION: Activated charcoal should be used only as a remedy, not as a regimen. Prolonged use may cause malnutrition due to its absorbency robbing the body of nutrients from your food.
I am posting this here because I am curious as to whether this will work across the board or if it is just coincidental that it seems to work for me. If it only works for me than my theory is probably incorrect. Please post a reply if you try this and let me know if it works for you.
Consider your ileo-secal valve. It can get stuck open and stuck closed. Closed means all things come back up. Open means diarhea because food goes straight through. Closed can also meann diarhea as things can leak past, but not be open fully.
Both means sulphuric/eggy burps, nausea, excessive bloating and distention. Sometimes there is fever too. Exhaustion and fatigue are normal as well.
Triggers can vary, but my husband calls it my "popcorn valve" as popcorn is a trigger. So are nuts. You might need to give up popcorn and grind nuts down into a meal and put them on things. Viruses can also trigger it. If you have this, you have a weak ileo-secal valve. If something triggers it, a virus, stress, certain foods, you will become more sick and differently than say, the rest of your family.
If you catch it early, you can massage a tender point to the left (your left) of your lower right hip bone. Nux vomica (homeopathic medicince) can help in the early stages as well. Even if you don't catch it early, massaging that point will temporarily bring the bloating down (lie on your stomach also if you can bear it), and I've found it brings a great deal of comfort/relief.
A chiropractor diagosed mine and gave me literature on the condition. I was in for a routine visit, had just taken a shower and was pretty much over my issue, with bloating and all outwards signs gone besides a little nausea. As he was adjusting me, he asked me if I had any "bowel involvement" recently. I said, yes, how can you tell? His answer was really complicated, but he could tell by the adjustmets that he had to give me, and I don't remember it exactly, but he pressed on this point with his elbow. I learned that I could also press on or massage it if I felt an attack coming on.
I just had a virus go through our house and was stupid and ate popcorn yesterday while it was in a weakened state or I think I would be fine. I have not had an issue for years prior to this due to regular monthly chiro. adjustments (different chiro, different state that doesn't even know about my issue specifically). I used to have this occur at least 1-2 x monthly.
I do think a healthy diet makes a huge difference too. I had excessive sugar lately contributing to my weakness. MSG is another trigger of mine.
Well, it is definitely a relief to find that I am not alone. pookish- I have been through a lot of the same tests you have. Unfortunately I have been suffering these attacks since I was around 7, and I thought I had my last one when I was 27, because I went to the ER once AGAIN, but this time they decided it was my appendix instead of blaming it on the flu like usual. I didn't have another sulfur burp or attack until today. I have gone about 2 1/2 years without an attack, so I thought for sure it was behind me with the removal of my appendix. Now I am wondering if my appendix grew back, or I have another issue...gallbladder, pyloric valve, etc. I am SO UPSET and SCARED! I can't take this disgusting burping, gut-bursting bloating, excruciating pain, diarrhea and vomiting anymore! :-( WHAT IS WRONG WITH ALL OF US?!