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Pots And Gi Abnormalities: New Article


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I just saw a new article by the Chelimsky team in Cleveland--there's a summary on pubmed at http://www.ncbi.nlm.nih.gov/pubmed/20479685. They did a procedure called electrogastrography (EGG) on patients who were doing a tilt table test. The EGG measures electrical activity in the stomach. (My son has never had the test, so I don't know exactly how that works--I'm just relying on the article for this.) The study showed a very significant different between POTS and non-POTS patients: for non-POTS patients, their stomach electrical activity became more normal with upright tilt. In other words, their GI systems worked better while upright. For POTS patients, their stomach electric signals became significantly more abnormal with upright tilt. The team hypothesizes a number of ways how this could explain the nausea, abdominal pain and other GI symptoms that POTS patients experience.

No treatment recommendations from this article, but it's yet another documentation of the realness of POTS symptoms--and hopefully will lead to further understanding of the disorder.

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My son had a variation of this test done 5 years ago at Johns Hopkins. He had a test called an antroduodenal manometry, which measures pressures in the GI tract DURING his TTT. An antroduodenal manometry is used to DX motility problems. The patient swallows a bundle of sensors, which are placed in the esophagus, stomach, and small bowel (verified by X-ray) They remain in the hospital where their pressures are measured for 24 hours. During Mack's TTT, his pressures showed severe retrograde movement- he actually vomited with the gear in place, as he fainted. The manometry also shows whether the problem is muscular or neural in nature.

There is definitely a connection between GI symptoms and autonomic dysfunction. Thanks for sharing the article. Interesting to see that other hospitals are doing this too.

Julie

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Mack's Mom,

So, did your son's result indicate "muscular" or "neural" or both? He takes something for this, right?

Almost everyone with autonomic dysfunction has neural dsymotility. The GI tract is just one more component of the autonomic nervous system that isn't working.

Mack takes eyrthromycin as a GI prokinetic to help move food along his GI tract. It works by slightly irritating the stomach & small intestine into emptying a bit more quickly. I also took eyrthomycin for a while. It worked wonders. It turns nausea :) into sweet hunger- Yay!

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My son had the antroduodenal test done in March to check to see if the contractions in the intestines were in sync. They were, so that was good news that he didn't have further nerve damage in the intestines. He does have gastroparesis. After this test, they ruled out my son's nausea being GI related and have determined that it is neurological. (Possibly part of the migraine process).

He did have difficulty with the duodenal test. After the placed the probe down his throat, through the stomach and into the intestines, when he was coming to-out of the anestectic- he threw up. So the next day when they went to do the test, the probe was no longer in the intestines, but just in the stomach. So we had to stay in Cleveland an extra day and repeat the whole procedure. The second time, they gave him extra anti nausea medicine so he didn't throw up, so the probe stayed in place.

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My son had the antroduodenal test done in March to check to see if the contractions in the intestines were in sync. They were, so that was good news that he didn't have further nerve damage in the intestines. He does have gastroparesis. After this test, they ruled out my son's nausea being GI related and have determined that it is neurological. (Possibly part of the migraine process).

He did have difficulty with the duodenal test. After the placed the probe down his throat, through the stomach and into the intestines, when he was coming to-out of the anestectic- he threw up. So the next day when they went to do the test, the probe was no longer in the intestines, but just in the stomach. So we had to stay in Cleveland an extra day and repeat the whole procedure. The second time, they gave him extra anti nausea medicine so he didn't throw up, so the probe stayed in place.

That sounds awful, poor baby. Mack threw up too (during the TTT), but at that point- they already had 24 hours of readings. At Hopkins, they do an X-ray during recovery to ensure the proper placement of the probes. Too bad they didn't check before putting your son through that torture :blink:

Christy, I have a question about something. You say your son has gastroparesis (but not small bowel dysmotility.) Yet, his doctors don't think his nausea is from his GI tract?????? Hello!!!!!! Nausea is the most common symptom of gastroparesis. I know nausea can also be a part of the migraine process- so he may be experiencing the nausea from both the gastroparesis & migraines. Out of curiosity, what meds does he take?

I know it's hard to see him suffer.

Hugs-

Julie

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My son had the antroduodenal test done in March to check to see if the contractions in the intestines were in sync. They were, so that was good news that he didn't have further nerve damage in the intestines. He does have gastroparesis. After this test, they ruled out my son's nausea being GI related and have determined that it is neurological. (Possibly part of the migraine process).

He did have difficulty with the duodenal test. After the placed the probe down his throat, through the stomach and into the intestines, when he was coming to-out of the anestectic- he threw up. So the next day when they went to do the test, the probe was no longer in the intestines, but just in the stomach. So we had to stay in Cleveland an extra day and repeat the whole procedure. The second time, they gave him extra anti nausea medicine so he didn't throw up, so the probe stayed in place.

That sounds awful, poor baby. Mack threw up too (during the TTT), but at that point- they already had 24 hours of readings. At Hopkins, they do an X-ray during recovery to ensure the proper placement of the probes. Too bad they didn't check before putting your son through that torture :blink:

Christy, I have a question about something. You say your son has gastroparesis (but not small bowel dysmotility.) Yet, his doctors don't think his nausea is from his GI tract?????? Hello!!!!!! Nausea is the most common symptom of gastroparesis. I know nausea can also be a part of the migraine process- so he may be experiencing the nausea from both the gastroparesis & migraines. Out of curiosity, what meds does he take?

I know it's hard to see him suffer.

Hugs-

Julie

He takes Erythrocin(sp) twice a day. I guess because he is on the erythrocin for the gastroparesis and the small bowel works fine, (they also have done a capsule endoscopy, colonoscopy and endoscopy), they have ruled the nausea out as a GI problem.

He used to experience awful migraines that would land him in the emergency room a couple of times a year, but they have stopped. They believe he might still be having them, but they are silent. Migraines run in my family-bad. We go back in July for a follow up. He has gotten better, still sick daily, but not all day and night. He is up and moving about the house around noon.

The terrible thing about his gastroparesis is, his original Ped. GI doctor wouldn't even test him for it. He said "It doesn't usually happen in kids" and left it at that. Even after his POTS diagnosis and at the request from the Cleveland doctors, our St Louis GI wouldn't run it. So we went around him and the hospital accepted an order to run the test from an out of state doctor. I wrote the St Louis GI a letter how disappointed I was in his treatment of my son.

I am just hoping he can return to school in the fall. He has not been since Feb 09. Even if it is just for a class or two, so he can reconnect with some friends.

Christy

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It would be great if all dysautonomia patients could have their GI motility testing done while upright. I had my TTT at Mayo Rochester in 1/09. The next day I had gastric, intestinal and colonic motility tests (where you eat a radioactive egg and they monitor its progress through your GI tract). At the time, I was in a major POTS flare due to just travelling from Oregon to MN and my intestinal motility was extremely slow, so slow that the Mayo neurologist thought I might actually have an obstruction in my small intestine. So I had a barium swallow the next week, lying down of course, and my POTS flare had settled down. The radiologist didn't see any obstruction, but also noted that my motility was perfectly normal. So the Mayo neurologist said that my initial delayed motility might have just been "for physiological reasons and not because of the occurence of visceral neuropathy." I think we'd have more accurate testing if the EEG during the TTT were standard for those of us who have GI issues along with our dysautonomia.

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It would be great if all dysautonomia patients could have their GI motility testing done while upright. I had my TTT at Mayo Rochester in 1/09. The next day I had gastric, intestinal and colonic motility tests (where you eat a radioactive egg and they monitor its progress through your GI tract). At the time, I was in a major POTS flare due to just travelling from Oregon to MN and my intestinal motility was extremely slow, so slow that the Mayo neurologist thought I might actually have an obstruction in my small intestine. So I had a barium swallow the next week, lying down of course, and my POTS flare had settled down. The radiologist didn't see any obstruction, but also noted that my motility was perfectly normal. So the Mayo neurologist said that my initial delayed motility might have just been "for physiological reasons and not because of the occurence of visceral neuropathy." I think we'd have more accurate testing if the EEG during the TTT were standard for those of us who have GI issues along with our dysautonomia.

When my son had the gastric emptying test done(4 hours), they wouldn't let him lay down. They told him he had to sit or stand, and he was feeling horrible at the time. It was very hard to stay upright. Plus, he hates any heat on his stomach, and the machine he had to stand in front of put off a lot of heat making him feel even sicker.

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  • 10 months later...

bruc-

I think by it's very definition, "myopathic" is a muscle dysfunction, not a nerve dysfunction. Could a neuropathy cause a myopathy? Probably not, but your doc would be better suited to answer. Could someone have both? Probably.

From what I understand a muscle fiber degeneration is what causes a myopathy, while a neuropathy is caused by neural cell damage. Often the end result is similar, BUT achieved in different ways.

Julie

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