Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Gastroparesis treatments

Discussion in 'General Treatment' started by Sushi, Dec 15, 2010.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have friends with gastroparesis and was thinking of mentioning that to you--but someone beat me to it!

    I know of one person who has an exceptionally bad gastroparesis deal going on and hers started after getting way too many vaccinations all at once when she volunteered as a tsunami relief worker. She went so far as being tested with a temporary vagus nerve stimulator (think wires coming out of her mouth for 3 days:eek:) and all her symptoms--gastroparesis and the rest of them--disappeared.

    The next step would have been surgery to implant a device but she balked as it is risky surgery. What the experiment did do was pinpoint the vagus nerve as the source of most of her symptoms.

    The ANS specialist I used to see also pointed to the vagus nerve as a culprit for me--after analyzing my tilt table test.

    How to deal with the vagus nerve is a complicated question. Seems like, for the moment, diet stuff would be the safest route to deal with motility. Another friend has some success with psyllium after every meal. Helps make the train chug along in the right direction.

    Sushi
     
  2. mojoey

    mojoey Senior Member

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    Jenbooks, Dannybex, and Sushi were kind enough to help me figure out that I (probably) have gastroparesis, so I wanted to start a thread on this. Mainly what type of treatments people have done for this, both allopathic & alternative, and what ideas those of us with this can pursue.
     
  3. mojoey

    mojoey Senior Member

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    This is basically what vagus nerve stimulation involves: http://www.riversideonline.com/source/images/image_popup/mh7_vagalnerve.jpg

    Yes it is an invasive procedure. Apparently some studies have shown that electroacupuncture is helpful, and there are some companies working on wearable vagus nerve stimulators so that surgery isn't necessary.

    Besides that, ginger is supposedly helpful for stimulating gastric movement but it's been useless for me. So far the only thing that has helped quite a bit is electrostimulation (funny enough, this was unintended treatment via electrodermal evaluations--they send electromagnetic signals to your body to receive input), and eating smaller more frequent meals. And of course, being in a great environment in Santa Cruz, but I'll leave that discussion for the mold avoidance thread.
     
  4. mojoey

    mojoey Senior Member

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    According to Dr. Benjamin Natelson, "The vagus nerve...carries information from the brain to the heart and stomach (HA) and intestines (HA) and from those organs back up to the brain." He and his wife (Dr. Gudrun Lange) did a clinical trial on Vagus nerve stimulation for fibromyalgia because it was found to reduce brain sensitization. I'll shoot him and email to see if he found any differences in gut symptoms.
     
  5. Francelle

    Francelle Senior Member

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    When I was diagnosed with Gastroparesis last year after a GES (Gastric Emptying Scintigraphy), my GI Professor said that it is not always known whether it is the Vagus nerve which is responsible for the GP or a problem with the ICC's (Interstitial Cells of Cajal). Essentially ICC's are a relatively new area of research and treatment for either cause at this stage, is similar.

    I am on a traditional regimen of Domperidone (Motilium) which is approved in Australia. I find this to be very effective. I did try Cisapride (Prepulsid) which one can get here with special Health Department approval but I found it to be no more effective than Domperidone. Considering its cost and difficulty obtaining Cisapride approval I figured for the minimal extra effectiveness I was getting from it that I would stay with Domperidone.

    My GI Prof also offered me the surgical option of the pump made by Enterra. I said I would wait and see how the pharmacological and dietary modifications (liquid diet) succeeded and then I would decide. Paramount in this decision has also been to monitor my weight loss. Had my weight kept plummeting as it was initially, then I would have had to consider the pump. Fortunately my weight has stabilised with some small gains, therefore for the moment at least I'm leaving surgical options alone.

    Have you been formally diagnosed with GP, Mojoey? If so, are you on pharmacological treatment?
     
  6. mojoey

    mojoey Senior Member

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    Hey Francelle,

    Thanks for chipping in here. I'm glad you were able to avoid the surgery, high-risk or not.

    I have not been formally diagnosed yet because the idea was just presented to me a few days ago. I will look for a GI doc once I move to Vegas in a few weeks.

     
  7. mojoey

    mojoey Senior Member

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    Dr. Natelson told me he didn't notice anything with gut improvement in his trial
     
  8. Wayne

    Wayne Senior Member

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    Cranial Nerves - Vagus Nerve - Digestion - Atlas Profilax

    [​IMG] Originally Posted by jenbooks [​IMG]
    I did not know gastroparesis was due to the vagus nerve. I'd look at an anatomy chart and find acupressure points to stimulate or calm the vagus nerve and try to self treat.

    Hi All,

    Jenbooks, I don't know if you're familiar with some of the improvements I experienced after I got an atlas profilax treatment. I posted the following two paragraphs (below) on the ProHealth board, and think it relates to this discussion about the vagus nerve and/or gastroparesis.

    Joey, I seem to remember you also did the atlas profilax, but did not notice any significant benefits. So it's likely your vagus nerve was not impinged the way mine had been. Goes to show how we're all so different.

    Best, Wayne
    ...............................

    Posted on ProHealth 2/3/08

    Last summer, I received an Atlas Profilax treatment and posted fairly extensively about my experience on a thread entitled Atlas Profilax Worked / is Working Very Well for Me. Real briefly, Atlas Profilax is a one-time treatment that permanantly aligns the uppermost vertabra called the Atlas.

    One area that I haven't posted on is how I have come to believe this treatment released a lot of compression on my vagus nerve, and perhaps other cranial nerves as well. There's a bit of a story to this, so if you'll bear with me......

    The full story and full thread is at this link:

    Cranial Nerves - Vagus Nerve - Digestion - Atlas Profilax

    One of my last posts on this thread was a comprehensive list of all the benefits I had experienced since doing the AP treatment. Many of these benefits I believe can easily be associated with the increased nerve energy being distributed to my body via the vagus nerve. ​
     
  9. CBS

    CBS Senior Member

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    SIBO and gastroparesis

    My two cents:

    Gastroparesis and SIBO (in many cases) are both thought to be caused by dysfunction of (damage to) of the vagus nerve.

    I've had significant improvement in SIBO symptoms with Xifaxan (I do need to treat it regularly, about every 3-5 months right now). The relief has been profound.

    Here's a link to a number of posts I make on Xifaxan for SIBO: http://forums.aboutmecfs.org/showth...Antibiotic-Query&p=93347&viewfull=1#post93347

    Lastly, the Xifaxan does little to improve motility but it treats my primary result of dysmotility, SIBO. Small meals, avoiding PEM as the neural issues are much worse if I am fatigued, etc. seem to be the best way of dealing more directly with the lack of motility.
     
  10. mojoey

    mojoey Senior Member

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    Makes sense CBS.

    How did you test for SIBO btw?
     
  11. CBS

    CBS Senior Member

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    Before treatment I was diagnosed via Upper GI endoscopy duodenal fluid sample as well as a positive hydrogen breath test. A breath test post treatment showed a sustained hydrogen level of zero. Symptoms cleared within 2-3 days of starting Xifaxan.

    Hydrogen breath test - http://www.medicinenet.com/hydrogen_breath_test/article.htm

    I don't have celiac disease but this article describes the procedure: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2643326/

    I just came across this summary: http://advancedendocenter.com/small-intestinal-bacterial-overgrowth.php
     
  12. mojoey

    mojoey Senior Member

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    Thanks CBS
     
  13. sleepy237

    sleepy237 Senior Member

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    Hell

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