Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March - which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet - pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn't move through - then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling - It seems to work by drinking just water /gator aid for at least a day. I just don't know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn't seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach - I never seem to have stomach pain - Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition - what are your symtoms and how are you managing? Thanks

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Profile picture for ken82 @ken82

@pdilly @1950 @fourof5zs ... When the local GI doc told me about that drug (Domperidone) that was not FDA approved, I first called a friend who was a radiologist in Sweden.. she said, "don't take that"... so I asked my Primary Care Physician to refer me to Mayo MN... That was a life changing day in my life.. 6 years ago and now doing pretty good even though I am 84..
"Domperidone has been banned in the United States for years because of fatal cardiac arrhythmias among cancer patients who had been prescribed the drug to prevent nausea and vomiting. ... "Unfortunately the different uses of the medication have been tied into the one outcome - fatal cardiac arrhythmia." Nov 11, 2014..
https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/side-effects/drg-20063481?p=1#:~:text=Domperidone%20is%20a%20medicine%20that,immediate%20supervision%20of%20your%20doctor.

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Thank you for the article @ken82. My gastroenterologist thoroughly researched domperidone before putting me on it. He also had me make an appointment with a cardiologist to make sure he approved as well before giving me the prescription. (I don’t have any heart issues.)

Here is the statement from the FDA website about why they issued a warning about domperidone in 2004 — “FDA took this action because of the concern about the potential serious health risks associated with the use of domperidone by lactating women to enhance breast milk production.” That’s definitely not an issue for me as I approach age 70 — lol.

Since it has helped me so much with stomach emptying with no side effects, I’m very comfortable taking it. It’s also comforting to know that it’s available throughout the rest of the world — appears that only the USA has not approved it. In some countries it requires a prescription but in most countries it’s over the counter.

What is the source of the 2 quotations you shared. They weren’t included in the Mayo Clinic link so I just wanted to read more about those statements made November 11, 2014. Thanks!

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Profile picture for Mary @1950 @1950

What is domperidone?

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@1950 Domperidone is a prescription motility aid drug to help move the food from stomach into the intestine faster.

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Profile picture for pdilly @pdilly

Thank you for the article @ken82. My gastroenterologist thoroughly researched domperidone before putting me on it. He also had me make an appointment with a cardiologist to make sure he approved as well before giving me the prescription. (I don’t have any heart issues.)

Here is the statement from the FDA website about why they issued a warning about domperidone in 2004 — “FDA took this action because of the concern about the potential serious health risks associated with the use of domperidone by lactating women to enhance breast milk production.” That’s definitely not an issue for me as I approach age 70 — lol.

Since it has helped me so much with stomach emptying with no side effects, I’m very comfortable taking it. It’s also comforting to know that it’s available throughout the rest of the world — appears that only the USA has not approved it. In some countries it requires a prescription but in most countries it’s over the counter.

What is the source of the 2 quotations you shared. They weren’t included in the Mayo Clinic link so I just wanted to read more about those statements made November 11, 2014. Thanks!

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@pdilly Domperidone is available in Canada in prescription. I have had no ill effects or interactions with it. I used to take it at bed time any night I had had a heavy meal but for the past few years I have stopped eating from 9:00 p.m. through the night so I have not needed it.

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Profile picture for brandywine8875 @brandywine8875

Hello,
I feel for you. I'm going through the same thing for years I have been hospitalized, multiple surgeries on my stomach and colon with no answers.
I was diagnosed 2 weeks ago.
I do exactly the same things as you. I vomit after every meal and my food just sits on my stomach and ferments, then I get extremely nauseas.
I had a gastric emptying study by they couldn't complete it bc I threw up the oatmeal.
I have had 15 colonoscopies, 8 endoscopies all in the last 2 years.
I'm am being sent to the Mayo clinic to see what they can do.
Please reply back to me..
Thanks

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Please let us know what you find out at Mayo.

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Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

Domperidone has too many side effects, warnings and interactions with other drugs for me to be comfortable taking it - arrhythmias specifically.

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Too many interactions with my MCTD drugs.

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Profile picture for ken82 @ken82

@pdilly @1950 @fourof5zs ... When the local GI doc told me about that drug (Domperidone) that was not FDA approved, I first called a friend who was a radiologist in Sweden.. she said, "don't take that"... so I asked my Primary Care Physician to refer me to Mayo MN... That was a life changing day in my life.. 6 years ago and now doing pretty good even though I am 84..
"Domperidone has been banned in the United States for years because of fatal cardiac arrhythmias among cancer patients who had been prescribed the drug to prevent nausea and vomiting. ... "Unfortunately the different uses of the medication have been tied into the one outcome - fatal cardiac arrhythmia." Nov 11, 2014..
https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/side-effects/drg-20063481?p=1#:~:text=Domperidone%20is%20a%20medicine%20that,immediate%20supervision%20of%20your%20doctor.

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Thanks for the info!!

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Profile picture for rashida @rashida

@pdilly Domperidone is available in Canada in prescription. I have had no ill effects or interactions with it. I used to take it at bed time any night I had had a heavy meal but for the past few years I have stopped eating from 9:00 p.m. through the night so I have not needed it.

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Yes! I get it from Canada too. I take it in the morning and at bedtime — have been on it for about 2 years now and no more monsters in my belly! (I had a bezoar one time - I hate to say that word!)

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Profile picture for ZeeGee @fourof5zs

@pdilly @annieoh ,

I tried domperidone in 2013 and I had several side effects.. I don't remember what they were now and not sure where the paper is I wrote them on. I got the prescription from a doctor at the Mayo in Jacksonville. I had it filled at a local compounding pharmacy. My insurance did not pay for it and I don't remember the cost. Worth checking at local compounding pharmacy for first try.. I got two week's worth. I think I made it a week and a half before I said I'd rather put up with the disease than the medication. It works for many people though.

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I am going to mayo in Jacksonville next month to see Dr. lacy he is supposed to be one of the best GI's in the country. I was just researching domperidone and it says it is no longer available in the US. That's crazy, if it works that well then why can't they make it in the US and how would we get it?

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Profile picture for brandywine8875 @brandywine8875

I am going to mayo in Jacksonville next month to see Dr. lacy he is supposed to be one of the best GI's in the country. I was just researching domperidone and it says it is no longer available in the US. That's crazy, if it works that well then why can't they make it in the US and how would we get it?

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@brandywine .. terrible but I cannot remember the gastroenterologist's name I saw back in 2013 when was prescribed domperidone. I am now under the car of Dr Frances and her NP Lois Hemminger. .. my local GI refused to do endoscopies on me because my surgery repair was so extensive... he still does my colonoscopies. I'm glad to have a doctor admit that something is out of his league.

When I was prescribed domperidone I was told which compounding pharmacy to take it to in my town. You might call a compounding pharmacy to see if they compound it. I am including a link to the fda site that says this this information was accurate up until February this year... I would think if it had changed since then they would alter the information.

I think.. but not positive.. for a two week supply back then it was around $40. .. probably increased a lot since 2013. We had Tricare Standard then and it did not pay anything that I recall. My husband is retired Army. Now that we are Seniors we have Tricare for Life and Medicare. .. still probably no payment for the medication.
https://www.fda.gov/drugs/investigational-new-drug-ind-application/how-request-domperidone-expanded-access-use

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sorry to jump in but not feeling like reading all right now and maybe someone can put this where it belongs; ibs-d for years, c.diff 2018, fecal incontinence and last years ear issues; tinnitus, pain ear area and slight dizziness and a couple of bad atttacks which they are checking for vertigo and meniers... so woke up feeling as usual but not too bad, then of course 3 x pasty b.m.s (f.i.) and took half Imodium for diarrhea and then felt head a bit off.... wondering if the one Imodium a day is causing any head issues and then checking read this:

It happens when stomach acid flows up into your esophagus, which is the pipe connecting your mouth to your stomach. Occasionally, stomach acid reaches the tubes leading to the inner ear. This may irritate the inner ear and cause dizziness in some people

Have never read anything like this before! Thanks J. Honestly, it seems every body part is connected to our ears! Tinnitus of course now out of control too..... bowel involved???

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