1. < Digestive Health
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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 peggyjean
peggyjean | @peggyjean | Nov 26, 2022
In reply to @mikejjb123 "I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant..." + (show)
Profile picture for mikejjb123 @mikejjb123

I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant at night before bedtime. Been doing this about a month and I now have nausea for about 3 hours or so when I wake up in the morning. Try to quit eating by 8 pm ( a small snack usually) and not fresh fruit with skins. Any ideas to bring the nausea further under control? Seeing a nutritionist in a couple weeks. Thanks.

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Make sure nutritionist knows something about gastroparesis….. the one I went to had pregnant brain & I knew more than she did! I bought a book on Amazon about gastroparesis …..I’ll look it up in my photos & send you a copy…. Not home at the moment…. Website’s & FB has been a big help to me…. I was diagnosed Oct 2020.

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Profile picture for peggyjean
peggyjean | @peggyjean | Nov 26, 2022
In reply to @mikejjb123 "I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant..." + (show)
Profile picture for mikejjb123 @mikejjb123

I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant at night before bedtime. Been doing this about a month and I now have nausea for about 3 hours or so when I wake up in the morning. Try to quit eating by 8 pm ( a small snack usually) and not fresh fruit with skins. Any ideas to bring the nausea further under control? Seeing a nutritionist in a couple weeks. Thanks.

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This is the book….Living With Gastroparesis

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t98 | @t98 | Nov 26, 2022
In reply to @mikejjb123 "Do you know what some of the symptoms would be ? thanks again" + (show)
Profile picture for mikejjb123 @mikejjb123

Do you know what some of the symptoms would be ? thanks again

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The best way to know if you have diabetes or prediabetes is to do a blood test to test your blood sugar. Knowing your blood sugar level BEFORE your meeting with the nutritionist would be extremely helpful, in order to know how to treat what you have. I guess it's best to do the test after a nighttime fast
(https://www.cdc.gov/diabetes/basics/index.html)

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brendaharvey | @brendaharvey | Nov 26, 2022
In reply to @mikejjb123 "Do you know what some of the symptoms would be ? thanks again" + (show)
Profile picture for mikejjb123 @mikejjb123

Do you know what some of the symptoms would be ? thanks again

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I have Gastroparesis and am not diabetic. Mine is rare.
Almost everyone who has this is diabetic. Don’t know how I was unlucky enough to have this monster of a condition!!

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3 replies
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brendaharvey | @brendaharvey | Nov 26, 2022
In reply to @willows "Seems to me if you are having nausea in the morning you might have slipped down..." + (show)
Profile picture for willows @willows

Seems to me if you are having nausea in the morning you might have slipped down off your wedge pillow or too low on it to prevent esophagus reflux. This happened to me. The other problem I had was that I was continuing to suffer from slow stomach emptying so last night’s food was still in my stomach not digested so that gave me nausea in the morning. I tried raising the head of my bed by putting books under it and that helped a lot, as well as a change in prescriptions. I now take domperidone (the biggest help) as well as Previcid and sucrafat.

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Where do you get the sucrafat?
I had never heard of it.
Domperidone, is this prescription?

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1 reply
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mikejjb123 | @mikejjb123 | Nov 26, 2022
In reply to @mikejjb123 "I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant..." + (show)
Profile picture for mikejjb123 @mikejjb123

I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant at night before bedtime. Been doing this about a month and I now have nausea for about 3 hours or so when I wake up in the morning. Try to quit eating by 8 pm ( a small snack usually) and not fresh fruit with skins. Any ideas to bring the nausea further under control? Seeing a nutritionist in a couple weeks. Thanks.

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Thanks all for the advice! Much appreciated. Mike

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willows | @willows | Nov 26, 2022
In reply to @brendaharvey "Where do you get the sucrafat? I had never heard of it. Domperidone, is this prescription?" + (show)
Profile picture for brendaharvey @brendaharvey

Where do you get the sucrafat?
I had never heard of it.
Domperidone, is this prescription?

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Sucralfate is a prescription medication. It coats the stomach and protects it from stomach acids. Often used to treat ulcers or irritated stomach and esophagus. Domperidone is also a prescription medication. It is a drug that signals the stomach that there is food coming in half an hour and it must act to digest this food. This medication may come with potential side effects. I am not sure that you can get it in the U.S. at one point it was only available in Canada. That may have changed. It’s worthwhile looking into because for me this medication has changed my life.

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1 reply
Profile picture for brendaharvey
brendaharvey | @brendaharvey | Nov 26, 2022
In reply to @willows "Sucralfate is a prescription medication. It coats the stomach and protects it from stomach acids. Often..." + (show)
Profile picture for willows @willows

Sucralfate is a prescription medication. It coats the stomach and protects it from stomach acids. Often used to treat ulcers or irritated stomach and esophagus. Domperidone is also a prescription medication. It is a drug that signals the stomach that there is food coming in half an hour and it must act to digest this food. This medication may come with potential side effects. I am not sure that you can get it in the U.S. at one point it was only available in Canada. That may have changed. It’s worthwhile looking into because for me this medication has changed my life.

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Thank you so much for this information!
I will check with my doctor to see if I can use these.

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catmomma | @catmomma | Nov 27, 2022
In reply to @mikejjb123 "I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant..." + (show)
Profile picture for mikejjb123 @mikejjb123

I have Gastroparesis and doctor told me to use a wedge pillow and take my dexilant at night before bedtime. Been doing this about a month and I now have nausea for about 3 hours or so when I wake up in the morning. Try to quit eating by 8 pm ( a small snack usually) and not fresh fruit with skins. Any ideas to bring the nausea further under control? Seeing a nutritionist in a couple weeks. Thanks.

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Hi,

I've had gastroparesis for a number of years, dating back to at least 2012. But I remember symptoms long before then (2012 was, I think my first hospitalization. I gravitate to foods that made me feel better-smoothies, etc.

As for meds, I'm running out of options. There's motegrity, which the insurance doesn't want to cover, or domperidone which none of the providers want to write for (they don't do out of the country). Many of the meds cause extrapyramidal side effects and I had to stop taking them. After a traumatic brain injury, weed began causing seizures, time to stop'!

Due to scar tissue the gastric stimulator isn't really an option either. The botox is an option. My GI here at home is putting in an expedtited referral back to Mayo in Rochester.

Not sure what to think, just trying to keep it positive.

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1 reply
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tsch | @tsch | Nov 27, 2022
In reply to @brendaharvey "I have Gastroparesis and am not diabetic. Mine is rare. Almost everyone who has this is..." + (show)
Profile picture for brendaharvey @brendaharvey

I have Gastroparesis and am not diabetic. Mine is rare.
Almost everyone who has this is diabetic. Don’t know how I was unlucky enough to have this monster of a condition!!

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My daughter got it after a bad viral infection, she is not diabetic either

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