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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pdilly | @pdilly | Sep 28, 2019

Bless your heart @sickirishlass —canadadrugsonline.com 877-900-3784

I get 200 10mg tablets for about $80. I’m supposed to take 4 a day - an hour before each meal and at bedtime.
But I don’t eat 3 meals a day! I probably eat 10 times a day but never full meals. So I take 1 domperidone in the morning and one at bedtime.

ZeeGee | @fourof5zs | Sep 28, 2019

In reply to @sickirishlass "Where do you send your prescription to in Canada?" + (show)

@sickirishlass

You might want to do as I did if you live in USA. Get a two week script to fill at your local compounding pharmacy as a trial. If you send to Canada you will want a larger supply. I cannot give you a exact price..seems like between $40-$50, but the compounding pharmacy should be able to give you a price before filling... you might speak to them first to make sure they will fill it. Insurance will most likely not pay. Mine did not.. I had just Tricare Standard then. I tried it in 2013 and it did not help and I had a lot of side effects. I would have to hunt up the piece of paper to tell you what they are... I have trouble remembering where I put things or a gremlin moves them.

I took Propulsid at one time .. it worked.. and some people can still get it if their doctor thinks the patient really needs it. It was taken off main market for contributing to heart problems I believe.

I have mild symptoms and do okay with diet and exercise. I have some nerve problem and my doctors do not want me to take Reglan. Reading side effects I don't want to take a chance.

ZeeGee

ken82 | @ken82 | Sep 28, 2019

In reply to @pdilly "Bless your heart @sickirishlass —canadadrugsonline.com 877-900-3784 I get 200 10mg tablets for about $80. I’m supposed..." + (show)

Since that drug is to aid in stomach emptying I would think that since you only take 2...a day.. that you should consider taking the doses 12 hours apart ...taking one an hour before bed (getting more horizontal).. and then 12 hours later when you have something in your stomach. . look up the half life of the drug ., I think I read it was 7.5 hours. But check with your pharmacist or doctor... Doctors in US have little experience with it...

sickirishlass | @sickirishlass | Sep 28, 2019

In reply to @pdilly "Bless your heart @sickirishlass —canadadrugsonline.com 877-900-3784 I get 200 10mg tablets for about $80. I’m supposed..." + (show)

Ty very much, will call on Monday. Ty ty ty 🤗

pdilly | @pdilly | Sep 28, 2019

@fourof5zs I remember in a previous post you said you were able to get domperidone from a compounding pharmacy which was amazing to me. I’m glad you said to check with such a place first to make sure they would fill the prescription because the compounding pharmacies where I live will not. (since it is not FDA approved.)

@ken82 I agree with you and I do take the domperidone twice a day about 12 hours apart! Thank you!

@sickirishlass Before you and your gastroenterologist decide you can try this y’all need to make sure your heart health is good. You may have read on my earlier post that I had to go to a cardiologist first to get a stamp of approval!
If you get to try it, I hope it works as well for you as it has for me. I don’t ever want another monster in my belly! The domperidone and following a Gastroparesis eating plan is working for me.

downtowntiger | @downtowntiger | Sep 28, 2019

I had the LINX procedure, hernia and diaphragm repair surgery six weeks ago. I take domperidone twice a day. Other than the expected dysphasia, I can eat without pain. I don’t do spicy, but I can have fish and chicken, pasta, cheese and any soft food. Off my Dexilant-hallelujah! I discovered something very interesting-I took Metformin for insulin resistance. I found out it is very harsh on your digestive system and can cause delayed gastric emptying. I took it for 8 years before my gastroparesis was diagnosed and have had horrible reflux for four years. I think the Metformin started my stomach issues. Hang in there and keep searching for answers. Blessings to all!

ZeeGee | @fourof5zs | Sep 28, 2019

In reply to @fourof5zs "@sickirishlass You might want to do as I did if you live in USA. Get a..." + (show)

I found my list of side effects of Domperidone.. first place I looked 😀. I flunked penmanship.

I guess it is illegal, but has exceptions.
On how to apply to get it: https://www.fda.gov/drugs/investigational-new-drug-ind-application/how-request-domperidone-expanded-access-use

More about the drug... list of drug interactions.. list is long.
https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/description/drg-20063481

ZeeGee | @fourof5zs | Sep 28, 2019

In reply to @downtowntiger "I had the LINX procedure, hernia and diaphragm repair surgery six weeks ago. I take domperidone..." + (show)

@downtowntiger
I have noticed since my husband has been in Metformin he has had more stomach issues.... he did not start the med until after surgery. He had a pancreatic tumor removed in 2009 and lost about half of his pancreas.... yes, cancer. Thankfully cancer free. I keep telling him he needs to go to a endocrinologist. They might help him or even make an appointment at the Mayo Clinic.. with whatever department they thought most suitable.

He is stubborn.. and added complication of being caregivers to my 91 year old mama. We tried putting her in a nursing home, but they did not even order her pain med patches. We had to bring one from home. They kept her water from her and her call button. The other nursing homes around here are no better. Tried to get her in hospice and they said not yet.

downtowntiger | @downtowntiger | Sep 28, 2019

@fourof5zs I hate to hear that, but thank God, your husband is cancer free. I truly believe a Metformin caused my gastroparesis and made my GERD way worse. Unless he is diabetic and must be on Metformin, it would be wise to talk to an endocrinologist. I had GERD surgery, but my gastroparesis is 80% better. Too bad.....it kept my weight down. Best of luck to you. My husband’s sweet mom is 93......it is hard.