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

By the way the domperidone cost me $80 for 200 10mg tablets. I’m supposed to take them 4 times a day but I only take it twice a day — before breakfast and at bedtime.
So that’s a 100 day supply for me.

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@pdilly

No bad side effects at all with domperidone. I have to get it from Canada because the FDA has not approved it. And I think it must be helping me. Of course I’m sure the extremely low fiber diet helps too.

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Domperidone was a Godsend for me for a couple years but now its not very effective. Does still keep my all liquid diet down.

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I did that in the beginning as well.

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@mayorocks

What does CIP stand for?

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CIP stands for chronic intestinal pseudo-obstruction. It is a rare potentially disabling disorder characterized by abnormalities affecting involuntary coordinated muscular contractions of the gastrointestinal tract.

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@pdilly

By the way the domperidone cost me $80 for 200 10mg tablets. I’m supposed to take them 4 times a day but I only take it twice a day — before breakfast and at bedtime.
So that’s a 100 day supply for me.

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I don't know if my doctor will put me on domperidone but if he does, can I get the address in Canada where you order yours from?

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@beanglow

I don't know if my doctor will put me on domperidone but if he does, can I get the address in Canada where you order yours from?

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@beanglow I did not do well with domperidone.. I cannot remember which side effects I had now. I have them written down somewhere. I got my prescription filled at a local compounding pharmacy. I live in Albany, GA. I just got a couple of weeks worth or so to see if it helped and I could tolerate it. It did not help me nor could I tolerate. I cannot remember pricing.

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@fourof5zs

@beanglow I did not do well with domperidone.. I cannot remember which side effects I had now. I have them written down somewhere. I got my prescription filled at a local compounding pharmacy. I live in Albany, GA. I just got a couple of weeks worth or so to see if it helped and I could tolerate it. It did not help me nor could I tolerate. I cannot remember pricing.

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Thanks for the reply. Are you on any medication now that works for you?

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@beanglow

Thanks for the reply. Are you on any medication now that works for you?

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@beanglow I just do the best I can with diet. Hard to do… I also have diverticulosis which requires high fiber. I have to do soft foods because of swallowing problems. So I try to balance it all out… ugh! When first diagnosed I did propulsid which was taken off the market shortly after I started it. I think it available now under certain criteria.

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How did you do on the Propulsid? The only thing I can tolerate for nutrition is Boost and I still have symptoms.

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@mayorocks

I haven't tried any meds yet and won't unless I get worse. You are already worse it sounds like. Reglan and domperidone are the only 2 I think. Both have the possiblity of severe side effects. The first, if I remember right, is tardive diskinesia, uncontrollable twitches or other movements. they may go away if stop meds. But not always. Same is true for many psychotrophic meds. The second med is possible to preceed a heart problem, can be very serious. In USA you have to get it from a dr. who will sign a bunch of paperwork as its experimental or somesuch designation here. Other countries its approved. Think insurance won't cover it and so it is pay out of pocket so naturally the drug companies charge a lot. Not sure price. Also read somewhere that must go in to dr. every 2 or 3 mo. the first yr. or something similar. Go to drugs.com and type them in and read prescribing information on each. Some of my spelling may be a little off.

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Thanks for the information.

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@pdilly

By the way the domperidone cost me $80 for 200 10mg tablets. I’m supposed to take them 4 times a day but I only take it twice a day — before breakfast and at bedtime.
So that’s a 100 day supply for me.

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Thanks for the reply. My doctor hasn't even mentioned it. I'm getting very discouraged.

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@beanglow Sorry for delay. I got Domperidone thru http://www.canadadrugsonline.com. I’m so surprised that someone else said they got it in Albany GA. My doc said it is not available in the USA because FDA won’t approve it.
When he handed me the prescription he handed me a list of several foreign pharmacies to choose from and I chose Canadadrugsonline.
Your doc may be reluctant to prescribe it because it’s not FDA approved. I call it my illegal drug!

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It’s used worldwide (except in the USA) and it’s over the counter in many countries.

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@lelia

Glad you will still be in touch with him.

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I'm getting discouraged because nothing has worked so far. I had to miss another family event today. I don't know if there is much that can be done except for staying on a liquid diet.

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@beanglow

How did you do on the Propulsid? The only thing I can tolerate for nutrition is Boost and I still have symptoms.

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@beanglow So many years ago … but it helped. I took it for so many days and then off for so many days. I was only on it for a few months. I have nerve problems so my doctors do not think I would do well with Reglan. I hooe I got the name right in that one. I am exhausted lately and my mind isn't working on all cylinders. I had to put my mom in a nursing home and it has been very emotional time.

On the Domperidone… My doctor at Mayo in Jacksonville wrote a prescription and told me to take it to a compounding pharmacy. That was in 2013, so the price has gone from my mind. You might ask your doctor about it or if you have a pharmacy that does compounding ask there about it.

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