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Chrissy

Gastroparesis And/or Acid Reflux That Doesn't Respond To Meds

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Hi. I was diagnosed with GERD in January 2006 in addition to gastroparesis. I've been on everything from prescription prilosec, ranitidine, both, and now a new one. The gastroparesis supposedly went away in 2009, but the acid reflux remains. I still never regained my appetite and constantly have to remind myself to eat, get nauseated often after eating, and sometimes just from the smell or thought of food. But the scopes came back normal and I just deal til it passed. But two months ago I began feeling the way I did before I got diagnosed with gastroparesis. Going all day not eating, cringing and nausea at the mention of food, chronic nausea after one bite of food, and misery after eating sometimes well into the next day. Then it got to the point that even water would make me miserable when it hit my stomach. I figured it would pass, but it didn't so I went to my gastro who did a scope. As usual everything was normal except inflammation of the esophagus and stomach. They did a biopsy that came back normal. They said it was acid reflux and I needed to get back on my ranitidine and pantoprazole. Which is funny because if they would look at my record I never got off it, in fact both doses were increased. Yet the symptoms continue to get worse. I'm currently on Ranitidine (zantac) 150mg twice a day and Pantoprazole 40mg in the am. Does anyone else have this problem? Does it fall into the same area as not responding to OTC pain/cold/allergy/flu meds? Maybe the fact they are prescription strength doesn't matter. Maybe I'll lose some weight (pending endocrine problems). I do manage to get one small meal in a day and try to make smart choices to get the best nutrients out of little food. My biggest concern is not getting enough fluid intake in especially with it being summer in Louisiana 92 degree averages. Thanks, I appreciate any suggestions. Chrissy

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I have the exact thing your describing. The only thing that helps is applecider vinegar in water. None of the reflux meds help me either. I think the reason is for me I actually don't have enough acid in my stomach so it can't break down foods. That's why the vinegar helps. I'm so sorry you have this too- it's terrible. :(

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Chrissy,

I went through the same mess. It was not until we controlled my migraines that my GI symptoms went away. Now that m migraines are flaring a bit, so are the GI symptoms. My neuro says I am one of the rare adults that has abdominal migraine with headache. Are your migraines controlled? Maybe that's another place to look for an answer.

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Me too.

My dr started me on digestive enzymes for both protein & fat & modified my diet. I was taking TONS with everything I ate for a while but it has started to help & I've been able to level off he amount & start eating more.

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your symptoms sounds a lot like mine as well, and i have gone through the same testing. the thning that has helped me was taking an h1 and h2 together in the morning before breakfast and than again before dinner. when i go off them, within a day my headaches are awful and my nausea is back and i cant eat again. i just did a trial on my own, figured it wouldnt hurt to try and i am so happy i did. but you know your body better than anyone. but since the h1 and h2 work so well on me, my docs are suspecting mcas, which is common for eds and pots

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Hi, thanks for the replies.

Katybug - I have had migraines since this all started in Dec. 2004 and have been unsuccessfully treated with more migraine prescriptions than I can remember. Nose sprays, oral drugs, iv meds at the ER, etc. I do find an ice pack at the base of my skull control the migraines and "seizure" activity temporarily. Otherwise I just wait it out. I've been to many Neuros over the years, but am currently blacklisted in the local area. They just don't know how to handle the complex case so they try to refer me out or politely tell me that come back would be a waste of my time.

jrlehnardt - What is mcas? Sadly I'm pretty much on my own until I can get to the mayo clinic. All my doctors no matter the specialty are throwing up their hands, leaving all my meds as is, suggest for me to slow down any attempts at normal activities, and keep passing me back and forth to one another. They all claim once mayo figures out what is wrong with me then they will be happy to manage it, but with the huge mess it has become no one knows where to start. Hopefully I can get in this fall.

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I am about to start taking iberogast, which is a german product made of multiple herbs. Look it up online, apparently it is amazing at dealing with gastroparesis and stomach upset including gerd.

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Chrissy,

Interesting you mention "seizure" activity. The drug that is actually working for me is Depakote...an anti-seizure medication. I tried Topomax and it really made my POTS go nuts, but, I haven't had any bad side effects from the Depakote. I have no intention of being pregnant so I can take it. It's not good for women planning to concieve to take it. It might be worth a try if you haven't tried it yet and don't plan on becoming pregnant. It may be something that will alleviate several symptoms for you. Here is a Find a Doctor link from migraines.org. Maybe it will give you a place to get some treatment: http://www.migraines.org/help/helpclin.htm

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MCAS is Mast Cell Activation Syndrome. You can learn more on another forum as well . Www.prettyill.com. Dr. Diana Driscoll is doing some research and has written a book. Watch her video on Duamox, see if it strikes any bells with you.

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****more for migraines. I'm still learning what I can!

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I have this issue also. I've had all the meds and 3 nissens for my severe reflux with no relief. My nausea is my worst symptom. My neuro thinks my gi issues are nerve related. If that's the case, I'm not sure how that is treated or dealt with. The only thing that helps the reflux and nausea is to not eat.

Chrissy, I get migraines also but not sure what you mean by 'seizure' activity?

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