plaxico6 Posted December 12, 2008 Report Share Posted December 12, 2008 Hey to all, I was wanting to see who some of you use for doctors.As some of you know I have extreme nausea and was diagnosed with POTS at Mayo in late June.Even before the diagnosis my main problem has been the extreme nausea for over a year now.I have a feeding tube and just cant get any relief.Of course I have other problems as all of us do but I just cant function with this nause.I will go anywhere for 1-4 days without any food at all other than the jtube feeding.I have a local internal medicine doctor I see here in Tupelo MS but he is not familiar with POTS and tells me he dont but he still tired his best to treat me with whatever meds or other means.I have tried all of Mayos recomendations thru my doctor and they have said thats all they can do.I am waiting to see Dr Thompson in Pensacola but he is very sick also and it may be February before I can see them.Until then I am just here at a loss.I will travel so if any of you can recommend who you are seeing and if they are familiar with the POTS and or severe nausea.It seems my heart rate is under control with meds so I dont know if a cardio doctor could help but I would be willing to try.Thanks for any input.I just hope thru my prayers,faith, and family support there will be a better tomorrow. Buffy Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 12, 2008 Report Share Posted December 12, 2008 Hi,Zofran for nausea. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted December 12, 2008 Report Share Posted December 12, 2008 Buffy, I have no experience there, but I think there is an autonomic specialist at the Mitral Valve Prolapse Center in Birmingham/ University of Alabama. Anybody else been seen there? Maybe they can help? Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 12, 2008 Report Share Posted December 12, 2008 My son has POTS and the nausea has been horrible for the past year. Two months ago he saw a Gastrointerologist who prescribed domperidone. He is very slowly building up the dose. Even though he's only halfway to a full dose, the nausea has subsided enough that my son is able to eat with gusto. He still has low level nausea but it's rarely bad enough to sideline him anymore. Ask your doctor about domperidone. You may need to see a GI doc. In Europe it's an over-the-counter medication but in the U.S. it's not FDA approved. We are still able to get it with a prescription at a compounding center. It's quite expensive because insurance won't cover it, but it's worth it to see my son gain some weight! He has not had any side effects from it. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted December 13, 2008 Report Share Posted December 13, 2008 Lenna,Who was the GI you saw? Was he @ Beth Israel? Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 13, 2008 Report Share Posted December 13, 2008 Dan is seeing Dr. Alex Flores. He's a pediatric gastrointeroloigst at Tufts New England Medical Center (but has office hours in Wellesley as well, which is where we see him). Dan's POTS doctor, Roy Freeman at Beth Israel, referred us to Dr. Flores. He's a very nice guy and is trying hard to think outside the box to help Dan not only with the GI issues but with other POTS symptoms as well. Quote Link to comment Share on other sites More sharing options...
Bella127 Posted December 13, 2008 Report Share Posted December 13, 2008 I'm with Ernie on this one. Nausea has been a symptom I've had from the get-go, and one of the worst, and nothing ever helped - until I tried Zofran. Now that is my "go to" medicine if I'm having really bad nausea. I would ask your doctor about it and see what he thinks. I personally had no side effects from it, and know that for me it works very quickly. I use it as needed, but only try to use it maybe a couple/few times a week, depending.Have you ever tried motion sickness relief bands? They sell them at Triple-A Travel Agency. They're wrist bands that have little 'pressure' points that push down on a certain spot on your wrist - supposed to be for those with motion sickness in car rides, etc., but I did find that they helped relieve my nausea somewhat in the beginning.Let me know if this helps and what your doctor says! I hope you find some relief soon.Chrissy Quote Link to comment Share on other sites More sharing options...
Maxine Posted December 13, 2008 Report Share Posted December 13, 2008 Zofran could help a lot, but you should check to see if you have a gastric (stomach) motility problem, which you need ruled in or out.If you do have a motility problem domperidone can also help. The gastric motiolty test is non invasive, and fairly easy to do if your able to eat the day of the test. You are given radio active tracer in eggs or oatmeal, then films are taken as it travels through yo digestive system.I was fortunate that I didn't have nausea, but I had a very poor appetite in the beginning of my POTs crash. I continued to eat little bits hear and there. I'm glad I did, because the stomach is a muscle also, and if you don't eat it loses it's tone just like any other muscle-----------and you CAN develop motility problems. I just ate small amounts of vitamin fortified cereal, cheese, juice, rice & cooked vegetables. Eventually I was able to eat more, but I had lost about 25 pounds in 4-6 weeks.You should see a gastroenterologist.Good luck to you-- HUGSMaxine :0) Quote Link to comment Share on other sites More sharing options...
jordan6000 Posted January 12, 2009 Report Share Posted January 12, 2009 Hey to all, I was wanting to see who some of you use for doctors.As some of you know I have extreme nausea and was diagnosed with POTS at Mayo in late June.Even before the diagnosis my main problem has been the extreme nausea for over a year now.I have a feeding tube and just cant get any relief.Of course I have other problems as all of us do but I just cant function with this nause.I will go anywhere for 1-4 days without any food at all other than the jtube feeding.I have a local internal medicine doctor I see here in Tupelo MS but he is not familiar with POTS and tells me he dont but he still tired his best to treat me with whatever meds or other means.I have tried all of Mayos recomendations thru my doctor and they have said thats all they can do.I am waiting to see Dr Thompson in Pensacola but he is very sick also and it may be February before I can see them.Until then I am just here at a loss.I will travel so if any of you can recommend who you are seeing and if they are familiar with the POTS and or severe nausea.It seems my heart rate is under control with meds so I dont know if a cardio doctor could help but I would be willing to try.Thanks for any input.I just hope thru my prayers,faith, and family support there will be a better tomorrow. BuffyMy son (17) has extreme chronic nausea for the last 4 years, and sporadically 2 years before that. He was diagnosed with tachygastria and atypical GERD. He threw up Zorfan and every other anti-nausea drug. You name it, we've tried it. What helped was finding Dr. Kenneth Koch, a specialist in chronic unexplained nausea, at Wake Forest in Winston-Salem, NC, who did an EGG, an electrogastrogram. We found out that his gastric rhythmn was going a mile a minute. He had the motility test as well, but that turned out normal. He had huge levels of acid in his esphogus, but fortunately no pain. He is on Domperidone (for motility) and Prevacid (for acid). Domperidone has given him some relief. We have to order it from Canada. He is still so nauseated that he can't attend school, but he is able to leave the house now and then for a short outing. It was searching for an explanation as to why he had tachygastria that led us to Dr. Hasan Abdallah in Fairfax, VA. He diagnosed my son with POTS in November 2008. We're doing the trial and error thing now in hopes we can find something that will alleviate the tachygastria, which we hope in turn will reduce the acid, which are the major problems, along with the numbing fatigue.I hope you find help. Will keep you in my thoughts and will post again if we find any help for nausea. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 12, 2009 Report Share Posted January 12, 2009 yikes ... this thread looks just like a thread you'd see at www.celiac.com or any of the other gf forums when someone has been newly diagnosed with celiac disease. You may want to go take a look ... That's how I figured out gluten was a problem for me. Before being diagnosed with celiac disease I was on prevacid, protonix, nexium, donnatal elixer, zelnorm, immodium, lomotil, etc etc etc ... and told to go on the GERD diet, gastroparesis diet, etc ... and I still felt horrible ... The NIH says that 97% of celiacs are undiagnosed. Not that you have to be celiac to have digestive issues. Even gluten intolerance or other food intolerances can cause digestive or other symptoms ... Good luck with this ... Quote Link to comment Share on other sites More sharing options...
momdi Posted January 13, 2009 Report Share Posted January 13, 2009 ditto on trying zofran. It finally got my son discharged from the hospital 2 years ago after a long and nasty week. it's also available IV, if you can get a doc to try it that way. of course, as many other posts point out, finding and treating any underlying problem is always the best. Quote Link to comment Share on other sites More sharing options...
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