Re: gastroparesis and nausea

Posted By Rebecca on July 18, 1999 at 10:26:36
I am a 27 year old female who has suffered from persistant nausea and dry heaving for about 2 years.  I have had many tests performed.  Johns Hopkins found that I suffer from gastroparesis.  I have tried several motility medications - none were effective.  The doctor said that a nerve is causing the nausea and the gastroparesis.  What nerve might this be and how can it be treated?  Is there testing that can be done to determine which nerve is causing this problem?  The nausea is worse in the morning or when I get nervous or anxious.  I have been to two psychiatrists, where depression and anxiety were ruled out.  Food really doesn't seem to have an effect on the nausea.  I do not actually throw up, just dry heave.  I have no other symptoms of gastroparesis besides the nausea.  I have had decompression of the 8th cranial nerve on the left side of my head for dizziness.  The nausea started a year after the dizziness and before surgery, but my 8th cranial nerve on the right side of my head is also compressed. Johns Hopkins does not feel this is causing the nausea because the dizziness is gone and says that this nerve cannot cause nausea alone.  Thank you in advance for any advice you can give me.

[Lara__0]

Posted By Lara on July 18, 1999 at 20:34:17
I just wanted to say thanks for posting.  For the last eight months, I have had the exact same symptoms that you mention and no one (doctors, psychiatrist, chiropractor, acupuncturist) has made the diagnosis of gastroapresis.  They did mis-diagnose and take out my gallblaader, but that's another story.  Could you tell me, if you have the time, how they diagnosed gastroparesis?  I will aslo be extremely interested to see what the doc here has to tell you.  Thanks and good luck!

[Rebeca__0]

Posted By Rebecca on July 18, 1999 at 22:02:28
Hi Lara.  I will explain how the doctors diagnosed me with gastroparesis.  I had 3 tests done.  The first was done at a local hospital where I ate an egg sandwich with a trace of some drug that can be detected by x-ray.  I had to lay on a table for about 2 hours and periodically the hospital would take pictures of the egg sandwich and see how far it had gone down the digestive process.  The second test was done while I was taking erythromyicin and standing up. The third test was done at Johns Hopkins where they inserted a tube down my nose that had monitors on the end to test the muscles in my stomach and small intestines.  This was an all day process.  All three of the tests revealed some delayed emptying.  I would suggest finding a good gastrointestinal doctor in your area and asking him about this test being done for gastroparesis.  Hope this helps!  The test with the egg sandwich is painless and fairly quick.

[TRUDY__0]

Posted By TRUDY on July 21, 1999 at 23:27:35
MY SON IS 28 YEARS OLD. HE HAS HAD BOUTS OF VOMITING SO BAD OFF AND ON FOR THE PAST 3 YEARS THAT HE HAS TO BE HOSPITALIZED. THESE STAYS ARE ANYWHERE FROM 7 TO 14 DAYS.  HE IS NOW SEEING HIS SECOND GASTROENTEROLOGIST, HE HAS BEEN DIAGNOSED WITH GASTROPARESIS, AND TOLD THERE IS NO CURE, THE ONLY THING THAT CAN BE DONE IS TO BE HOSPITALIZED, HOOKED UP TO IV'S UNTIL IT PASSES.  HE TAKES PREVICID AND REGLAN, AND NOW PROZAC.  HE HAS SPENT 15 OF THE PAST 28 DAYS IN THE HOPITAL, TWO SEPARATE VISITS AND NOW AFTER BEING OUT 10 DAYS, HE HAD TO GO BACK AGAIN THIS MORNING.  HE IS VERY DEPRESSED, CAN'T HAVE A NORMAL LIFE, EVERY TIME HE THINKS HE IS GETTING BETTER, HE GETS SICK AGAIN.  HE HAS HAD EVERY TEST. AND THEY STILL CAN'T FIND A WAY TO STOP IT FROM OCCURING SO OFTEN.  JOHS HOPKINS IS CLOSE TO US, WHAT DOCTOR THERE SPECIALIZES IN THIS.  HOW CAN I GET MY SON AN APPOINTMENT THERE.  I WOULD APPRECIATE ANY HELP OFFERED.  THANK YOU, TRUDY

[Rebeca__0]

Posted By Rebecca on July 23, 1999 at 15:51:47
Dear Trudy:  The way that I got to see a doctor at Johns Hopkins is by my gastrointestinal doctor referring me there.  He also had to write a letter to my insurance company in order for them to approve the visit.  The head doctor of the motility center is Marvin Shuster.  I did not see him, however, because the wait was about 6 months long.  I saw a Dr. Brian Lacy, which I had to wait 11 weeks to see him.  Johns Hopkins has two other drug studies that are available through them - these drugs are not yet released for general use in the United States yet.  Dr. Lacy said that a lot of people find comfort with these drugs when all others have failed.  Dr. Lacy may also want to test your son for delayed emptying in the small intestines as well as the stomach, which only they have the equipment to do this.  Good Luck.

[Trudy__0]

Posted By Trudy on July 23, 1999 at 23:39:38
Dear Rebecca, thank you for the info,we are looking to Johns Hopkins and the University of Virginia, for the next step.  Did You have to be hospitalized when your gastroparesis acted up?  how long did your condition last and what are you doing for it now?  I hope you don't mind me asking these questions, but we don't know anyone else with this problem.  I greatly appreciate any insight you can give me about this illness.  the more we know the better we can handle the situation.  thank you again, Trudy

[Shirley-Murphy]

Posted By Shirley Murphy on July 24, 1999 at 22:06:57
Strange I came upon this web site.  My son has had "vomiting spells" since he was nine years old.  He is now 42. Has a fullness in the stomach hours after eating and usually in middle of night will wake up vomiting.  Then this goes on for at least 24 to 27 hours every 20 minutes with IV's, shots, suppositories, and the whole works and nothing helps.  He just has to get to the place he is totally worn out and then after so long he stops.  And has anxiety wondering when will the next time be.  He has had two surgeries in Mayo clinic but unfortunately it did not correct the problem,  I am now wondering if gastroparesis is his problem.  We have never had a name to it before and it does sound familiar.  Any comments from anyone or help will be appreciated.  He can go for a fair period of time and not get sick except just as he says "feel erpy".. Thanks for any help anyone can give us.

[Tamara__0__0]

Posted By Tamara on August 08, 1999 at 16:10:15
Hi, all of you.
I am so shocked to find that there are so many people suffering from gastroparesis!!!  My sister has it, and is suffering terribly.  She lost 50 lbs in a about six months.  She was hospitalized almost continuously from Dec of 1998 to May of '99, for symtpoms related to gastro paresis, nausea, vomiting, and dehydration.  They finally put in a central line and sent her home on TPN.  She has also had a j tube sunce January, but the tube feedings seem to increase her nausea.  She has tried every medication that we know of, and is now on Zofran in her IV. One thing that I haven't seen anyone talk about is Ativan/Lorezapam.  It is typically used for cancer patients, but really seems to help with the
nausea.   I want you all to know that there is hope.  I am sure that by now
most of you have heard about the gastric stimulator.  Well, my sister is right now at the University of Kansas Medical Center awaiting that surgery!!!  It is scheduled for the for the 11th of August. We are thrilled.  Yes it is still
experimental, but despite what you may have heard, there have been tremendous results.  I am not saying it will cure everyone, but at least there is hope.  You can look on the interenet(infoseek is the best), to find more information
about this.  I also welcome your emails.  I have watched my sister go from an active, very vivacious person, to a weak(stuck in bed) depressed, very thin person.  I feel that this disease is awful, and is destroying lives.  I want to do something about letting people know about the surgery.  By the way, it sounds to me that the surgery is not much more difficult to go through than getting a j tube(although I wont know until after Wednesday).  I think it is vital to let people know that there is hope.  Anyone that would be willing to help me contact the people that have written here, and let them know, I would really appreciate it.  I am not saying that the surgery is the miracle cure, but I did meet a
woman that had the surgery about one year ago, and she is doing really well.  I have done a lot of research, and know a great deal about this. I(by the grace of God) was able to find out about the surgery, and we told her doctors about itt. For some reason not many people know about it yet, but to be successful in the study, they have to have people that are willing to go through it, or it will never be approved.  Well I have rambled enough, please feel free to write me. I
I would love to hear from you, and so would my sister.  It helps to know there are other people going through the same thing.  My email is  ***@****        God Bless!!!!

[KELY__0__0]

Posted By KELLY on September 10, 1999 at 00:54:03
I have a sister, Kim, that is 40 years old and was diagnosed with gastroparesis several years ago.  She has had 5 J-tubes, they kept getting infected and the doctors would remove them for her to heal.  They finally gave up on those.  She not only has dry heaves and vomiting, but severe diarrhea.  I had her at John Hopkins last summer for 9 weeks, they couldn't tell us what was causing the severe diarrhea.  She has tried everything for the nausea, vomiting and diarrhea without much luck.  Her doctors told us there is nothing they can do but try to make her as comfortable as possible.  She has diabetes as well.  So her overall health is not good and the doctors have told us that she probably will not be with us much longer.  I am searching for anything that anyone knows and feels might be of help to her.  I would like more information on the gastric stimulator and who & how to contact the doctors involved with this.  Please help me to help her before it is too late.  Thank You!!
  










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