Gastroparesis And Pots.

[cardiactec]

how many of you have both gastroparesis and pots? is it common to have both?

if you know, what was the percentage of your emptying study? i was just diagnosed with gastroparesis and the report said that my stomach only emptied at 41% after 101 minutes and that a normal emptying is 50% and over at 90 minutes.....

[Sunfish]

both can be caused by neuropathy (autonomic &/or peripheral). there are a number of people on the board with the diagnosis but it can mean very different things for different people.

personally i have gastroparesis and dysautonomia, though POTS is no longer my diagnosis. gastroparesis is considered to be part of my dysautonomia diagnosis (autonomic failure/ progressive neuropathy), perhaps compounded by my probable diagnosis of mitochondrial disease.

my most recent GES emptying time WITH several pro-kinetic (aka motility) meds on board (doc didn't want me to stop them; usually they do) was estimated to be 873 minutes or almost 15hrs for the one egg (more food generally slows down digestion). different labs/hospitals present the data a bit differently (minutes, percentages, etc.) and i say estimated b/c obviously i wasn't at the lab for that long...the time was extrapolated from a two hour study. doing a bit of math it would have my percentage of emptying at less than 14% after 2 hours.

essentially my stomach doesn't work much more other than the bits than move through via gravity. my intestines are also very sluggish though we don't think they're quite as bad as my tummy. but i'd hate to see my numbers without my meds on board. i am on IV nutrition (aka TPN, total parenteral nutrition) and hydration (saline) as i cannot keep down more than about 300 calories on a good day; and that's pretty much liquids. i throw up on more days than not as things simply "back up" in my stomach with no where to go. i am definitely an extreme situation so do NOT use me as any sort of norm.

most people can regulate, though not eliminate, symptoms via meds, modifications in eating patterns, figuring out what foods work best, etc. there have actually been a number of posts on gastroparesis & many helpful links shared (on GP diet ideas, etc) so i would definitely recommend a search.

melissa

[cardiactec]

wow melissa.....sorry to hear you have to put up with all of this.....do the docs hold out hope that this will get better for you? how long have you had to deal with the GI paralysis?

[MightyMouse]

I have very slow gi emptying...and the gastroparesis comes and goes. I found out the hard way that Lexapro has been helping my guts when I stopped taking it for a while. Took me months to get back on track.

There is some research on GI pacing; folks have discussed it here, but it's been a while. Nina

[sstephan]

What were your symptoms cardiotec?

[cardiactec]

hello mom2abby,

my symptoms have been nausea (especially waking me in the middle of the night), stomach burning, and stomach pains. i started out having an upper GI cuz the docs thought i had an ulcer from all the burning that was going on. when they did the endoscopy, they noticed that there was a bunch of fluid in my stomach and considering this test was done after a 12 hour fast, the doc suspected gastroparesis (especially given my autonomic dysfunction diagnosis of POTS)........so he sent me for the gastric emptying study last week and they just told me yesterday that gastroparesis was confirmed..........

What were your symptoms cardiotec?

[DSM3KIDZ]

I also have Gastroparesis caused by autonomic neuropathy. My only symptom is nausea the debilitating type. My first GES was 220min with average being 80min. My second one I never got numbers they just said my tum digests significantly slow.

[jkapache]

ok, great topic! To all those that have GP, are you on any meds? If so what? To those that vommit, does that go away after being on meds? Or is it something you always sort of have?

[BEE]

I take Reglan as needed and levsin as needed. I am on a PPI for acid. And every now and then I feel really nauseous...For me at lest I go through cycles with my GI issues.

[jkapache]

Ok, new ? about this whole GP stuff! HAs anyone ever gotten sores or a burnt tongue from all the acid that has come up?? I have about 5 sores in my mouth, alot like canker, a blistery thing on the edge of my lip=- and the top part of my tongue is burnt.... it hurts bad, but also itched a bit! Anyone ever have this??

[jkapache]

Excited becasue my dr is sening me to a GI for some tests... hopefully we can get some of this stuff worked out!

[Guest Anne L]

Hello!

I'm Anne, a newbie here. I had joined the Shy-Drager/ MSA group, but obviously don't belong there. I've had nearly all the symptoms, but thankfully over a much longer period of time than with an MSA prognosis.

I just found your discussion forum after being diagnosed by EGD today with gastroparesis. I've had dysautonomic stuff most of my life, one symptom at a time. Lately they're adding up faster and faster. I'm 67 years old -- so much for the age 40 theory. After reading your recent posts I'm thinking that the two may be related. Last year I was diagnosed with neurogenic hyypotension after multiple "drop" attacks and other cardiac related stuff, severe heat intolerance, inappropriate adrenaline expression.

I had a Nissen 6 years ago for GERD (respiratory version - no heartburn) that has seemed to make things worse. I have nausea and vomitiing only after bending over - bloating, hiccups, and vomiting follow. Then laryngitis, cough, etc. Grocery shopping is the pits. Prilosec twice a day doesn't seem to help, except I keep hoping it will prevent acid injury to upper respiratory area. On the other hand, does acid repression slow digestion? The other possible related factor is Prozac. Of these, your recent posts make dysautonomia seem most likely. Any comments?

Some years ago I found that Reglan causes Parkinsonism, Propulsid abdominal cramps. The GI doc mentioned radionucleotide studies and then domperidone today. What has been your experience with this motillity drug?

Sorry for all the questions. I'm just really excited to find you, the real experts. The docs I've found around here have all struck out.

Anne

[cardiactec]

[hey jess,

my doc just prescribed motilium(domperidone). havent tried it yet though. i dont vomit, thank God!, but i do get very nauseous.

hey anne,

i too was just prescribed domperidone. havent tried it yet, so i have no clue as to what to think about it!

welcome to the forum by the way!!

[Lulu]

cardiactec-

i hope you get some good results with new med!! keep us posted!!

anne-

welcome to the forum!! nice to have you aboard! you will find caring supportive people here and lots of good ideas, advice. & i'm sure we'll benefit from your input & experience, too!!

jess-

i'll say hi & welcome, too, cuz i've not "met" you yet i just posted relief measures for mouth sores on a different thread, but in case you didn't see it there,here it is especially for the type you have (w/itchiness): you might try mixing = parts Milk of magnesia and liquid benadryl and swishing it in your mouth every 4-6 hours. if you use more than a teaspoon for the swish, spit it out after. hope you get some relief!!

good luck and feel better, to all 3 of you!!!

peace,

lulu

[Kitsakatsa]

I had one two years ago, and one just a few months ago that showed same. My doc said they had attended a lecture by Mayo GI addressing Gastroparesis that very week (great coincidence) and the lecturer said that they had little success with pacemakers and even meds. Then he said it left off with the ever-frustrating sentance of "clearly we need to do more research in this area". But, I thought it was great that there were active Gastroparesis studies ongoing at Mayo. When I went there last summer, I got a flaky doctor who was so clueless I think he was an impersonator. I was discouraged. But now, I know that at least some work has been done and may continue.

Wait- wasn't the whole point of South Beach diet that if things stay in your stomach longer, you will lose weight? How come that's not working for me?!

Take Care Everyone,

Kits

[jkapache]

lulu, thx for the info on the sores!

My dr gave me a prescription for Regulan(sp??) for the vommiting, altho have not taken it yet, thinking I'll just wait and go see the GI and go from there! What are your experinces with it?

Anne, have you ever had the vommiting with the GP? If so, does the Prilosec help with that? What about the acid reflux? THANKS EVERYONE!!

[Guest Anne L]

Jess,

My vomiting is strictly a result of bending over. It's as if my esophagus only works on gravity. With this new gastroparesis Dx I'm don't really know which causes what. My first symptoms 10-12 years ago were bloating. Anything around my chest or waist that fit in the morning was way too tight by afternoon. It's only been in the past year or two that hiccups (from irritating my diaphragm) followed the bloating and then retching/vomiting. It's usually just mucous because it doesn't seem to be related to what I've eaten. Gas-X (simethecone) helps reduce the bloating. This is an inconvenient nuisance because of the associated dizziness and vasovagal stuff, but it's not as worrisome to me as the respiratory stuff. With Prilosec I still have an acid taste and irritation in my mouth. Listerine burns really badly, and I have a mild sore throat all the time.

Hoarseness led to the GERD diagnosis, and my cough sounds like a kid with croup. I just had a bronchoscopy and was glad to find that there's no damage, so I guess it's a mechanical problem rather than disease or acid damage. I don't know if Prilosc has been protective. Without Prilosec I do get a belly ache/burning/empty sensation which wakes me and disappears if I eat something. That's been happening for 25 years.

Reglan caused me to have severe Parkinson type stuff - the tartive dyskinesia - involuntary mouth movements - went away when I stopped the Reglan, but handwriting is difficult and illegible and my gait is still unsteady. I fell backwards to the extent that I had to have a wrist bone (CMC) replacement from repeatedly breaking my falls. That's less frequent af?er physical therapy to improve my balance.

I'm cpncerned about the domperidone that the GI wants me to use for gastroparesis. I haven't found anything on the 'net that has relieved that concern. I've written to Mayo to ask what their studies have shown. GE (gastric emptying) studies are next. I'm eager to find out if the GI guy has connected the dysautonomia to gastroparesis. I made sure he knew about it before the EGD.

Anne

Hey, Kits

I wonder if the "little success" with meds from the Mayo lecture included domperidone.

Lulu,

Thanks for the mouth sore info. That makes sense. I don't have a lesion but just a general 'sunburn' type sensation and violent reaction to the burny type Listerine my dentist insists on. Haven't tried the new 'gentler' one.