Roselover Posted November 20, 2005 Report Share Posted November 20, 2005 Thank you, everyone, for your love and well wishes and prayers this past week. I am home and really enjoyed sleeping in my own bed for the second time in fourteen days! I am exhausted as you can imagine.So, here's what I learned. Autonimic dysfunction was confirmed. My stomach is not functioning correctly. The top part seems to move the food down, but the lower part doesn't do it's work at grinding and empyting and doesn't do enough to stimulate the small bowel to do it's job. The nausea and the pain are all tied up in the neurotransmitters sending pain and nausea messages to the brain, even when there's nothing to be nauseated about. Basically, the same problem that causes the POTS and other autonomic dysfunction symptoms. Unfortuneately, there's not a lot to do about it. They gave me a perscription for one more nausea med that is a 3 day patch. I'll try that on my worst days hoping it will allow me to stay hydrated and out of the hospital. I am supposed to stay away from pain meds. This is discouraging to me because there are times that the pain is so bad. And the one thing I have had is my pain meds to have a few hours of comfort. They are going to send me to a pain clinic to learn to deal with the chronic pain without meds as much as I can. One thing the doctor suggested was using Valium on my very worst days. He said it doesn't help the pain, but it will help me deal with and it won't slow down my motility as much as the Vicadin. I'll have to talk to my family doctor about that this week. The last and most hopeful thing is a medication he's prescribed for the motlity. I have to order it from Canada, but it doesn't have the same side effects as Reglan and he says, works as well as Reglan for motility. To begin with this week, I am going to give Zelnorm a try. I am doubtful though, because I have frequent boughts of diarrhea and I'm afraid Zelnorm will enhance that. But he thought it was worth a try so while I work on getting the med from Canada, I'll try it.The only other thing I can do is try to get the autonmic dysfunction under control. I didn't get to see any of the autonomic subspecialists while I was there. Most of them were gone. I do have an appointment with Dr. Sandoni in December. I won't travel again in December, but at least I have an in now and I have the option of seeing them in the spring. I see Dr. Grubb for the first time in January, so I may not even feel the need to go back to Mayo... we'll see.The autonomic testing at Mayo is so professional! Some of my other tests were so uncomfortable, that the autonomic testing seemed almost fun in comparision. They told me they usually run the tests on about 12 people per day, but they can do 15 a day if needed. As I said in my other note, they only make you stand on the tilt for 10 minutes so it wasn't near as bad as the other two tilts I've had.Mayo is an amazing place! Almost all of my appointments were on time and I actually had very little waiting room time. We stayed at the Khaler Grand and it was perfect! The temps were down to -9 with wind chill, but we never even stepped outside in it. Plenty of food choices, wireless internet available in waiting rooms ( my husband did lots of waiting for me.Well, just wanted to give you all the final update. If anyone has questions, feel free to ask and I'll try to answer!Hope eveyone has a wonderful Thanksgiving week.Love Roselover Quote Link to comment Share on other sites More sharing options...
mom4cem Posted November 20, 2005 Report Share Posted November 20, 2005 Glad to hear you had a good trip and came back armed with some news to treat yourself. I hope the new meds work for you. Brr, that is some cold weather! Quote Link to comment Share on other sites More sharing options...
Guest Finrussak Posted November 20, 2005 Report Share Posted November 20, 2005 Glad youre back safe and sound!!! a 10 min tilt??? Some of us would not even have positive results!!! as far as the new meds...go slow and tiny doses...you can always add more..and bring the list to Dr Grubb...he will be able to sort out the ones most likely to worsen the dysauto stuff. ( and my opinion is extreme caution with the Zelnorm...too new to be declared as safe as the drug co. would like you to beleive...plus theres been some reports of more side effects...my GI guy now is extremely skeptical and only uses as last resort!!!) Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 20, 2005 Report Share Posted November 20, 2005 Hi,I am glad you had a succesful trip. I hope you are recuperating well from all the testing. Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted November 21, 2005 Report Share Posted November 21, 2005 Roselover-Sounds like a successful trip!! Zelnorm is a WONDERFUL medicine!! My 6 year old daughter who has POTS and SEVERE motility disorders is on it and has been on/off it since she has been born. Which drug are they wanting to try you on from Canada - Domperidone? Have you tried Erithryromicin (sp?) yet? It is worth the try!! I'm assuming that they diagnosed you with Gastroparesis. Sounds like you also have involvement of dysmotility in your small intestine. Did they give you any specific diagnosis? My daughter has a cecostomy as a result of her severe dysmotility. She also has been diagnosed with gastroparesis, hypomotility, visceral hyperalgesia, GERD, redundant colon, mild neuropathy in her sm. bowel (aka Chronic Intestinal Pseudo-obstruction Syndrome), migraines, abnormal lack of contractions while eating, abdominal migraines, frequently prolapsing cecostomy, EKG changes and POTS. We have been dealing with her severe GI problems since birth. She has been through EVERY GI med and test imaginable!Hope that you can find a med that works for you!! Hope that you can enjoy your Thanksgiving!! And I totally know what you mean about being home in your own bed!! Quote Link to comment Share on other sites More sharing options...
Guest Finrussak Posted November 21, 2005 Report Share Posted November 21, 2005 (edited) Hi Mary,Erythomycin is an antibiotic that can cause BAD GI problems from cramping to pain to diarrhea. The version with enteric coating- can also causes problems, though less. Perhaps you meant another similar sounding drug. As for the Zelnorm Im sure it helps some and in your daughter's case, she has severe problems; therefore can't be compared to the "usual". It sounds like she was born with many challenges, sorry to hear.( and which is why serious drugs are necessary)I just have a big problem with "big pharma" pushing drugs especially with TV commercials; only to find out later that there's problems...look at Cerebrex. For those who nothing else works and who are also careful with monitoring it could be a life saver...for others who may be able to try another safer alternative, it can be very harmful!!! Zelnorm is falling into that "gotta have it because I saw it on TV" category...plus the salesmen are REALLY pushing this; due to the vast numbers with apparent IBS type sx desperate for help and Drs desperate to try it...another reason I recommend caution.Many consider drugs used in widespread groups less than 7 years to be "new"; some drugs require longer trial periods, and some are used for distinct populations then used off-label ( like mestinon originally for myasthenia gravis). It doesnt mean we should avoid them, just be careful!!! Edited November 21, 2005 by Sunfish Quote Link to comment Share on other sites More sharing options...
Roselover Posted November 21, 2005 Author Report Share Posted November 21, 2005 Mary,Yes, the med from Canada is domperidone. Has your daughter tried it? I'm also glad to hear that you value Zelnorm. Finrussak's comment makes me a little more cautious, but it's the best for me to begin with. I kinda don't think it'll work, because my problems are higher rather than lower, but we'll see. I really want to stay out of the hospital this coming month! (and it's gonna take a few weeks to get ahold of the domperidone)I don't have my "official" diagnosis yet, but yes, it's gasteoparesis with periods of psuedo obstruction. They were able to confirm that my muscles have the copacity to work, but the communication to cause it to work is failing. I have great hopes for the domperidone... but again... we'll see. I get the full report and test results in a couple of weeks. I was inpressed that the doctor I saw was very familiar with dysautonomia and it's effects on digestion. Finnrussak, I thought 10 min was very short too. In fact I have my worst HR and BP drops after 10 min, but apparently I had enough to confirm the POTS in that short time.~Roselover Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 21, 2005 Report Share Posted November 21, 2005 Hi,My cousin has POTS and NCS and she is taking Domperidone for her GI problems. She says it helps her. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted November 21, 2005 Report Share Posted November 21, 2005 roselover - so glad to hear that you're home. and in your own bed again...after my many hospital stays & medical travels this past year i can definitely relate and am glad that your trip sounds like it overall was productive/helpful.my tilt was "short" this past spring too but it was still absolutely miserable for me. glad yours wasn't so bad (relatively speaking). and yes, i realize that many things become "relatively speaking" with all the testing re: stomach issues, reading your post, diagnosis, etc. sounds similar to where i was last winter/spring. like mary's daughter, zelnorm also helped me. and still is helping me. mestinon is what helped me the most GI-wise though. it increases GI motility which can be a bad thing for some but for me is good. while zelnorm is currently marketed for lower Gi issues, it is not a targeted med & thus has an affect on the entire GI tract to some extent. there are actually studies in the works for its use/effectiveness in gastroparesis. my motility issues are from top to bottom (or at least from stomach down) and it helped some overall. you're right to be cautious about the diarrhea (not an issue i have...i'm the opposite) but as long as you spoke with the prescribing doc about it & are careful it sounds worth a try.domperidone is next on the list for me to try so i'll be eager to hear how it works for you. while i'm not super these days GI wise i am lightyears better than last year so we're going for staying steady and trying to keep some things in the arsenal for if/when things get worse.i may be in toledo for some of january so we'll have to keep in touch re: when you'll be in town for your appt with dr. grubb. keep on hangin in there...hopefully things are starting to be on the upswing for you.... melissafinette-as far as the mention of Erythomycin, it is the antibiotic that mary is likely referring to - not something else - as it is used in the treatment of gastroparesis & dysmotility at times. Quote Link to comment Share on other sites More sharing options...
Guest Finrussak Posted November 21, 2005 Report Share Posted November 21, 2005 Melissa...interesting comment on the Emycin...do you know the how's or why's??? alternative uses are fascinating to me.The rest with GI issues:If you dont mind the question: do you think the GI stuff is a result of the dysautonomia ( yet one more system in snafu) or do you think its coincidental but worsened by the dysauto ( like youd probably have it anyway but maybe not as bad). All part of my trying to understand the cause/effect and classification thing...thanksas for the Motilium/ domperidone...here is the fact sheet...Looks very interesting in that it blocks dopamine receptors which blocks nausea, vomiting and aids in stomach emptying etc; BUT it doesnt cross blood-brain barriers which is a VERY good thing ...Some Drs are using it to promote breast milk...as it does have an effect on prolactin- indirectly; so the only caveat I see is it will promote an already present prolactin secreting brain lesion. Other than sensitivities to drug itself the side effects are rare and less than for many drugs!!! see for yourself!!! ( and thanks for mentioning it...my uncle suffered the past 40 years with slow stomach emptying/regurg etc and the Reglan doesnt cut it...which is why I bothered to look it up...I am definitely going to tell himabout this!!!)http://home.intekom.com/pharm/janssen/motilium.html Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 21, 2005 Report Share Posted November 21, 2005 Roselover, I am so glad you were able to get through your trip and get some answers. I know you are disspointed that you didn't get to see an autonomic specialist. I hope your life will start getting somewhat better now that you can focus on which areas can be treated. Rest this week and know how proud we are of you for making this trip even though you were so very sick!Carmen Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted November 21, 2005 Report Share Posted November 21, 2005 Finette-Emycin is the drug used for motility disorders. My daughter took it also for a long time. Like I said, she's been on every med, test in the book. It works in the same way as most, it speeds up the entire digestive tract. It works differently than most motility drugs. It is not used as much as the drs don't want you to build up a tolerance to antibiotics, especially if you are allergic to penicillin.Like I said, because of my daugter's conditions, I am VERY knowledgable in the motility area. GI Motlity problems and Dysautonomia are frequently comorbid conditions. As are migraines, FMS, and I'm sure I'm forgetting some others. Quote Link to comment Share on other sites More sharing options...
Jasione Posted November 21, 2005 Report Share Posted November 21, 2005 Thank you, everyone, for your love and well wishes and prayers this past week. I am home and really enjoyed sleeping in my own bed for the second time in fourteen days! I am exhausted as you can imagine.So, here's what I learned. Autonimic dysfunction was confirmed. My stomach is not functioning correctly. The top part seems to move the food down, but the lower part doesn't do it's work at grinding and empyting and doesn't do enough to stimulate the small bowel to do it's job. The nausea and the pain are all tied up in the neurotransmitters sending pain and nausea messages to the brain, even when there's nothing to be nauseated about. Basically, the same problem that causes the POTS and other autonomic dysfunction symptoms. Unfortuneately, there's not a lot to do about it. They gave me a perscription for one more nausea med that is a 3 day patch. I'll try that on my worst days hoping it will allow me to stay hydrated and out of the hospital. I am supposed to stay away from pain meds. This is discouraging to me because there are times that the pain is so bad. And the one thing I have had is my pain meds to have a few hours of comfort. They are going to send me to a pain clinic to learn to deal with the chronic pain without meds as much as I can. One thing the doctor suggested was using Valium on my very worst days. He said it doesn't help the pain, but it will help me deal with and it won't slow down my motility as much as the Vicadin. I'll have to talk to my family doctor about that this week. The last and most hopeful thing is a medication he's prescribed for the motlity. I have to order it from Canada, but it doesn't have the same side effects as Reglan and he says, works as well as Reglan for motility. To begin with this week, I am going to give Zelnorm a try. I am doubtful though, because I have frequent boughts of diarrhea and I'm afraid Zelnorm will enhance that. But he thought it was worth a try so while I work on getting the med from Canada, I'll try it.The only other thing I can do is try to get the autonmic dysfunction under control. I didn't get to see any of the autonomic subspecialists while I was there. Most of them were gone. I do have an appointment with Dr. Sandoni in December. I won't travel again in December, but at least I have an in now and I have the option of seeing them in the spring. I see Dr. Grubb for the first time in January, so I may not even feel the need to go back to Mayo... we'll see.The autonomic testing at Mayo is so professional! Some of my other tests were so uncomfortable, that the autonomic testing seemed almost fun in comparision. They told me they usually run the tests on about 12 people per day, but they can do 15 a day if needed. As I said in my other note, they only make you stand on the tilt for 10 minutes so it wasn't near as bad as the other two tilts I've had.Mayo is an amazing place! Almost all of my appointments were on time and I actually had very little waiting room time. We stayed at the Khaler Grand and it was perfect! The temps were down to -9 with wind chill, but we never even stepped outside in it. Plenty of food choices, wireless internet available in waiting rooms ( my husband did lots of waiting for me.Well, just wanted to give you all the final update. If anyone has questions, feel free to ask and I'll try to answer!Hope eveyone has a wonderful Thanksgiving week.Love RoseloverHi folks:Erythromcyn can also cause chemical hepatitius. It hospitilazed me for hepatitus back in 1993. So be aware of that...if you are taking it and start getting worse, weaker, or you develop upper right quadrant pain then let your doctor know.Was great to read Roselover's posting on Mayo as I head there in three weeks myself for testing. I was there in '96 and '97 and my ability to eat has gotten much worse and my bone density loss is now out of control. 12 years of dysautonomia and gastroapresis are pretty hard on bone density. So this is my last hope at finding some way to stop the bone loss.....best, Jasione Quote Link to comment Share on other sites More sharing options...
Roselover Posted November 21, 2005 Author Report Share Posted November 21, 2005 Finrussak, thanks for the posting on domperidone. I was going to do some research this morning. What you said about not crossing the blood brain barrier is exactly what I was told at Mayo. Reglan does and thus the possible bad side effects. And about your question of the cause of the motlity. What they were able to do for me this past week is to confirm that I do not have a structural problem in my stomach/ small bowel. They told me that the motlity issues I have are very consistent with the whole problem of the autonomic system not working. So basically, for me, my nausea, pain and motility issues are from the same malfunctioning that causes my POTS. Don't know this is the case for everyone, but this is how my body is working.Ernie, glad to hear about someone who's tried the domperidone. Thanks!~Roselover Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted November 21, 2005 Report Share Posted November 21, 2005 Roselover,I'm glad your experience went well at Mayo. I think I am having some of the same issues as you. I was dx with gastroparesis but they don't feel that is the main cause of my nausea. Becasue the nasuea meds don't work to good I'm under the impression it has to do with getting the wrong messages from my neurotransmitters. What were thier suggestions on that? You mentioned getting the autonomic dysfunction undercontrol is that how? Also how do you get the dysfunction undercontrol do they mean by taking domperim (however spelt) to keep your system flowing?I've been having a few dx thrown my way and my doctor said if there is no improvement by dec she will send a referral for me to go to Mayo. Do you think it was worth it? Did your insurance pay and last question did it take long for you to be seen?Sorry for all the questions I just feel your post hit home with me and now I'm conpelled to follow your stroy.Please post on the new drug, I wanted to start it but don't have a prescription for it.Thank you for you courage to get testing done, every bit of new information has the chance to help many.Dayna Quote Link to comment Share on other sites More sharing options...
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