Slow stomach emptying and Domperidome

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lillye
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Date Joined Jul 2011
Total Posts : 179
   Posted 11/29/2011 4:41 PM (GMT -6)   
I had  a gastric emptying test which came back in the normal range but the very low end of normal. Consequently, my doctor called me in Domperidome to see if it will help with my primary symptom of nausea...Have any of you had this diagnosis? Have you tried Domperidome? How long did it take to feel better?

lozzy42
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Date Joined Jul 2011
Total Posts : 106
   Posted 11/29/2011 6:24 PM (GMT -6)   
Hi Lillye

I was on Domperidome 10mg a few months ago, I was only on them a few weeks as they didn't seem to be helping with the reflux. But, saying that I'm assuming the doc's giving you them for your nausea? and it could be beneficial for that. If they don't work for you, go back and insist on something else. Whatever you do, don't suffer in silence.


Loz

lillye
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Date Joined Jul 2011
Total Posts : 179
   Posted 11/29/2011 7:05 PM (GMT -6)   
Thank you---My reflux doesn't seem bad but the nausea is terrible and the gastric emptying showed my stomach wasn't emptying properly...

babygirl10150
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Date Joined Jul 2006
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   Posted 11/29/2011 7:40 PM (GMT -6)   
I started at 10mg but that didn't help so my dosage was increased to 20mg. I felt much better. Nausea is one of my main symptoms. The problem I have now is getting domperidone. It's not FDA approved in the states. There was a local compound pharmacy that made it but the FDA closed them. After that I ordered it from Canada but they won't ship here anymore. So I'm out of luck.

I was taking Reglan for a while until I got side effects. I don't understand why they won't approve domperidone and take Reglan off the market.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
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Date Joined Jul 2011
Total Posts : 179
   Posted 11/29/2011 8:11 PM (GMT -6)   
Because they are crazy and drug companies are so powerful . i will be getting mine from a compounding pharmacy. I am sure there sre other places you can obtain it...My main symptom is nausea too and some pain in my upper back, left upper abdomen and left ribs sometimes....Were you diagnosed with gastroparesis? Did the 20mg. help you? In your info at bottom, it states you were diagnosed with POTS ---what is that?I am so sorry you have these things---it is really difficult to live with constant nausea...and especially you feel helpless to do anything about it...Perhaps you can find another compounding pharmacy---where do you live?

dencha
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Date Joined Feb 2009
Total Posts : 6888
   Posted 11/29/2011 9:40 PM (GMT -6)   
Hi Lillye,
I hope you find an answer to your nausea issues.  I know how hard it has been on you.  Did it start after you had your gallbladder surgery?  If so, have you ever asked your doctor about the possibility of excess bile in your stomach? 
That thought just keeps coming to me whenever we have this discussion, and I can't remember if you've ever told me.
I hope your new medication helps.  You've suffered far too long!
 
I took Reglan actually, for quite a few years, but I never noticed that it did a thing for me one way or the other.  I stopped taking it because it wasn't helping.  When my doctor suggested I try it again, I started having twitching in my thumbs not long into using it, so quit taking it.  It never really helped, so I'm assuming that stomach emptying issues weren't the cause of my GERD.
Good Luck! turn
Denise

babygirl10150
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Date Joined Jul 2006
Total Posts : 636
   Posted 11/29/2011 10:15 PM (GMT -6)   
My gastric emptying test came back normal. I had several EGDs that confirmed inflammation in the stomach. After 3 nissens and all my symptoms returning I was referred to a wonderful specialist. My first appt he asked weird questions like if I have dry eyes, if my hands and feet are always cold, how much I sweat. After some tests he diagnosed me with Pots, postural orthostatic tachycardia syndrome. I have nerve issues too so he thinks my nausea might be connected with Pots or the nerves. The 20mg helped so much better. The place I was ordering them from also had instant dissolvable tablets that I thought worked better than the capsules. I'm in Wisconsin. Someone on my Pots forum said there's a compounding pharmacy in Ohio that ships, I just have to get my prescription sent there but I don't see my specialist until the end of Feb now. It's been 3 years with this nausea and everything else. Most people don't understand how debilitating it can be. It's awful! I hope you find something to help you!
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 11/30/2011 12:49 AM (GMT -6)   
Do you mind me asking how old you are---I am 61----I am so sorry you have been suffering so long...Is your nausea severe? Mine gets really bad sometimes----I know I also have gastritis from the endoscope---my doctor said to stay on the Carafate which I think is helpful somewhat....I will keep in touch and let you know how the domperidome works--how long did you take it before you noticed a difference?

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 11/30/2011 4:56 PM (GMT -6)   
I'm 28. My nausea is awful and 24/7. It's tolerable as long as I don't eat or drink. Once I eat or drink I'm in the bathroom the rest of the day. I haven't actually vomited since my first nissen (not sure if I can) but it seems like it can happen at any second and it's a comfort thing I guess to be in there. I get hot, sweaty, shaky, watery mouth. I still have acid that feels like it's sitting right in the back of my throat that would come up if I bend over which doesn't help. My nights are awful. I used to stay up until I couldn't keep my eyes open anymore because if I laid down it would get worse. I started a job 3 days ago and have to be up at 5am so it's been very rough. I have 3 bottles of carafate but that doesn't really help. My last egd there was a lot of bile in my stomach so I tried the orange powder (can't remember the name) but it was like drinking sand and didn't help. I found a site I can order domperidone without a prescription finally! My nausea starts getting better about an hour after taking it. It doesn't take it away completely but improves greatly.

I've lost a lot of weight from this which concerns my drs. I also have anxiety which doesn't help the nausea. It's like a vicious circle. I eat one small, bland meal a day in the late afternoon and can't leave the house after that. I'm thinking something with motion makes it worse?
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 11/30/2011 7:00 PM (GMT -6)   
i am so sorry you are experiencing such horrible symptoms and am so glad Domperidone is hleping you..It gives me hope---I am getting ready to take my first pill right now---Did you have your gallbladder removed before all this started? I did but I was nauseated a month before so nothing changed after the operation...How long did it take for the Domperidone to begin working? I think you should try eating mor than once a day...Also, someone told me eating an apple every evening before bed would help the reflux---i am going to try that too...I have lost 14 pounds and was thin to begin with but it is difficult to eat much when you are nauseated...Good luck--let me know how you are doing...

babygirl10150
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Date Joined Jul 2006
Total Posts : 636
   Posted 11/30/2011 9:01 PM (GMT -6)   
I still have my gall bladder but have had it tested twice and was normal. My drs are quite stumped as to what's causing it but they think it's neurological (I always thought I was a little crazy HA). The thing I liked about domperidone was I had no side effects and I'm very sensitive to meds. It took about an hour before I started feeling better. Have you tried other anti nausea meds?
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 11/30/2011 9:22 PM (GMT -6)   
I tried zofran which didn't help at all.Phenergan helps but doesn't make it completely go away and it knocks me out. I also have taken dramamine and emetrol but those didn't work either. I live with a pain under my left ribs and the doctors don't seem at all concerned....I can live with the pain but the nausea is terrible---i always wake up with some queasiness and once I eat it is worse...Then at lunch I eat again but just because I have to and then am nauseous until evening when it usually gets a bit better....I don't see much difference since taking the pill...I ate dinner and even had a small piece of apple pie...I feel okay---I sure hope it helps the nausea---I would be so happy....I understand the anxiety because this is scary---i worry I have something terrible or that i won't get better---but I am praying---

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 11/30/2011 11:53 PM (GMT -6)   
I take zofran now, doesn't help but I like to think it does, mind over matter type thing. Phenergan knocked me out too, maybe I should take that at night so I can sleep. I've tried dramamine but not emetrol. I've taken nauzene but that's basically a sugar tablet. It's very frustrating. They don't know what's causing your pain? I always say they can cut off my arm if it would take the nausea away. Lol I live in pain from the pots and it's nothing but I'm a big baby when I feel sick. It might take a few doses to build up in your system but I would take 2 if you don't feel better after a week to see if that helps. I'm hanging on a hair of hope that I don't have to deal with this forever, something has to give. I was laying in bed for an hour and it got to the point I had to get up.

Have you been tested for h. pylori or anything else?
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 12/1/2011 10:15 AM (GMT -6)   
I have had soooo many tests and nothing comes up abnormal but I live in fear until i get results each time...I think they tested for h Pylori before my gallbladder surgery..I see the new gastro doctor this afternoon at 2:30 so will let you know what he has to say...i took the carafate this morning and plan to take the domperidone in just a bit before I eat...I am praying so hard that it helps...I know what you go through---i think nausea is the absolute worst feeling---i have been nauseated almost five months now counting the time before my gallbladder removal...Honestly, I don't think i needed my gallbladder removed but it is too late now....
I hope you have a good day...By the way---have they ever tested you for mitral valve prolapse? I had the skipped and runaway heartbeat for years and then they found that was causing it----it causes lots of anxiety too---an echo-cardiogram shows whether you have it or not...just a thought----Were you A LOT better taking the domperidone? I am praying that is my miracle drug...he gave me 20 mg. so hopefully i will see a huge difference after I begin taking it regularly----did it make you anxious at all?I hope you have a great day----

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 12/1/2011 2:51 PM (GMT -6)   
Yes keep us updated!! I've been stumping my drs for 3 years on this. I requested my medical records and one of the reports from my surgeon says "complicated patient". Yup that's me! Nothing comes easy. I have not been tested for mitral valve prolapse that I know of. How do they test for that? The domperidone helped so much that I was like a crack addict looking for a hook up after I seen I couldn't order it from Canada (the whole 'must have it to survive' feeling). Lol I had no side effects at all from it. I think I make my anxiety worse by worrying about how I'm going to feel after I eat but the domperidone actually helped that knowing I took something that works, if that makes sense.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 12/1/2011 7:59 PM (GMT -6)   
I went to my new gastro doctor today and he took me off the dompridone because he says they only use it after erythromycin doesn't work---Supposedly the doperidone can cause an arrythmia---he says we might go back to it but he is trying this first---also, he upped my protonix and put me on more carafate and zantac---he thinks I have bile reflux---so to make a long story short, this is my protoccol for now---he is testing me for things which cause gastroparesis which I do have---he says if i don't have these underlying causes then it is ideopathic---I will let you know as this progresses but I certainly would have a gastric emptying test if you are still nauseous all the time---also a test for mitral valve prolapse is simply an echogram---

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 12/1/2011 8:17 PM (GMT -6)   
I wonder why he would want to try erythromycin first. That's an antibiotic, didn't know that was used to treat nausea? At least he has a plan though! Do you take protonix in the morning and at night? For some reason I can't take my meds in the evening, it raises hell in my stomach. Carafate would help with the bile reflux. I was taking questran powder for bile but didn't help. It was like drinking sand, very thick and gritty and sat in my stomach like a rock. The taste wasn't horrible but the texture was. What tests is he going to do to see what's causing gastroparesis? Quite interesting.

The thing I find odd about me is I can't drink thin flat liquids like water or juice. It seems like it comes up way too easy and just sits in my throat. But I can have soda and coffee just fine in moderation. Tonight I drank too much and feel like I'm going to float away!
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 12/1/2011 9:16 PM (GMT -6)   
Actually the erthromycin is used to improve stomach motility---He is giving me 40mg. protonix in the morning and zantac at night along with Carafate 3 times a day...I am confused too but will follow this protocol because people say he is the best diagnostician in town...He is running bllodwork for auto immune diseases, diabetes or some other abnormality which might have caused the borderline gastroparesis....It is scary to read about but I have spoken to people who have it and are doing well...If domperidone helped you so much, you may have it---I would absolutely demand a gastric emptying test because you have been nauseated for too long and I know how miserable that is---I honestly don't know how you are working---I do work sometimes but my job doesn't require rigid time constraints...

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 12/1/2011 10:49 PM (GMT -6)   
If they say he's the best in town, I'd follow it too. If it doesn't help, move on to the next thing. I've had my thyroid tested, gall bladder, hormones (since it started when I was pregnant), numerous blood tests that I couldn't even tell you what they were testing for. I read about people that are doing great too, just have to find the cause and right meds. I will call my GI tomorrow and suggest the gastric test again. I usually have half a sandwich for lunch around noon and I'm full the rest of the day so it very well could be. I know my intestines move very slow from 22 years of laxative use, pretty much killed all my nerves. I haven't worked steadily for 5 years. The first 2 years I stayed home with the kids. The last 3 have been because I've been sick. I've tried working but it doesn't last long. Eventually the nausea and fatigue will catch up to me. I started the job I have now this week. I'm cleaning from 6:30am until around noon. I've definitely had the nausea, flushing, sweating but I know if I don't eat or drink, I won't be sick. I have applied for disability but was denied. I'm going to refile after I get a further diagnosis with my pots since there's so many types. I haven't seen anyone get disability for reflux but I'm hoping pots will help push it through. What kind of work do you do?
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 12/1/2011 11:11 PM (GMT -6)   
i was a psychotherapist for fifteen years and had my own practice specializing in anxiety disorders, and for the last six years I have been in real estate.....i think you should apply for vocational rehabilitation.....i had clients who got it because of panic disorder...They pay you training in whatever you choose, give you a stipend to live on and even sometimes pay your rent...You need to go through red tape but I definitely think you would qualify...You have bad digestive issues which could be documented through your doctor.....You could even be trained in something you could do from home---like medical transcribing, real estate etc----that is just a thought but I know vocational rehab is a great outlet for some people....You are so young to be going through all of this----

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 12/1/2011 11:50 PM (GMT -6)   
I will definitely look into it. I haven't heard of that before. I am certified in medical transcription but the local offices that are hiring for it require experience. I'm currently taking online courses for accounting and just finished up a tax prep course. I also have my cna but that expires this month. I would love to do something from home. I have 3 kids (boys are 5 and 7, daughter is 2) and most days are hectic with their school, work, and appts for all of us. I have a few friends in real estate that have suggested it but I didn't want to spend the money for classes with the market as bad as it is. I'm also perfectly content sitting on my couch with my heating pad, my daughter, and a book during the day. Lol I decided to pick up this job for extra holiday money but my fiance has been working overtime so that helps. I don't think it would be so bad if my nights weren't awful and I could get to sleep at a regular time. I have lorazepam for when I have anxiety attacks that makes me drowsy but I don't like taking it unless I HAVE to.
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 12/2/2011 9:36 AM (GMT -6)   
I would definitely take the lorazepam when you need it---or xanax---that is a very safe drug---short half life---the problem with benzodiazepams which is that class of drugs, is the potential for addiction and abuse---However, people who are anxious about meds anyway won't get addicted because of the fear of even taking the drug....I cannot believe all you have been through at your young age---Do you still have your colostomy? I hope you get better and better---I think Domperidone is a great drug---I had a wonderful day of no nausea yesterday and I hope he puts me back on it---I have a habit of second guessing doctors and am trying not to do that this time....I will let you know how the blood work turns out...Blessings for a great day....

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 12/2/2011 2:05 PM (GMT -6)   
My PCP didn't want to prescribe it because it is addicting. But like you said, I don't like taking meds unless absolutely necessary. I can take it for a month and stop without any side effects. Yes I still have my colostomy. My GI at the time wasn't sure what was causing my intestinal problems. I couldn't have a bm unless I took laxatives, was like that from birth. My first 2 years was spent in Children's Hospital. Grew up living on laxatives. Had my first son when I was 20, got pregnant with my second son when I was 22. That pregnancy was hard, I didn't have a bm for 5 months which resulted in a scheduled c-section. My gyno said my colon was the size of a football and I needed to be seen asap. 2 months later I had my colostomy. Best thing ever!! It was the first time I felt normal and didn't feel like crap (no pun intended lol). I had no health issues after that, gained weight, was active, it was amazing, until I got pregnant with my daughter 3 years later. Now I have this mess to sort out but I wouldn't change it for anything. My dr said I can get it reversed but the nerves and muscles in my intestines are probably near gone since I could only take stimulant laxatives.

If you still have some domperidone left, can you take it? I second guess my drs too. Mainly my old surgeon because he kept saying my wrap is just fine but I had all of my old symptoms back in a matter of days. I hope you find relief soon!!
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~

lillye
Regular Member


Date Joined Jul 2011
Total Posts : 179
   Posted 12/2/2011 10:46 PM (GMT -6)   
I hope you begin to get better----Someone else on the forum wrote and said she saw your post and which said you were going to re-apply for disability and to tell you if it hasn't been over a year you can just take up where you left off and add your POTS diagnosis....You definitely deserve disability---you are young, with three kids and have multiple diagnoses...I think you will definitely get it---YOU DESERVE IT----i have felt good for two days and am no longer taking the Domperidone---My doc said not to take it until trying the erythromycin....If it doesn't work, I will beg to get back on it---nausea is miserable---as you know---I hope you are feeling better---

babygirl10150
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 12/3/2011 12:59 AM (GMT -6)   
Do you know what thread that was in? I did get a denial in the mail. It said I could appeal it within 60 days. I tried to file an appeal the day after I was diagnosed with pots but it was 62 days. I called and was told I had to start over completely which is why I requested my records. I've had so many tests that I can't remember the dates. Thank you for the kind words. It's been hard to deal with when people around me don't believe it.

That a great start that you are starting to feel better!! I'm getting excited for you! Have you tried the erythromycin? I had to beg to get domperidone to begin with so do what you need to do to get relief!
Michelle

~Diagnosed with POTS 10/11~
~Nissen redo #3 coming soon~
~Nissen redo again 12/13/10~
~Nissen redo 05/10/10~
~Nissen 12/14/09~
~Colostomy 07/30/06~
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