Gastroparesis caused by dysautonomia. What helps?

[Kris4444]

I have a complicated medical history, MCTD, dysautonomia (hyper pots), EDS, global GI dysmotility among other issues. Each specialist says that the disorder they are treating is what is probably causing my gastroparesis.

Currently I am going through a terrible flare with my GP and happened to have a bad episode of pots last night. I reached out to my neurologist to see if he thinks the two are related and he does believe that the autonomic dysfunction is causing the GP. 

How many of you believe that your GP is caused by your autonomic nervous system problem and what are you doing to effectively treat it?

I tried domperidone but had to stop due to prolonged QT waves. I took reglan for years but was having side effects so started iberogast in January. Up until the last 2 months I've been managing things but as of 2 months ago I've had to pull all meat from my diet. I was doing ok on fish and peanut butter but still having a lot of pain and bloating. My doctor has me on xifaxin and I'm almost done with it but I think it's caused more stomach pain.

I get really bad pain on my left side that always lands me in the hospital. I have gone a  year and a half without it but now have been battling it for almost a full week and it's wearing me down. When it gets like this the only option is to go to the hospital where they will admit me and take away food and water and help with pain management. I have had an ileus before so they take it pretty seriously even though they've never been able to pinpoint what is causing the pain. We also know that the antrum portion of my stomach doesn't work, that is the portion that grinds your food.

I'd love to hear from others whose GP is related to their dysautonomia and how they are treating it. Thanks!

 

[Guest ANCY]

Hello Chris,

I have gastroparesis and my Drs do believe it is directly related to my autonomic dysfunction. There are not that many great treatments out there and a lot is geared toward symptom management.

Have you heard of a gastric pacemaker? That is one option that maybe you could discuss with your dr. My GI Dr did not believe it was worth the risk for me to get one. 

Domperidone is one of the better drugs out there but unfortunate you can't continue with it. I had a prolonged qt on my EKG in March so cardio took me off of it for a while but I have been able to restart the medication and my QT has remained normal. But of course my dr gets daily reports from my pacemaker about what my heart is doing, that may be why he was agreeable to getting back on it.

Reglan was a no go for me as well, got the twitching so had to discontinue. They did try me on Mestinon, which worked great for 6 weeks and then just stopped working. They also had me give bethanechol a try, which helped a little with the GP, but dropped my bp because it made me loose to much water. I use Zofran for nausea control and that along with the domperidone are what helps me in terms of pharmaceuticals.

Something else that help me is constipation control, which I have to get rather aggressive with at times. The pain you describe on the left side sounces similar to when I have had both ile us and extremely clogged pipes... 

Sounds like you have already found some dietary changes which can be a big help. I always recomend keeping a food journal for a month to try and determine, the best you can, what bothers you and how. Do you know the general guidelines for GP diet? 

I currently have a j tube which supplies my calories (1400 a day right now) as well as the bulk of my fluids. Over the last 4 and 1/2 years whIle dealing with GP I have had both feeding tubes and IV nutrition for long periods of time, things seem to get better and worse with me so it's kind of a guessing game trying to treat my GP... The plan is to leave my current tube in for a year after I stop using it in order to be sure I'm able to stay off of it. Mine have been surgically placed so is more extensive than the usual g tube placements. 

I hope that you and your Dr are able to figure out what works for you! It is a bit of a learning curve dealing with it all and I still have not mastered symptom management myself lol! 

If there is any other way I could be of help please let me know! Feel free to PM me anytime if you like. You will be in my prayers and you are not alone in this.

[Kris4444]

Ancy,

Thank you for your reply! I am still really struggling and have been putting off going to the ER because my daughter is having a small procedure today and I know if they admit me I'll be there for a minimum of 3 days. My husband is going to take the day off tomorrow and we are going to go to the ER. The left sided pain has gotten really intense and the strange thing is that the area between my ribs is very, very sore. My only guess is that because of my bloating, the area between my ribs is stretching. At the same time though anything I put into my stomach makes everything worse. I do struggle with constipation but I have found a regimen that works really well, Linzess and Miralax. I do worry about an ileus but I have been able to go to the bathroom.

I've been dealing with this for years now. Botox injections were very helpful for me but my insurance will not cover them. I am hoping that they will not turn me away when I go to the ER tomorrow. I think what I need right now is no food or liquid for a few days as well as fluids and pain management.

[im4god2010]

On 7/13/2016 at 11:31 PM, Kris4444 said:

I have a complicated medical history, MCTD, dysautonomia (hyper pots), EDS, global GI dysmotility among other issues. Each specialist says that the disorder they are treating is what is probably causing my gastroparesis.

Currently I am going through a terrible flare with my GP and happened to have a bad episode of pots last night. I reached out to my neurologist to see if he thinks the two are related and he does believe that the autonomic dysfunction is causing the GP. 

How many of you believe that your GP is caused by your autonomic nervous system problem and what are you doing to effectively treat it?

I tried domperidone but had to stop due to prolonged QT waves. I took reglan for years but was having side effects so started iberogast in January. Up until the last 2 months I've been managing things but as of 2 months ago I've had to pull all meat from my diet. I was doing ok on fish and peanut butter but still having a lot of pain and bloating. My doctor has me on xifaxin and I'm almost done with it but I think it's caused more stomach pain.

I get really bad pain on my left side that always lands me in the hospital. I have gone a  year and a half without it but now have been battling it for almost a full week and it's wearing me down. When it gets like this the only option is to go to the hospital where they will admit me and take away food and water and help with pain management. I have had an ileus before so they take it pretty seriously even though they've never been able to pinpoint what is causing the pain. We also know that the antrum portion of my stomach doesn't work, that is the portion that grinds your food.

I'd love to hear from others whose GP is related to their dysautonomia and how they are treating it. Thanks!

 

Hi there I am new to this site and I just saw yoru post. Well I am in the same boat. I have Gastroparesis (slow mobility of the stomach) and before I knew about POTS it was being caused by my Scleroderma and lupus. Now my Gastro Dr put me on reglan and protonix (that helps with stomach acid) however the reglan you are only suppposed to be on it for a certain amount of time and then off of it...I have been on it for three years to long....I see you tried teh domperoidone I am seeing where it caused some heart problems and that is soemthing not good he mentioned that to me about that medicaction and so I said no thank you...no more of those problems have enough thank you.

I have recently moved and have a new doctor that is looking into somehting called 

OCTREOTIDE-it si an injection you give yourself and it is supposed to help with bacteria in teh stomach and stomach mobility. Now I have not heard from him about it yet but he is working on it worth asking about.

I have had teh side abdominal pain as well and it has come on in the last week and a half now I am in some serious pain but I hate going to the Hosptial and I hesitate but I might have to pain is to much 

I see what you have had to go through and I would be flippin. I am going to call the doctor today and if I get on this medication I will let you know. I hope that this helps and am also going to have my doctor look into some of the things you have listed and see if maybe that is causing some issues with me.

[SarahA33]

Hi im4god,

Really bummed out to hear that you have to deal with gastroparesis in addition to your Dysautonomia diagnosis. It's no fun! I have this also. I wanted to share a recent conversation with my GI doctor regarding this. My abdominal pain was horrendous and I was vomiting basically every morning.  I learned a great deal and I was upfront that this was now affecting my life. He said the Dysautonomia diagnosis complicates things, but I never knew it was technically a neuromuscular disorder.  The stomach is technically not paralyzed like I originally thought and it seems to be both a sensory/muscle problem (neuromuscular disorder) Some tips incase you or others aren't aware.. My dr. told me to stop eating after 6pm, as in the evening we're obviously more prone to lying down, and he thought gravity would basically help pull the food down so that it wasn't just sitting there all night. I haven't thrown up since I've done this! Yay! He also rec. eating smaller portions throughout the day and if possible, take a small walk or do something requiring movement after eating.

I have had the emptying test (which for those unfamiliar is a test where you eat a meal, then watch the pace at which it empties & measures the amount of food left in stomach at 30,60, 90 and 120 min. I was given a radio-traceable egg, toast and a glass of water - to measure both solid and liquid) This is apparently a gold standard in gastro testing, so at this point I'm just waiting for my insurance to approve a dietician/nutrition visit to go over "FODMAP diet (low Fermentable Oligosaccharides, Disaccharide, Monosaccharides and Polyols).  I haven't really done any research on my own about this diet - I think it is carb's that are found in a lot of foods.  If you or anyone has heard of this I'd appreciate the feedback.

Also, he said Zofran is used by a lot of doctors but he doesn't rec. that since it's not effective at all in emptying and only controls nausea.  (Not for me b/c I'm allergic to it) so he has put me on Meclizine Rx - this is off label use as Meclizine is an Rx Antihistmaine and used for Vertigo. This has helped nausea and gastro pain (abdominal cramping, burning right between my belly button and chest. Literally right under my chest, above the ribcage &  indigestion on a routine basis). He said if this didn't work, we would try another anti-histamine rx, Ceproheptadine, which controls gastro symptoms, also this is neurotransmitter that effects serotonin ( so I wonder about the gut/brain barrier as he explained a lot of serotonin is produced in the gut) it also has calcium channel blocker properties. I wonder about this however because I take ivabradine for my HR and one of it's major interactions are calcium channel blockers. Off topic, lol.

I did have the "breath test" also, where you breathe into the machine filled with a powder mix to rule out bacterial infections "gastric infection vs mechanical infection" he referred to it as I believe. I tested negative for this. So, again, just thought I'd share some things he mentioned. If anyone has any tips on their treatment I'd very much like to hear. Wishing you all the best!

 

 

[Kris4444]

I'm sorry to hear you are having a rough time. As I write this I'm sitting at the rheumatologist office waiting to be seen. Thankfully, my autoimmune disease seems stable but I'm still struggling with the GP.

After my last hospital stay a week ago I went back on the domperidone after having 2 EKGs to make sure my QT waves were back to normal. They are, so we are giving it another try. 

Keep me posted on this new med. I'm hoping it works for you and you get some relief! 

I tried posting this a bunch of times from the doctor's office but it wouldn't post. Sorry for the delay!