Gastroparesis/Delayed Gastric Emptying caused by Trileptal?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

rory

New
Messages
61
Reaction score
0
Points
0
Hi
I was diagnosed with gastroparesis which is like a partially paralysed stomach last week, so basically my stomach takes forever to process food. Anywho after a year of constant nausea, random vomiting, weight loss, severe belching, tiredness, just feeling out of sorts etc i got the diagnosis, the gastro guy told me to lose weight (i am quite heavy) and promptly discharged me from his service, didnt like him from the start and now i know why.
My GP is of the opinion its the trileptal that is causing it as there seems to be no other source, and i just happened to be seeing my neuro this morning and they didnt really confirm nor deny it, they lowered my morning dose by 150mg to see if that makes any difference but as i say were really noncommittal about the whole thing.
So my question is this: had anyone been diagnosed with gastroparesis because of trileptal? or any AED, my GP says because AEDS calm nerves it makes sense, i dont know, I would have had a huge problem if the neuro wanted me to come off the trileptal as it has been a dream of a med for me it really has, little to no side effects, that i am aware of anyway. SO help please if anyone has heard of this.
Good News Front, after 3 years of begging and being fobbed off with various reasons i have been okayed to drive!!!!!!!!!!! I am ecstatic, its like a Christmas miracle.
 
I seem to be on the other side of the problem.
My stomach doesn't take too long, it doesn't take long enough.

The digestion problems I suffer from are linked to my time on the following AEDs combinations.

Trileptal & Depakote
Trileptal & Topamax
Trileptal & Zarontin
Trileptal & Zonegran
Trileptal & Keppra

Trileptal was started before the others were added. Each of the others caused me to have severe stomach and groin pain. I ended up in the emergency room multiple times. There were times when the pains hurt me all over. I felt pain in my stomach, groin, back, and chest. In the E.R. they runs various tests, give me pain medicine, and wait. After a few hours they'd release me. This was the cycle for Depakote, Topamax, Zarontin, Zonegran, and Keppra.

Each time between new AEDs, I'd be weened off to just Trileptal. I had no stomach issues during that time. Once the new AED was added, boom it was back.
I was refered to a gastroenterologist to find a better solution. After several specialized tests, the doctors found that those aeds really messed up my digestive system. I ended up suffering from kidney stones, ulcerative colitis (UC), irritable bowel syndrome (IBS), gallstones, etc.

My gallbladder was so bad, I needed to have it removed. :( Although my kidney stones don't bother me. I do need to take medicines (antispasmodic & diarrhea) for my ulcerative colitis (UC) and irritable bowel syndrome (IBS) daily. :(

It's been at least five years since that surgery, and I still am suffering from ulcerative colitis (UC) and irritable bowel syndrome (IBS) flareups. Some days are better than others. I need to plan my meals according to my activities. :(

_______________________________________________________________________

AEDs work differently person to person. In your case it sounds like you may need a
daily laxative. You need to talk with your GP about it.

Remember you need to take the medication properly.


I hope you can get your problem under control. :)
 
Wow, that is messed up, it would appear that trileptal does not like to be mixed with things. Maybe that is my problem too, I have a lot of stomach and chest pain, but that is the gastroparesis I'm told, I am investigating things i can do to lessen the symptoms, I am taking anti-emetics by the bucketload and peIppermint oil. I am malnourished and i am a big guy so it doesnt look like i would be, but I am, and as a result am listless and lethargic.
I have IBS and swing between constipation and diarrhea anyway but the former is worse since this gastro evil. I'm just blue in the face taking pills upon pills and then more pills to counteract the side effects of other pills and all the time new and wonderful health problems keep cropping up. I dont know
I will be working with my GP to try and sort this out and will try anything at this stage, the nausea and constant belching are the worst.
 
I have celiac disease, and more commonly have constipation side than diarrhea although I can have both. My GI specialist has me taking Restorlax/Laxaday/Miralax (all the same stuff - I just get whichever one has the best price). The first two are available in Canada and the third is US. I have been taking it every day for over 4 years, and it does help. It doesn't trigger gas to form like some laxatives and also no nausea.

You may already know this, but people with IBS have a higher rate of celiac than the general population. Have you ever been tested for this? I know there is debate about whether gluten intolerance is a true condition, but giving the existence of this condition the benefit of the doubt, even if you do not have celiac disease you may have "gluten intolerance", which would not show up on a celiac panel. Worth asking your GI specialist about.

It is best to be tested for celiac before going gluten free, but if you do not get anywhere with your Drs., you could try going gluten free on your own. It is not easy and you would have to go COMPLETELY gluten free (ie. no cheating here and there) to see if you feel better. One bit of gluten could set your whole system right back and you would never get a clear picture as to whether a diet free of gluten works for you.
 
Hi masterjen
I have often wondered over the years if gluten was a problem, i think I should finally get it figured out. I usually take lactulose for constipation, i find it great, but we do have movicol in the house which is the same as the ones you mentioned, its irish. I will get this sorted out
 
Good luck rory and let me know what comes of all this. Who knows, what you learn may turn out to benefit me, too. GI issues are no fun!
 
Back
Top Bottom