Gastroparesis, POTS EDS etc (treatment UK)

[EnduringAngel]

I have EDS3 as well as ME etc.
And currently Im really struggling a lot with gatroparesis & POTS.

I was wondering what medication etc people take for it? I had really wanted to treat the gatroparesis naturally, but my constipation is getting so severe, I know I will need to speak to my consultant about meds, but am already on so many others.

Just wondered if there were people on here with the same issues, and what you would recommend?

Thanks
A x

 

[invisiblejungle]

Hi EnduringAngel,

I developed gastroparesis about a year ago, and it's quite possibly the most distressing symptom I'm dealing with. I've lost almost 30 pounds.

It seems that there are different types of gastroparesis. Some people have mostly stomach issues (slow digestion), while others have lower bowel issues (constipation). Is constipation your main issue? I know some GPers have used triphala with success, even triphala enemas.

You should check out http://www.inspire.com/groups/agmd-gi-motility if you haven't already. It's a great GP-related forum.

 

[EnduringAngel]

Mine is more constipation, which makes me sleep more, so drink less making it worse. Am sure my being bed bound so much doesn't help. My constipation seems to be higher up.
I will def have a look at that link. Thanks for sharing.
A x

 

[Mya Symons]

I am very sick right now with gastroparesis. I have lost 30 pounds in 4 months and when I eat the pain is bad. I am taking Amitiza which has worked great for constipation, but it does not help move food out of the stomach. I am also taking digestive enzymes that help a little bit, but they are not enough. If anyone has found a medicine that helps move food out of the stomach, please let me know. I am desperate right now. Thank you!

 

[Sushi]

I am very sick right now with gastroparesis. I have lost 30 pounds in 4 months and when I eat the pain is bad. I am taking Amitiza which has worked great for constipation, but it does not help move food out of the stomach. I am also taking digestive enzymes that help a little bit, but they are not enough. If anyone has found a medicine that helps move food out of the stomach, please let me know. I am desperate right now. Thank you!

Not a medicine, as such, but it is known that low serotonin can be related to impaired peristalsis. I am taking 5 HTP to help with this.

One of the major roles for serotonin in the gut is thought to be regulation of the peristaltic reflex, which consists of both PROXIMAL CONTRACTION and DISTAL RELAXATION. In both cases, 5HT primarily acts on vagal afferents, which subsequently invoke a complicated reflex loop (which I simplified considerably by having the 5HT “neuron” act directly on the ACh and NANC neurons). http://www.d.umn.edu/~jfitzake/Lectures/DMED/LowerGI/PhysReview/Serotonin.html

Sushi

 

[Mya Symons]

Not a medicine, as such, but it is known that low serotonin can be related to impaired peristalsis. I am taking 5 HTP to help with this.



Sushi

Thanks Sushi, but I am already taking Savella, 5-Htp and Sam-e. It just keeps getting worse.

 

[Violeta]

This is what people with porphyria do for gastroparesis, they take some glucose 10 minutes before eating. If that isn't strong enough, they add some Mexican coke, which is coke made with the old recipe using sugar instead of high fructose corn syrup.

 

[invisiblejungle]

I am very sick right now with gastroparesis. I have lost 30 pounds in 4 months and when I eat the pain is bad. I am taking Amitiza which has worked great for constipation, but it does not help move food out of the stomach. I am also taking digestive enzymes that help a little bit, but they are not enough. If anyone has found a medicine that helps move food out of the stomach, please let me know. I am desperate right now. Thank you!

Hi Mya,

There are several medications that are used for gastroparesis. Erythromycin has powerful stomach-emptying effects, but it isn't something that should be taken long-term. There's also metoproclamide, which blocks dopamine, leading to an increase in acetylcholine. However, metoproclamide can have some serious side effects.

Domperidone is similar to metoproclamide but is much safer. It seems to be the most-preferred med for gastroparesis at this time.

There's also mosapride, which is considered to be a third-generation prokinetic. It's a selective agonist for the serotonin receptors in the upper GI. It's not available in the US, but you can buy it from online pharmacies. It might be worth trying, but for me, it only worked for a few days.

Iberogast is a German herbal formula that has helped some people with gastroparesis. The main herb, clown's mustard, functions as a partial serotonin agonist.

I recommend checking out http://www.inspire.com/groups/agmd-gi-motility, a forum dedicated to gastroparesis.

 

[EnduringAngel]

I had terrible side effects with metoproclamide and although Domperidone is the next one used and does have less side effects I refused to take it after reading this weeks newspapers reports about it and the number of deaths it has caused and is now being investigated.

Check out dr myhills website for tips, I use ascorbic acid now which works well, also ginger can help. I also use vsl#3 probiotics and drink amazing grass smoothie and soups to keep calories up.

but I would def try ascorbic acid first as vit c has been used to really help ME and immune probs too.

 

[Mya Symons]

Hi Mya,

There are several medications that are used for gastroparesis. Erythromycin has powerful stomach-emptying effects, but it isn't something that should be taken long-term. There's also metoproclamide, which blocks dopamine, leading to an increase in acetylcholine. However, metoproclamide can have some serious side effects.

Domperidone is similar to metoproclamide but is much safer. It seems to be the most-preferred med for gastroparesis at this time.

There's also mosapride, which is considered to be a third-generation prokinetic. It's a selective agonist for the serotonin receptors in the upper GI. It's not available in the US, but you can buy it from online pharmacies. It might be worth trying, but for me, it only worked for a few days.

Iberogast is a German herbal formula that has helped some people with gastroparesis. The main herb, clown's mustard, functions as a partial serotonin agonist.

I recommend checking out http://www.inspire.com/groups/agmd-gi-motility, a forum dedicated to gastroparesis.

Thank you very much for the information. I am going to have my gallbladder taken out and also have a gastric emptying test soon. I am going to bring the names of these medicines to my doctor. Thanks again.

 

[kangaSue]

I have tried everything mentioned here and a lot more for gastroparesis. Only domperidone was helpful until I chanced on nicorandil (Ikorel) which significantly reduced the pain from eating, improved stomach motility and raised my blood pressure. It was later found that I was getting insufficient blood flow to the bowel, a condition called Mesenteric Ischemia.
POTS is also likely to contribute to poor bowel blood flow.