POTS and Gastroparesis

[DSM3KIDZ]

Well I have another question. Does anyone here have GP and POTS ? Mine are both caused by autonomic neuropathy. I was dx in Jan 2005 with GP and POTS in Feb 2005. I find GP extremely hard to live with the constant nausea. I might have 2-3 days a month with no nausea and I think there might be a miracle happening but than I get disappointed every time. How do you cope with this?

Dayna

[MightyMouse]

I don't know what to tell you other than what I said in your other thread: miralax, and increase activity.

I have nausea every day for as long as I can remember. I only have difficulty when the pain kicks in too.

Nina

[DSM3KIDZ]

Nina -is miralax a prescription?

[MightyMouse]

Yes, it's a prescription--and is also available as a generic, which is what I use, and that form is called "glycolax". It's a powder and has no flavor and is not gritty. I mix mine in a 1/4 glass of juice first--it wont dissolve completely yet, but I get it started that way--and I use a fork so I can get the stuff out of the bottom edges of the glass. Then I either add water or diet ginger ale to fill the glass the rest of the way, then give it a quick stir. I don't chug the stuff, I just drink it like any other beverage.

It was prescribed by my gp and approved by my gastro doc. My gastro initially wanted me use Zelnorm, but my gp thought with my med sensitivities, it would be safer to go with miralax first. Also, as i said earlier, it promotes preristalsis (gi contractions that move stuff along the tract). It doesn't have any bad side effects for me other than occasional loose bm's, which I can deal with much better not going at all.

Hope you find something that helps you. I also have sublingual levsin to stop gi spasms when the pain gets too much, but I don't like to use it because it slows my guts down more. I only take the levsin when the spasms keep me from sleeping.

Nina

[leah1321]

I use a very small dosage of zelnorm. I went up almost 20 lbs since I started it! I was underweight before and now want to drop a few of those lbs. I still have nausea a lot though.

I also still get esophageal spasms. However, they are not as bad, not as often and I feel hungry and am now able to swallow alright. I was eating at least one liquid meal a day, then one larger regular meal and a few very small snacks. Now, I eat actual meals, although mornings still kill me so I eat a supplement bar in the first few hours after I wake up. i take zelnorm before meals and before bed. I also take both nexium and protonix and that gives me more than 26 hours of coverage instead of the 20 I was getting with protonix alone. I was waking up choking beforehand and had a constant hoarse voice. I also take NuLev as needed, the kind that dissolves on the tongue, and it helps the esophageal spasms if I take it early enough. Ativan helps the esophageal spasms too. There is also a diet that helps. I think you can google it. Your doctor should have it. This diet really makes a HUGE difference! There is a lot more to think about, but I think these points were most essential for my improvement.

Leah

[leah1321]

I forgot- i have gastroparesis, but I also have a rapid lower GI tract. They can go together with us. There is another medicine that I was told to try that helps relax muscles called Lotronex, but I got scared because I had to sign something for the FDA agreeing to side effects or something and I just was not cool with that. Zelnorm can cause bad diarrhea in people with rapid GI motility in the lower tract, which is why I take only 1 mg at a time instead of 6 or more like most people take. It seems to be more than enough for me. I can't take miralax though because of the possible problems it could cause in my intestines. I even take ultram to slow my lower GI tract and to help with the terrible pain I get in the lower GI tract just existing. Also, I get esophageal spasms that feel like a heart attack mixed with food poisoning, just awful.

Leah