15th March 2008
Hello all!
I have also been diagnosed with Gastroparesis. My score on the emptying test four years ago was 115. High end for the 60-90 norm, but not enough for my gastroenterologist to diagnose. He diagnosed me with colitus and GERD at that point and put me on AciPhex (My god I love that pill), famantodine and told me colitis goes away on its own. The problems I had then, eventually got better. This past summer, I started getting sick on and off for 3-4 days at a time. It was frustrating but another endo/colonoscopy showed nothing really abnormal. Actually EVERYTHIGN showed nothing was abnormal and I was convinced it was in my head! Finally, after ending up in the hospital due to a 5 day vomiting cycle, he re-did the emptying scan and it was at 265. >.< it got markidly worse than 4 years ago. I'm at the point that nothing seems to pass and for 3.5 weeks i've eaten VERY little else than Cream of Wheat. Thank goodness I don't hate it.
I tried Reglan 4 years ago and the side effects were very bothersome. Twitching, excitability, heart racing etc etc. My doc remembered this and finally prescribed the domperidone. It's taking it's sweet time getting here -I was told 4 weeks tops. I'm averaging 5lbs a week weight loss right now, thank goodness I had some weight to lose or I'd be in trouble right now.
I've read every single page of the old thread and one thing I didn't see addressed was the persistant nausea and treatment for THAT. I understand the way Gastroparesis works and I have a long road ahead of me finding foods I can eat and amts that work for me. The problem is that I have no choice but to work every day. I'm a single mom of 2 boys and if I don't work, bills are nto paid. I went to my PCP originally in Oct and he prescribed me Hydroxyzine (Vistiral). I took it as needed when the vomiting cycles became more than 2 or 3 hrs. At first it totally made me sedated for at least 48 hrs after taking it. Now I can tolerate it as long as I have about 8 hrs of sleep. It seems to help wtih the nausea.
I am hopeful somedays and entirely discouraged others. I'm only 31 years young and the prospect of dealing with this forever is daunting, to say the least. I actually cried when I read these boards. A small part of me still felt this was all in my head. My gastro doc was soo vigilant until he found the diagnosis and now I feel very alone and without the answers I am seeking desperately.
I'm concerned about the Domperidone as the doc only said it woudl cause dry mouth and headaches. Does it have any other effects that anyone is aware of? I'm also trying to grasp why it isn't available in the U.S. ?
Also, has anyone heard anything regarding TZP-102 ? It's the new drug due for 2010 as a treatment for Gastroparesis. Perhaps for those that aren't able to tolerate Reglan or don't do well with Domperidone?
Thanks for reading, I've felt alone for so long that this is quite new to me.. knowing that others feel as I do.
I have also been diagnosed with Gastroparesis. My score on the emptying test four years ago was 115. High end for the 60-90 norm, but not enough for my gastroenterologist to diagnose. He diagnosed me with colitus and GERD at that point and put me on AciPhex (My god I love that pill), famantodine and told me colitis goes away on its own. The problems I had then, eventually got better. This past summer, I started getting sick on and off for 3-4 days at a time. It was frustrating but another endo/colonoscopy showed nothing really abnormal. Actually EVERYTHIGN showed nothing was abnormal and I was convinced it was in my head! Finally, after ending up in the hospital due to a 5 day vomiting cycle, he re-did the emptying scan and it was at 265. >.< it got markidly worse than 4 years ago. I'm at the point that nothing seems to pass and for 3.5 weeks i've eaten VERY little else than Cream of Wheat. Thank goodness I don't hate it.
I tried Reglan 4 years ago and the side effects were very bothersome. Twitching, excitability, heart racing etc etc. My doc remembered this and finally prescribed the domperidone. It's taking it's sweet time getting here -I was told 4 weeks tops. I'm averaging 5lbs a week weight loss right now, thank goodness I had some weight to lose or I'd be in trouble right now.
I've read every single page of the old thread and one thing I didn't see addressed was the persistant nausea and treatment for THAT. I understand the way Gastroparesis works and I have a long road ahead of me finding foods I can eat and amts that work for me. The problem is that I have no choice but to work every day. I'm a single mom of 2 boys and if I don't work, bills are nto paid. I went to my PCP originally in Oct and he prescribed me Hydroxyzine (Vistiral). I took it as needed when the vomiting cycles became more than 2 or 3 hrs. At first it totally made me sedated for at least 48 hrs after taking it. Now I can tolerate it as long as I have about 8 hrs of sleep. It seems to help wtih the nausea.
I am hopeful somedays and entirely discouraged others. I'm only 31 years young and the prospect of dealing with this forever is daunting, to say the least. I actually cried when I read these boards. A small part of me still felt this was all in my head. My gastro doc was soo vigilant until he found the diagnosis and now I feel very alone and without the answers I am seeking desperately.
I'm concerned about the Domperidone as the doc only said it woudl cause dry mouth and headaches. Does it have any other effects that anyone is aware of? I'm also trying to grasp why it isn't available in the U.S. ?
Also, has anyone heard anything regarding TZP-102 ? It's the new drug due for 2010 as a treatment for Gastroparesis. Perhaps for those that aren't able to tolerate Reglan or don't do well with Domperidone?
Thanks for reading, I've felt alone for so long that this is quite new to me.. knowing that others feel as I do.