Jump to content



Recommended Posts

First I'd like to thank all of you for responding so quickly and thoughtfully to my entry. I can't tell you what a relief it was to have those that understand exactly what I'm going through. Meghan, april, lisa thank you for your support and letting me know that I am not the only "kid" out there going through this. Brarrose, Nina, Elaine, Katherine, thank you for the links to the websites and the support of your struggles with getting a diagnosis also, and Margeret thank you for telling me about Dr. Rowe at John Hopkins, and also I wish your daughter a very happy 18th birthday!

I looked at the websites and I was THRILLED to find that DYNA has a site with tons of information and also a support group for children and young adults..i showed my parents and they are very glad that i found this website! I of course will be joining DYNA as well. Also to anyone feel free to write to me for support as well, as I will be using this site to keep you updated on any medications, testings and doctors that help me in finding a proper diagnosis for the type of dyautonomia i specifically have, thus far I have been diagnosed by my cardiologist and by and electrophysicologist at Columbia NY Presbetrian Hosptial after having had a tilt table test done. I am scheduled to have neurological tests done next week, I have NO IDEA what type of tests they will be doing..but i'll let you all know how it goes.

this is a totally different question...

Thus far I am on Synthroid for hypothyroid symptoms, and Aciphex for GERD....I was on Zelnorm (because part of my autonomic nervous system problems are that i have a sever motility problem in my GI tract) but it made my stomach pain and intestinal pain worse....I just started it again today and it made all my other symptoms worse, my legs went weak, my head was throbbing and the intestinal and stomach pain was worse and my vision was blured. Has anyone else with gastrointestinal motility problems been prescribed Zelnorm? if so did it help the symptoms?

thanks again


Link to comment
Share on other sites

I think zelnorm helps me, although it is more like a bandaid than a real solution. I would like something better. I actually take ultram (an opioid pain killer) for GI pain and lower GI distress/rapid motility. Without it, I suffer so much. A dr. at JHU gave it to me, but he left there, I think. I take zelnorm because my stomach is almost paralyzed and eating is terrible for me (although that has not seemed to stop me. I could eat chocolate through just about any level of suffering- I am just unable to follow instinct). The zelnorm pushes the food through and makes me hungry for real. I take a 1/4 pill before meals and before bed. The only side effect I had was emotional lability and that was in the beginning only. You should weigh the negatives and positives of any medication and decide if it is worth it.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...