http://health.groups.yahoo.com/group/ptc/ This is a mailing list for those who suffer from PTC. Family members, friends and loved ones are not only welcome but encourag Thu, 05 Nov 2009 13:29:07 GMT Kenyon Smith http://health.groups.yahoo.com/group/ptc/message/28651 http://health.groups.yahoo.com/group/ptc/message/28651 Hiya ptc family, I ran across a devotion for today that is helpful to any of us ptc'ers who are spiritual; Here's the link: Thu, 29 Oct 2009 12:06:26 GMT starrieangel03 http://health.groups.yahoo.com/group/ptc/message/28650 http://health.groups.yahoo.com/group/ptc/message/28650 Wow! It's really disheartening to hear so many issues with the shunts! I'm not the sufferer of PTC, but my best-friend is. She is allergic to sulfa, a main Thu, 29 Oct 2009 04:47:27 GMT jwtooblsd blessed http://health.groups.yahoo.com/group/ptc/message/28649 http://health.groups.yahoo.com/group/ptc/message/28649 I am taking Lamictal for seizures and my neuro said it is a good med, even in the long run. I also am on diamox, lasix and a eyedrop to help keep fluid out of Thu, 29 Oct 2009 03:58:10 GMT SherylRB@... http://health.groups.yahoo.com/group/ptc/message/28648 http://health.groups.yahoo.com/group/ptc/message/28648 I implore all of you who may have had an abnormal MRV to seek an Interventional Neuro-radiologist to explore this further. We were told that our daughter's Thu, 29 Oct 2009 03:45:35 GMT Daniel Mcneill http://health.groups.yahoo.com/group/ptc/message/28647 http://health.groups.yahoo.com/group/ptc/message/28647 HI Carol, I don't think you should feel like a quitter - you gave it your best and sometimes our bodies just don't respond the way we have in mind. I learned Thu, 29 Oct 2009 02:49:49 GMT Carol Goodness http://health.groups.yahoo.com/group/ptc/message/28646 http://health.groups.yahoo.com/group/ptc/message/28646 Well I did the dimox it did not work for me so i take 500 mil of Tompax and i have spinals every 3 to 4 months but after almost 3 years i have thrown in the Wed, 28 Oct 2009 23:26:54 GMT Daniel Mcneill http://health.groups.yahoo.com/group/ptc/message/28645 http://health.groups.yahoo.com/group/ptc/message/28645 Hello, I took depacote as one of the anti-seizure meds - lost a ton of hair and had tremors so bad I could barely hold a fork to eat. The side affects of both Wed, 28 Oct 2009 23:17:15 GMT Daniel Mcneill http://health.groups.yahoo.com/group/ptc/message/28644 http://health.groups.yahoo.com/group/ptc/message/28644 Hello, I've never had a shunt placed - been diagnosed with PTC since early 2002 - have done the diamox, topomax, lasix etc - and any number of anti-seizure Tue, 27 Oct 2009 16:02:18 GMT SherylRB@... http://health.groups.yahoo.com/group/ptc/message/28643 http://health.groups.yahoo.com/group/ptc/message/28643 Also remember that your CSF pressure varies during the day, so a normal pressure does not rule out PTC, however an elevated pressure will confirm the Tue, 27 Oct 2009 11:38:00 GMT shgray76103 http://health.groups.yahoo.com/group/ptc/message/28642 http://health.groups.yahoo.com/group/ptc/message/28642 the only test for PTC is a lumbar puncture to see how high the spinal fluid pressure is in your back. The eyes, blackouts, and other side effects are just Mon, 26 Oct 2009 20:51:30 GMT cannon http://health.groups.yahoo.com/group/ptc/message/28641 http://health.groups.yahoo.com/group/ptc/message/28641 I was told 4 years ago that I had a pituitary adenoma, now a new doctor at vanderbilt says it's an empty sella, she also thinks i may have PTC, due to constant Sun, 25 Oct 2009 05:30:39 GMT softndark2 http://health.groups.yahoo.com/group/ptc/message/28640 http://health.groups.yahoo.com/group/ptc/message/28640 I I made a comment a few days ago, but I have been so sick with my PTC that I haven't read all the comments, and been able to comment. I live alone so it's Fri, 23 Oct 2009 21:44:00 GMT Wendy Lameira http://health.groups.yahoo.com/group/ptc/message/28639 http://health.groups.yahoo.com/group/ptc/message/28639 my mother took depacote for seizures. I guess thats what they give for the PTC anti seizure meds. Why won't she take it. Its better than hurting. Sometimes the Fri, 23 Oct 2009 19:04:19 GMT SherylRB@... http://health.groups.yahoo.com/group/ptc/message/28638 http://health.groups.yahoo.com/group/ptc/message/28638 Leslie, I am REALLY sorry to hear your sons are not doing well. Hang in there. It's hearbreaking to have to watch your child suffer. I wish I could do Fri, 23 Oct 2009 15:03:24 GMT Shannan Bridgewater http://health.groups.yahoo.com/group/ptc/message/28637 http://health.groups.yahoo.com/group/ptc/message/28637 My daughter’s problem with the shunts is that they kept failing on her or would become infected. She lost a shunt, on average, every 6 months. That was a