Hi, I am a caregiver of my husband, Dean who has CVS. He is 53 years old and has been dealing with this awful disorder since 1989. Of course at first we...
Scoutmom32, I received your email from last night however I am unable to reach you because my email replies keep bouncing back due to your email not accepting...
Scoutsmom32, My thoughts and prayers are with you and yours. Here is the information you requested. Please also visit www.cvsaonline.org and request the free...
My son has had horrible "episodes" of CVS for over a year. Within the past few months, he has tried Topamex which is an anti-migrane medication. Believe it...
has anyone with CVS ever been told they have a high level of prolactin? I think I have cvs, and the latest finding is that my prolactin level is abnormally...
A Very Big Hello to all Group members. My name is Greg and I have just joined up. I live in the UK and I have suffered with CVS since I was a boy. I am now in...
Hey Greg, and welcome to the group! My name is Brittany, I'm 17 & have CVS since I was a baby. Again, welcome to the group, I'm glad you found this. Britt ...
It's been a long time since I've been to this group. My boyfriend, 29, suffers from this syndrome. He was diagnosed in the summer, and although he is on...
Hi, Try Dr. Richard Boles at Children's Hospital Los Angeles. He's a geneticist who specializes in CVS. http://tinyurl.com/ds5n4 I use coq10 from healthy...
Also, I forgot to mention, I make sure my son eats only uncured meat. No sodium nitrates! No MSG. Check all food labels. No chocolate. We know these are his ...
Hello everyone! My name is Cami and my husband has been diagnosed with CVS. He is 34 and I am 29. We have been together for 4 years and maried for two. He has...
Welcome Cami, The best advice I could give you is to go to the website and read every historical e-mail since the beginning and especially the past few years....
Hiya Cami and welcome, I am a new brand new member also. Yes, I totally agree with Ann. I have suffered this problem for many years but I remain hopeful that a...
Hiya Britt, many thanks for such a warm welcome. I am glad I found this site. I tried the main CVS site but it does seem so involved. This is a breeze by...
Hiya scoutmom, many thanks for your welcome. I hope we can all help each other. Lets do our best to solve this jigsaw puzzle together. It sounds as though you...
I just wanted to say thank you for all of those who were kind enough to share your experiences and advice. I really appreciate as does my boyfriend. The...
My 27 year old son has struggled with CVS for about 5 years. In addition to the vomiting, the abdominal pain would be excruciating. They finally developed a...
Your story should be inspiring to many. Unconventional treatment for an unconventional illness. Congratulations on his improvement. Help him look at his...
I was just watching Discovery channel and saw a show called Mystery Diagnosis. Interesting, but I thought someone might want to know about this. A quote from...
Have been hearing about this show on the Chiari listserv. My son, age 18, has had CVS since infancy; basilar migraines started up around age 13. In Spring...
My husband was diagnosed with CVS and we have nver heard about prolactin levels being high. Although I do have a co-worker that has an isue with prolactin but...
Okay-I now I sound awful but I'm at wits end . Money,doctor bills,my husbands sickness, him taking a voluntary layoff from work-its the holidays you cant just...
I have a 3 1/2 year old daughte who has CVS, I am pregnant again and am wondering if this syndrome can be passed to another child of mine, does anyone have...
Hello all. I have a son who has had CVS for just over 2 years now. With every episode I feel there has got to be a reason for this. It breaks my heart to...
I have identical twins and one has it and one doesnt. My oldest doesnt have it either. The neurologist says that one twin may have it while the other doesnt...
I have noticed my sons heart rate go throught he roof also. It is the stress of not feeling good. Ask your doctor what it shouldbe so you can keep an eye on...
anyone know how to get through the workday when you're feeling like complete crud? I took a zofran this morning to stop the vomitting and had to come into...
Yes, our son also has an extremely fast heart rate when sick.... Our specialist said this is typical of vomiting in general? with the body under such...
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