Adults with Cyclic Vomiting Syndrome - Melinda - Email from an Adult with CVS

Greetings,

Sorry I haven't told you my story my story sooner! I am Mindy McGinnis, 38 years old, who been having CVS attacks despite supreme health 5 years ago. The 1st few years it only occurred in April and October, for three to five days. I toughed it out at home without an IV. Vomiting bile every few hours, day and night. The last few years CVS it has been attacking every 2 to 3 or 4 months for or 8 days running! I must get an IV at home on the first day or my veins are so dehydrated it almost can't be inserted. The only consistent factor for each episode is it always attacks with a regular scheduled menstrual period. I asked Dr. Fleisher (I was diagnosed by him.) If having a hysterectomy or going through menopause might stop it; he said no. I've been hospitalized by a gastroenterologist MD and had my entire digestive tract checked out. (Even had my appendix taken out in 1st episode) and all tests said normal. I never have any headaches. Here are the things I've tried. None of these has worked!

1) Dilantin
2)Propulsid
3)Imitrex
4)Birth Control Pills
5)Elavil
6)Cyproheptadine
7)Bentyl
8)Metrondazol

I've also tried these natural remedies: None of these has worked!

1)Black Cohosh-Capsule Form
2)Don Quai-Capsule Form
3)Chaste Tree Berry-Capsule Form
4)Licorice Root Capsule Form
5)Green Powder
6)Ginger Root
7)Aloe Vera Juice
8)Colladal Silver

Also I did a one month herbal parasite cleanse-did not work!

The only thing that is working to stop 50% to 75% of the episodes before they start is Erythimicin, a cheap penicillin based antibiotic that Fleisher says is the only drug that helps me with a really tough case. Always 5 to 7 days before vomiting starts, my stomach will begin hurting (no nausea) slightly at first, but each day progressively worse, until the pain is waking me up at the PM. I must take ibuprofen at regular intervals and it really works and I think I have it beat but by the Day, I feel really strange, like hibernating, retreating from a task, and I'll get a body chill and this means vomiting will start within 24 hours. The nausea completely takes over my being- like being seasick during an ocean storm. I become so helpless that I can't carry on a conversation, or read, or watch TV. One drug that helps slow down the frequency of vomiting and helps me to sleep is Ativan in my IV. But I think it is ruining my long term-short term memory and leaves me feeling depressed after an episode.

So when Erythimicin doesn't ward it off, I have tried Zofran pills 48 hours before an episode, but they were still whole when the episode startred so the first day of vomiting during last episode, I hads one $250.00 drug put in my IV (thanks to my wonderful, understanding husband) and it worked! The vomiting stopped within 24 hours- I was able to eat, drink, and go back to work on the third day! It was like a miracle! Now I'm wonderingif Zofran can be given as a shot before the vomiting begins? I can tell when the vomiting is going to start within a few hours. I will be conferring with Dr. Fleisher about this. I would really like to know what is malfunctioning in the body or brain to cause this-I even applied for SSI Disability and was turned down because there is no medical test that shows you have CVS. No one in my family tree has any stomach problems. I have no allergies.

I've talked to a mother of a seven year old son living in Colorado who's had a severe case since infancy (she wrote a paragraph in a Code V Magazine) They've been to Mayo Clinic, had professional help for years, even had appendix and other organs out-and nothing helped til it was suggested to her that a totally pure diet-Macrobiotic would cure it. No sugar, no animal products, additives-only whole grains and cooked vegetables and seaweed condiments. And it has worked perfectly! No CVS for months until he ate some pizza one day-started an episode. Afterwards right back to the Macrobiotic diet- no sickness. Hopeful as it seems I can't seem to bring myself to go all the way with this. I've changed my diet half way, am knowledgeable about good nutrition but having to cook for a family of four who loves meat makes me not have time for it.Plus I am very dependent on coffee and tobacco-so I am sabotaging myself I guess.

I would like to get in contact with other adults (even one friend) who suffers this-to share stories and ideas. And I'd like to hear feedback from you, comments, new ideas, news, anything! Let me hear back something soon okay? Thanks a lot!

Melinda McGinnis, D.O.B. 11/17/59

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