Patient Comments: Cyclic Vomiting Syndrome (CVS) - Treatment

Question:

Please share the treatment(s) you received for cyclic vomiting syndrome. Submit Your Comment

Comment from: Kady7, 7-12 Male (Caregiver) Published: April 23

My son is 12 and has been diagnosed with cyclic vomiting syndrome (CVS) since he was 4. He would be hospitalized every 7 weeks. We used all the empiric guidelines recommended for CVS but what finally helped was Abilify (aripiprazole). He also suffers from migraine headaches. Zofran is also helpful when he becomes nauseous but he has been able to stay out of the hospital for several years. He is starting to have symptoms again. Ugh.

Comment from: s cook, 65-74 Male (Patient) Published: February 25

The doctor prescribed amlodipine and desipramine for my cyclic vomiting syndrome (CVS), and I started on them 2-8-19. I had been on Aimovig for 4 months with so-so results. I then heard about the 2 above medicines by a person who swore that the 2 above medicines stopped her CVS. I am on all 3 now and no episodes in 7 months (CVS for 29 years).

Comment from: 123, 35-44 Female (Patient) Published: October 01

After 10 years of having related episodes, a gastrointestinal doctor figured out I had cyclic vomiting syndrome (CVS). He prescribed nortriptyline and it has prevented the episodes of CVS. I tried stopping the medicines but CVS comes right back. Some triggers are stress and fennel. The herb fennel because I thought I was getting food poisoning a lot so took a tincture with fennel which I then became allergic to.

Comment from: Onelove1993, 25-34 Female (Patient) Published: June 07

After a decade of not knowing what was wrong with me, the doctor finally discovered I had cyclic vomiting syndrome and prescribed me amitriptyline to take before bed. I cut back on my marijuana smoking although smoking some has helped with my sick tummy from time to time. I have way less episodes and I’m trying to live my life as normal as I can. My bipolar disorder and anxiety seem to be the biggest trigger out of everything I’ve noticed.

Comment from: Judeasfirst5, 7-12 Male (Caregiver) Published: May 01

Treatment once diagnosed with cyclic vomiting syndrome began with Zoltan as needed, every 6 hours; then added ranitidine and cyproheptadine twice daily. It was supplemented with omeprazole twice daily. Treatment needs re-evaluation because cycle has moved from every other week to daily morning.

Comment from: Mama, 75 or over Female (Patient) Published: October 28

I am an older lady. I have suffered with cyclic vomiting syndrome for at least 10 years. Each time I have a lot of vomiting and nausea. Unfortunately I have yet to find a treatment. I am open to any ideas for comfort and help.

Comment from: Jenn, 35-44 Female (Patient) Published: July 10

I have had cyclic vomiting syndrome CVS all my life. I am 40 now and don’t go a week without vomiting. One thing I have seen is I don’t make enough money to afford my Zofran every month. I have to choose between my seizure medicines and stomach medicines. So I end up in the hospital often. I wonder if anyone has any ideas of how to cope with it when homeless with this disease. I am currently crashing at friends’.

Comment from: Chris359, 55-64 Female (Patient) Published: January 25

After several years of false diagnoses, and unnecessary surgeries, I was diagnosed with cyclic vomiting syndrome (CVS) and was prescribed Ativan for my symptoms. My original dosage was 0.5 mg at bedtime. As I was still experiencing episodes, this dosage was increased to 0.5 mg three times per day. I am very concerned about the long term effect of this drug and so have decreased my dosage over the past two years as much as I could (this is very difficult to do!) against my doctor’s advice. I am now down to 0.125 mg three times a day. Hope to jettison it completely in 2018. I feel that the changes I have made to my diet (I follow the migraine headache diet and drink no alcohol) and working through my emotional issues has made a very positive difference in my health, so that Ativan is no longer necessary. Quite by accident I found that Lomotil taken during my prodromal phase (during which I experience several increasingly urgent and increasingly painful bowel movements) stops the train in its tracks, preventing the episode from moving on to vomiting. I have used this strategy successfully for a while now. I have not had a vomiting attack that required medical intervention since August 1, 2015.

Comment from: LLChic , 19-24 Female (Caregiver) Published: March 05

Quit using cannabis for the initial stomach pain which triggered the cyclic vomiting syndrome (CVS). It was a horrible never ending cycle because my daughter’s complete internal digestive system was diagnosed squeaky clean. The doctor in the country said it was anxiety and to continue with cannabis. Local emergency room said to quit cannabis as it was the trigger! Who to believe! She became so sick from CVS she became suicidal. We put her in a psychiatric ward for 3 days. Rehabilitation wouldn’t take her saying marijuana was not addictive. She mustered up the courage and quit. She is 100 percent recovered from CVS.

QUESTION

Bowel regularity means a bowel movement every day. See Answer