- Cyclic vomiting syndrome
- Interviews
Nicci's interview
How did all start?
I have had it since I was a small child.
Do you already have a diagnosis? How long did it take you to get it?
Yes. I was not properly diagnosed until my 30s.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologist, gastroenterologist, hematologist, psychiatrist. Neurology has been the most helpful.
What has been the most useful thing for you so far?
Mitochondrial supplements, aimovig, Ativan for aborting episodes along with sumatriptan and phenegran for vomiting.
What have been your biggest difficulties?
The randomness and long length of some episodes. Missed work during episodes, extreme fatigue and pain.
How has your social and family environment reacted? Have your social or family relationships changed?
Socially and in relationships it can be hard at times with canceling plans or missed events. It also difficult at times to keep up with children and their activities during episodes, having a strong family and friend network that is understanding is invaluable.
What things have you stopped doing?
Eating certain foods, making plans too far in advance, putting myself in stressful situations that’s can be avoided.
What do you think about the future?
I think there is a lot of hope and new innovations coming for this condition.
So far, which years have been the best years in your life? What have you done during them?
My best years are hard to say. I have had many great experiences. CVS doesn’t define me it just changes some things along the way.
What would you like to do if you didn’t have your condition?
I would like to be able to enjoy foods that I am unable to, make plans and know i can keep them.
If you had to describe your life in a sentence, what would it be?
Blessed in many ways but a struggle in others. CVS is just a struggle that accompanies many great blessings.
Finally, what advice would you give to a person in a similar situation?
Don’t give up hope. Find a good doctor. Do your research. Avoid triggers once you know you have them when possible.
