What is that?

Many people who think they have CVS actually have CHS. There are ways to tell them apart, a good neuro can help. Also, people who start experiencing symptoms as children usually don’t have CHS, lol.

For me it started a year ago every month when I get my period. I am on a new medicine called qulipta, so hopefully it works and it won’t happen again.

I have CVS and use marijuana as a way to manage pain. When I go to ER’s for episodes that cannot be controlled at home they always tell me that I have CHS. This is NOT true. While having CVS and suffering from CHS at the same time is possible, it’s rarely the case. I have told doctors at ER’s that I have CVS and they’ll try and tell me it’s a symptom not a disease. If they do this, it’s probably because they’ve never heard of CVS or believe that it’s real. If a doctor at an ER tried to re-diagnose your CVS ask for a new doctor or a patient advocate.

Everytime I go to the hospital for cvs episodes they think I’m seeking drugs it’s so awful 😭

What is prodromal care?

I can’t even talk when I have an episode

It’s the first phase of the four phases of CVS, the final being the recovery phase. I refer to it as “the calm before the storm”, nausea and severe migraines are common indicators for me that I’m about to have an episode. The prodromal phase is your only chance to stop an episode before it starts. It’s not a cure all but it can reduce your number of ER visits per year. If your doctor hasn’t prescribed you an anti-nausea medication ask them about getting one, I use Zofran (Ondansetron) but ask your doctor what’s right for you. Keep a journal of all your symptoms any time you realize an episode is coming, with time you’ll be able to recognize your bodies prodromal phase. If you have had Zofran pills prescribed and they don’t work ask for the ODT (dissolvable) tablets. They get into your system much faster than a pill. The pills never work for me but the ODT does.