Lizzie, you poor thing! At least they are getting a handle on it, and aren't tellin you it's all in your head. The woman I told you about was just someone I met one time, so I don't know how she is doing. But I do remember her saying that she had coped with the disease for years, and had trained herself to avoid her triggers, and so could basically lead a normal life. In her case, it didn't make her sleepy all the time, just when it was triggered.
Keep us updated on how it goes for you.
Hugs,