Scared to try Xyrem
I’ve just been prescribed Xyrem to manage my cataplexy and plan to start it this weekend. I’m scared in case it makes me sick and I can’t work. I can’t afford time off and there’s already a risk of losing my job. The consultant wants to start on 1g and increase every two weeks but that seems way too low from everything I have read.
I tried Xyrem and Xywave and could not tolerate either. Xyrem gave me the worst migraines and I was unable to work. With Xywave, I was unable to get ut of bed and needed help to get to the bathroom. They are the most horrific drugs out there and I wouldn't recommend anyone trying them!
What do you think patients did before this medicine. have been successful in taking small controlled amphetamine does for 60 years. iwill soon be 80 and I take 20 mg. Is not perfect but I know what to expect and I have about 8 hrs of normal or my normal a day and I get sleep and get a lot accomplished.However,this is my bodies response,may not work for you.This is not a one stop shop.You will never get support from work and it could work against you.This is not a disease easily understood or supported,it is mostly is looked at as an excuse. I was an asst administrator for a large hospital and knew better than to release information that could be used against me by jealous employees,if desired. See a psy dr first so you will have back up support for your needs and it will be legal,should you need it. Trust no one.
Welcome to the community,
. I'm glad you found a treatment strategy that works for you. My grandmother had narcolepsy, but there was no real treatment then. Thankfully, hers was mild until her 60s. At that point, she had to give up driving, but she wasn't working. That helped.
The decision to tell employers about a narcolepsy diagnosis seems to be very indivual and personal. Many people share your fears and don't disclose it, but others can't do that because they don't have enough control over symptoms to get through the day without accomodations.
I hope that recent efforts to raise awareness make a difference, but that's hard to say. Thanks for joining the conversation and sharing your experience. Warmly, Lori (Team Member)
Hi
. It can be scary to start a new medication, especially one with a long list of potential side effects, but keep in mind that the FDA requires that drug manufacturers list every reported side effect even if only a handful of people reported them and even when there is a possiblity it's not related at all. You might experience some side effects, but you might experience none at all.
I have never taken Xyrem, but here are articles from two people who have taken it: https://narcolepsy.sleep-disorders.net/living/xyrem-side-effects and https://narcolepsy.sleep-disorders.net/living/xyrem-expectations. I thought the articles might provide you with some insight.
Is your employer aware that you have narcolepsy with cataplexy? If so, or if you are comfortable disclosing it, maybe you can discuss your concerns about starting the new medication with your employer and ask for some leniency as you adjust to it. You have protections under the Americans with Disabilities Act, but those protections only apply if your employer is aware of the condition.
Here is a dosing chart for Xyrem: https://www.drugs.com/dosage/xyrem.html. It does seem that your doctor is starting you off on an amount that is lower than the recommended dose, but it's possible your doctor has seen better results and few side effects with a gradual introduction of Xyrem. Can you message your doctor to find out why you were prescribed 1 g to start?
I hope others chime in with their own experiences and that Xyrem proves effective for you. Please keep us posted. I'll be thinking of you. - Lori (Team Member)thank you. My employer is not a safe place to share things right now so I haven’t told them. I don’t think there would be any support or understanding sadly. I’m going to just try it and see. If I don’t feel good, I’ll just stop and go back to what I was on previously I guess. I wish you had more support at work. That can't be easy. - Lori (Team Member)
