Thoughts on Xyrem, narcolepsy, and improvments in life.
So this is short, somewhat random, but I thought a quick update was due. I have switched to a new medication and am very happy with it. I realized watching it again that I said it is dangerous in combination with alcohol, and then said it is not dangerous. I think the point is made though. If you have narcolepsy with or without cataplexy I recommend looking at their website. www.xyrem.com
Tags: Xyrem, Life, Thoughts, Narcolepsy, improvments
Related posts:
- Narcolepsy and Xyrem Diaries 3 - First Experience Taking Sleep Medication Xyrem
- Narcolepsy and Xyrem Diaries 1 - Just prescribed Xyrem for Narcolepsy and Starting a blog
- Narcolepsy Diaries 11 - Updates - xyrem and alcohol, waking up early and more
- Question for folks with narcolepsy: What is your experience with Xyrem for treatment of cataplexy and EDS?
- Narcolepsy Symptoms - How This Dangerous Sleep Disorder Can Wreck Your Life
What were the results of your lab?
Hi Callie i watched your videos. I am 99% sure i have narcolepsy and cataplexy. I have had in the area of 75 cataplexy attacks. i have not worked or driven for 4 months until all of my testing is done. i have a sleep study on jan 15th and should know for sure jan 25th. i just hope i get diagnosed soon and get back to a normal life. i am a 48 yr old female. thanks for your information i am sure you have helped alot of people and am glad you are feeling well. good luck
I ran out of space…….from LaToyia- 3 God Bless you and keep me posted. I’m LaToyia and shoot you my email in a message. I was also in school and I could literally never finish reading my assignments. It sucked. School is something to look forward to with a drug that produces results. What are you going to school for?
I ran out of space., from LaToyia- 2……It’s comforting that there others with this dibiitating disorder that are speaking out about the ineffectiveness of the constantly prescribed drugs and that are finding other options that actually produce strong results.
Thanks for the update. I am happy that you found something that actually works 100%! My husband wants me to look into the Xyrem as well. Right now, I’m breastfeeding and the doctor said there is nothing that I can take for the narcolepsy, but when I’m finished nursing, I want to get back on something else.
I wanted to clarify that you cannot develop a tolerance for Xyrem. The reason you have to adjust your dose right now is because when you started on 2.25 your body was exhausted from years of poor sleep. As your body gets used to better sleep you have to increase the dose to simply fight the narcolepsy. 3 grams twice a night is what I am on and is a medium dose, you can continue to increase your dose with your doctors orders up to 4.5 twice a night.
bye bye cataplexy
on Nuvigil, but I can’t afford that right now so my doc prescribed ritalin. It doesn’t really work… but then again you pay for what you get. I am very happy that Xyrem is working out for you! Take care!
You know what. I will stick to the one dose tonight and maybe call them in the morning to confirm with him that that’s what he wanted for me. I’d rather err on the side of caution and ask to start lower. The pharmacy didn’t say anything to me about it, though. I actually have another friend I used to work with who also has narcolepsy - as you mentioned here- she never heard of Xyrem, so you are right that it’s still new but hopefully it will get more popular.
I just don’t think it was a safe choice to start on the highest dose. The company website does not suggest it either. The gasping for air is a bad sign though-you did the proper testing and had no sign of sleep apnea, so I am guessing the dose is shutting down your system too much. I would call your doctor and tell him about that. When I started it was 2.25 grams twice a night. I guess you start off there because at first you are so tired it works really well, then you adjust for control.
I ran out of comment space above, so here’s part two. Feeling like a brand new person isn’t trite - it’s the truth with this. I was so super focused at work today for the first time in a long time, and my dark circles were lighter this morning. Physically and mentally, I felt a world of difference. I can’t imagine what it will be like when I really get adjusted on on both nightly doses. Wish me luck.
Thanks for the update. Great to find someone else who found this to be the answer, although I am also still supposed to take the Provigil until my next appt. in three months. As you commented on mine, my dose seems high. I didn’t question him but hearing that others start lower makes me wonder why he chose this route. Today is the first day I take both doses. Did you start with both right away? Last night was the first night I woke up gasping for air- hope that goes away. It was terrifying.