It’s been a crazy year so far

The last couple months have been pretty stressful. My wife was in the hospital most of January for an allergic reaction that caused her kidneys to not function properly as well as severe anemia, we still aren’t sure what is causing it, she has been recovering at home for the past 7 weeks. You can learn more on her blog: We also had to have our cat whom we’ve owned for 10 years put to sleep last Monday because he was very ill with cancer. I haven’t had the motivation to update my blog much, and am sorry for not posting more. I’m going to try to work on doing it more.

On the plus side, I had my monthly follow up with my neurologist today. I seem to be doing very well, narcolepsy wise, so I now don’t have to go back for 4 whole months. I have been doing monthly visits for almost 2 years now, it is awesome that I don’t have to be evaluated every month. About 2 weeks ago I stopped drinking caffeine completely. I found that it was counteracting with my Xyrem and made it harder for me to fall asleep, even if I didn’t drink any 3 or more hours before my first dose. Now my Xyrem usually knocks me out almost instantly, I was having several nights a week where I was having to take my second dose after 2 hours because I couldn’t fall asleep after the first, but it was all because I was drinking too much pop. It was difficult but I found that it greatly benefited me to stop drinking it.

I am now also taking the highest dosage of Xyrem, 4.5mg 2x a night. I have been on the max dose for about 2 months now, it seems to be helping but I have been so stressed out that it is hard to tell how well it is working. I’ve been having a lot of cataplexy due to stress and sadness (which are my triggers), hopefully once things go back to normal I will start noticing more benefits. I’m still taking 60mg of Vyvanse which seems to be working pretty well, although it starts wearing off by the evening most days. My narcolepsy seems to be pretty stable now, hopefully it gets a little better when I am not so stressed. I will keep you updated.


One thought on “It’s been a crazy year so far

  1. I am so excited to have come across your blog. My husband and I have been married for 10 years, and he has been living with narcolepsy for 15 years. I like to think we are veterans in the N life, because we’ve been coping, dealing, and managing our lives together -with narcolepsy, for 17 yrs. I welcome the opportunity to collaborate with other spouses about the journey and ways to keep positive.

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