Sadly it's pretty much a given that narcolepsy itself causes memory and cognitive problems, for more than one reason. You've had narcolepsy at least 3 decades, I'm guessing. Perhaps the symtoms have become much worse over the years. Regardless, from the time your brain destroyed its hypocretin, you have started down the road of sleep deprivation. Memory and cognitive problems are part of the package of long term sleep deprivation.

Heck, even normal people who have something going on in their lives and for whatever reason have several nights of little sleep and are feeling very sleep deprived will say that they can't think straight, and forget things. Only for them, they will once again be able to sleep and get a good night's sleep, and get the appropriate consolidated restorative sleep and feel back to normal (whatever that is).

In many respects Xyrem is almost a wonder drug for so many narcoleptics. At the same time, it is a highly controlled substance for a reason. Over the years I have heard from many narcoleptics whose brains have been affected in all kinds of ways, and oftentimes the side effects are negative enough for them to stop the Xyrem. But again, for many it has turned their lives around.

So, is it the Xyrem? Did Xyrem play a part in the front left part of your brain? Well, I wouldn't ask the Xyrem folks. Have you asked your doctor if there is a connection? If he doesn't know, consider contacting the researchers at Stanford University. If you want to go that route, I can give you a name and email address for the research coordinator and she is really on top of all things narcoleptic (and is narcoleptic herself).

You say that this is all so fast. Do you mean your problems with memory and/or cognition? I know that I felt that my own memory/cognition problems had gotten really bad just a couple of years ago. But in cleaning out my files, I came upon some reports from ten years ago where it was documented that I was experience a high level of memory/cognition problems (as reported by me to the doctors). It really surprised me. I had no idea it had been going on so long.

And yes, it's bad for me. So many things I have absolutely no recollection of. I oftentimes will ask one of my kids, "Did I used to know that?" Long term, short term, you name it. But it's inconsistent, so I never know.

Have you been on amphetamines at all for your narcolepsy. I saw nothing in your profile. I ask only because my sleep specialist told me that aside from the problems from little restorative sleep, long term use of the amphetamines that we take does damage over the years.

I have a narcoleptic friend, a retired Major (? I think that was her rank at retirement) in the Air Force and she is in her late 40's now. A few years back she was so concerned about her memory and cognition problems that she went through a neuropsych evaluation. She was shocked to discover her IQ had dropped 20 points. Now, our IQ can vary with each test we take, but maybe 5-10 points depending on the testing, how we're feeling at the time of the test, etc. But a 20 point drop is significant.

Much of what we are going through and will continue to live with is not apt to change, and can very well get worse. Somehow we each have to reach a level of acceptance if we are going to be the best we can be, given our circumstances at any given time. If not, we are going to be miserable and that can only affect us and those around us negatively.

Good luck to you. Let me know if you want that name and email addy.

thank you arizonahugs, I will contact stanford if the lower dose of xyrem does not improve my memory.

It is about 3 wks on the lower dose of xyrem and my memory seems to be back and on track.