Anyone with Narcolepsy Losing Memory?

Memory problems are common with Narcolepsy. Especially if you have trouble falling or staying asleep. Your brain files your memories in sleep. The more problems you have sleeping the more memory issues you may have. If you are excessively sleepy during the day it's what a lot of us refer to as sleep drunk. Problems forming memories, coordination, unsteady, may walk into things much like being drunk from alcohol, hence feeling sleep drunk. And it does impair cognitive functioning so we should not attempt to drive or handle dangerous machinery when feeling sleep drunk.

It wasn't anything like that. I never felt sleep drunk during the day (I got up to go to the bathroom one night and my Xyrem made me feel that way), and the memory problem was 24/7. I have been fighting the disorder for over 2 years now, and my sleep problem at night is way better than it used to be. The memory I lost never got filed for the long term. It was working memory I was using to accomplished things during the day. It's a strange problem. The Neurologist had given me some tests, and she was really surprised when I got my memory back.

Are you still on Xyrem? I found it to be bad news. I had memory problems, confusion, depression, more cataplexy with injury at night than I ever had. I was on it 5 years, my brain hasn't been the same since. Even my Dr later referred to it as poison. I take Quetiapine now for sleep, it works very well. I've had narcolepsy for 37 years now. Things have gone downhill since Xyrem and I am convinced it has a lot to do with it. I just can't seem to get my brain to function the way it did pre-Xyrem.

Now your talking. It sounds very plausible to me. I need to find some evidence somewhere. Something better than our anecdotes.

Poison for the small price of $160,000 a year. A drug that was formulated over a century ago.

One more thing. How is your excessive daytime sleeping doing?

It's a constant battle. I've been dealing with it and on the medications for about 37 years. At this point the older cheaper medications don't work well after being on them for so long. They want $4100 a month copay for newer meds, 3 times my income. So that's out. The medication that does work pretty well I can't get at near adequate dosage. My life has come almost to a complete stop, sleeping most of the time. Every now and then I say screw it and take what I have to so I can get something done or go do something like go to the beach or see my kids. Drs would see it as abusing meds, I see it as making the choice to do what it takes to have a day of actually living. The reason the dosage is so low isn;t because my Dr thinks it should be, it's because of over regulating and bullying Dr's out of prescribing adequate medications if they're controlled. I take hydrocodone for excessive fatigue and cataplexy. It works in the brain to reverse both very well without the terrible side effects. Latest research shows how and why they work.

The best thing you can do is be your own advocate. Learn everything you can about your condition. Keep up with the latest research and know what treatment options are out there, even those out of the box. Don't be afraid to tell your Dr what you think maybe the best treatment and ask to try starting with the lowest dose. Print out what you've been researching and take it to your Dr appts. Don't depend on them keeping up with what research is looking at. If the Dr doesn't want to listen and acts like they know it all, find a new one. One that listens, works with you, is open minded and seriously considers your input after you've shown you have done your own research.

That's exactly what I'm doing. I have advanced education in Philosophy of Science, so I'm always right on it. I've been on hydrocodone for years for a neck injury, but never thought to look at it that way. I'm a type 2, so no cataplexy thankfully. We're kind of poor too, so I get that one. I have done the "screw it" too. My wife was diagnosed with breast cancer, and I'm not going to miss her appointments and chemo while sleeping.

Thank you so much for your input. You got down to the nitty gritty, and it means a whole lot.

I'm so sorry. People shouldn't have to miss out on important times in life when they don't have too. It's really terrible what's going on right now and how things have gone from one extreme to the other. The night my mom died, I sat in the ER with her. We were talking, she was making jokes, laughing so it didn't occur to me it would be her last night on earth. She was being admitted and wanted some things from home. My meds were wearing off so I headed home instead of taking another dose. I would've stayed until she was settled in her room if it wasn't for that. She died a few minutes after I left, alone because I wouldn't take an extra dose. It about destroyed me. Now if I want to do something or drive 240 miles to see me kids I take the dosage that works. I've been on them 30 years, I'm prescribed 7.5 mgs hydrocodone 3x a day, still. My Dr is so worried he'll get in hot water if he increases my meds any more, he's not wrong to worry. It takes 10 mgs to stay semi functioning and 15 to be fully awake and functioning to be able to drive safely.. Really, it's not a lot considering it's been 30 yrs. I skip doses and days, I save todays to live tomorrow. I'm doing what I need to do to have some days with the energy to live some life. I am choosing to do what it takes to be able to do that. I do not consider doing what I have too to spend time with my kids or a day out actually living to be abusing medication. My Dr agrees my medication isn't near adequate and gets upset himself over the current situation, he feels terrible and been nearly in tears over how much my life has declined because of it.

Man that's tough. I'm 63 and have only been only doing this for 2 1/2 years. I need to stop complaining.

People don't realize how bad this condition is.