Narcolepsy Support Group

I was diagnosed with Narcolepsy over 13 years ago in my early 20's. I have been on every drug there is to try and Provigil has been the drug of choice for the past 6 or more years. Following narcolepsy came cataplexy which brought on a new drug to add and then not being able to sleep at night brought on another drug. So now I take a drug to stay awake, a drug to control cataplexy and now the drug to put me in a deep sleep for 4 to 6 hours a night so I can wake up and take my Provigil. For the past 4 years I have noticed signs of memory loss. Not remembering which route I took to work, where I parked, names of my co-workers I have been friends with for years, what i ate, my next doctors appt, and even to pick up my kids from some place. So I would like to know if memory loss is a side effect of the long term use of provigil or could there be something else wrong?

I always considered the memory loss to be part of the narcolepsy. I struggle with this on a daily basis. I dropped out of college because I couldn't remember anything I learned. I couldn't concentrate and to this day, have to work at the memory issue. These problems came before Provigil, but they still continue while on Provigil.

There is no telling what all the side effects are for provigil. if i were you i would be on line or in a library researching it. i have done it but i cannot recall what i found out

Well, memory loss is definitely something that can be connected to narcolepsy alone, due to loss of deep sleep or having REM episodes while you would form memories. Anyone who is sleep deprived could have memory problems, so, just multiply that by however much to estimate our conditions with N. That said, it could also be linked to meds and, in my experience, specifically Provigil. That kept me upright, but I was like a zombie. I had magnified memory problems on that and gave it up. I've also read, though not experienced myself, that other drugs, like Xyrem, can have this happen for some people. When you take something like Ambien and don't take breaks from it (like they recommend), but take it night after night after night, it is almost a sure thing that problems like that and worse could crop up. Ambien taken like this could cause automatic behavior in 'normal' people, the kind of stuff we get for free. So, I guess, not being one myself, I'd check with your doctor and pharmacist about your specific mix of meds and just in general to see if memory issues for you could be due to something entirely different. I took Provigil for years before I realized it was causing some of what I was trying to fix! Sorry you are suffering and good luck. I really hope you find a good solution

Post edited by: dreamOrama, at: 12/02/2008 14:06

Any medication that states; "The precise mechanism(s) through which modafinil promotes wakefulness is unknown" is bound to have some crazy side effects. I have read many answers to this question on other forums and support groups and although I’m not even close to being a doctor, I believe that dreamOrama has the best answer so far. Long term memory is almost completely dependent on sleep. When the brain is not dreaming, it is busy processing, and organizing memories. If the brain is dreaming all night, then there is no time for memory organization.

I also had to drop out of college due to memory loss. When I managed to pay attention in class, I would remember the "what" but I would never remember the "how". I had a problem with associations especially when it came time to associate a name with a face. Personally, I think the memory loss has more to do with my particular flavor of narcolepsy then the provigil. Then again, I have never seen a memory loss post for any other medication besides Provigil. It is unlikely that any pharmaceutical company has ever done a memory related trial unless they are expecting the medication to affect memory. Memory is one of those things that’s just so damn hard to measure. Before visiting your doctor, I would recommend that you study your “Cognitive Faculties” for a week or so and try to collect as many details and examples about your memory as you can. Knowing HOW you memory is affected will be much more valuable to you doctor then knowing THAT your memory is affected.

I was diagnosed with Narcolepsy about 7 years ago. I am currently 18 and I too am noticing signs of memory loss. I have a strong feeling it is the Provigil that I have been taking for 6 years. I take 200mg every 4 hours. So I average about 600-800mg a day. A very high dosage.

Example: I was at school in Gym class and went to the bathroom, then I forgot where I was. I realized I was in Gym because I was wearing my Gym clothes. But then I forgot where the Gym was located. It was pretty scary. I must have wondered around the halls for a good 15 or so minutes until I figured out where the Gym was. I passed the nurses office during my search and I was so tempted to go in there and start crying because it was truly one of the scariest things that have happened to me.

That was an exception to my memory loss. Usually it is not nearly THAT bad. Usually I just cant remember direction or go in a room and I forget what I'm doing. Cant remember names, little things like that. But slowly its progressively getting worse. I'm only 18!!!! I shouldn't be losing my memory yet! It's a scary thought. But even if it was the Provigil that was the problem, I've been taking it for song long and I'm so completely dependent on it to keep me awake and alert, I'm scared what would happen if I switched medications.