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#1 DeathRabbit

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Posted 08 November 2012 - 04:10 PM

Does anyone know if N causes further brain damage to occur, due to the poor sleep? I was just wondering, like if someone flipped a switch tomorrow, and my N was cured, my hypothalmus completely fixed, would all my previous mental faculties return? Or would there be a lasting effect from the drastic neurochemical upheaval it's wreaked upon my brain. It seems like when I get a good day, a lot of my memory and concentration powers return. But not all. It feels like even on the days where I feel damn near perfect, that I'm still not firing on all cylinders upstairs.

#2 Hank

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Posted 08 November 2012 - 06:06 PM

Does anyone know if N causes further brain damage to occur, due to the poor sleep? I was just wondering, like if someone flipped a switch tomorrow, and my N was cured, my hypothalmus completely fixed, would all my previous mental faculties return? Or would there be a lasting effect from the drastic neurochemical upheaval it's wreaked upon my brain. It seems like when I get a good day, a lot of my memory and concentration powers return. But not all. It feels like even on the days where I feel damn near perfect, that I'm still not firing on all cylinders upstairs.


The amount of lost cells from Narcolepsy is small and limited to Orexin/Hypocretin. Any memory or concentration problems are related to sleep deprivation. I lived with Narcolepsy for essentially my entire life without an explanation. I have managed to function in a corporate job, raise 3 children with my wife and compete in endurance sports. I also have struggled through thr simplest things like e-mail, watching tv and anything else requiring me to sit quietly.

I do not consider myself as having brain damage, although that is technically accurate in a small sense. When I worked in an ER, I became familiar with the signs/symptoms of traumatic brain injury and stroke, which are generally considered to be brain damage. There are global congnitive and motor deficits from true brain damage.

Xyrem has considerably improved my EDS and almost eliminated Cataplexy, which has allowed me to concentrate and focus without the frequent "crashes" like before. If I had true brain damage, my deficits would not be so easily reversed.Thinking of myself as brain damaged because I have Narcolepsy just feels unnecessarily dramatic. It is what it is- I have a "rare disease" that nobody understands. So, I don't talk about it with many people- only a chosen few who I can trust. All I need to do is live and function well within the limits of my ability. Unfortunately, my ability fluctuates throughout the day. So I have to be flexible and creative to make it work, but this also makes it fun.

Bottom line for me, I have to find a way to live with Narcolepsy. It is an inseperable part of me, but it does not define me. What does define me is how I respond to it, because that is my choice. When I don't like how I am responding to my circumstances, I can change my response even when I have no control over the circumstance.

#3 DeathRabbit

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Posted 09 November 2012 - 03:26 PM

The amount of lost cells from Narcolepsy is small and limited to Orexin/Hypocretin. Any memory or concentration problems are related to sleep deprivation. I lived with Narcolepsy for essentially my entire life without an explanation. I have managed to function in a corporate job, raise 3 children with my wife and compete in endurance sports. I also have struggled through thr simplest things like e-mail, watching tv and anything else requiring me to sit quietly.

I do not consider myself as having brain damage, although that is technically accurate in a small sense. When I worked in an ER, I became familiar with the signs/symptoms of traumatic brain injury and stroke, which are generally considered to be brain damage. There are global congnitive and motor deficits from true brain damage.

Xyrem has considerably improved my EDS and almost eliminated Cataplexy, which has allowed me to concentrate and focus without the frequent "crashes" like before. If I had true brain damage, my deficits would not be so easily reversed.Thinking of myself as brain damaged because I have Narcolepsy just feels unnecessarily dramatic. It is what it is- I have a "rare disease" that nobody understands. So, I don't talk about it with many people- only a chosen few who I can trust. All I need to do is live and function well within the limits of my ability. Unfortunately, my ability fluctuates throughout the day. So I have to be flexible and creative to make it work, but this also makes it fun.

Bottom line for me, I have to find a way to live with Narcolepsy. It is an inseperable part of me, but it does not define me. What does define me is how I respond to it, because that is my choice. When I don't like how I am responding to my circumstances, I can change my response even when I have no control over the circumstance.

I'm hoping the Xyrem makes me smart again too. It's getting to the point where if all my family died or something, I'd just off myself cuz life in and of itself, no longer holds any joy.

#4 Hank

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Posted 09 November 2012 - 08:11 PM

I'm hoping the Xyrem makes me smart again too. It's getting to the point where if all my family died or something, I'd just off myself cuz life in and of itself, no longer holds any joy.



That is rough- I am so sorry you are dealing with that. I hope it lifts soon and you can enjoy your life more.

#5 exanimo

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Posted 10 November 2012 - 02:20 PM

I don't think that the loss of Orexin/hypocretin can be considered 'brain damage'. There is an article on the main page of this site that talks about cataplexy circuitry, and it references some of the testing they have done on mice. Basically they have managed to take away the orexin cells in mice, making them narcoleptic, and replace them, where they no longer show the symptoms of narcolepsy. So in answer to your question, if the orexin cells were replaced, you would be 'normal'. According to their current testing, that is. Mind you, I could not understand most of the technical garble that the article has, but that was what I gathered. I was also looking at a few other articles, so hopefully I'm not getting them mixed up. >.<

But the memory and concentration problems are definitely not from the loss of the orexin cells, rather its a consequence of the REM intrusion and our screwed up sleep cycle during the night. With medication and lifestyle changes I fully believe that you can improve the effects on memory and concentration.

I was joking with a friend just the other day that I have no idea how I've made it through life thus far. I'm a junior in college and I fall asleep on a regular basis in most of my classes. Somehow, I've managed to use common sense and logic to get me through. By nature, I'm a curious person and this has helped me a lot because I do a lot of outside of school learning. Google is my best friend and all these little tidbits that I've learned over the years have made it easier for me to connect concepts that I do learn in school.

My biggest tip that I can give you is to take your medication as prescribed, and keep track (perhaps mentally or in a journal) about the effects. Is it helping? Do you notice a difference? When I started Nuvigil I didn't think that I'd noticed a difference until I looked back and noticed that it's only once or twice a week that I come home and take a nap. Most days I'm now able to go all day until about 7 pm without 'having' to sleep. That is a definite improvement from before when I would need a nap every day and was also falling asleep much more often in classes or during inactivity.

Also, be sure to normalize your sleep schedule as much as possible. It's no fun to have a set bedtime, but it will help! It's also no fun to wake up at 8 am on the weekends, but again, it's worth it in the long run. Your body will become more used to your sleep schedule and your circadian rhythm will be much better for it. If you do take naps, also try to schedule them to, if possible.

Narcolepsy is a condition and one that we have no choice in. But it does not define us. Even if you're having trouble with memory or concentration, you can still succeed. Try picking up a hobby that doesn't require so much on the memory or concentration side. Like a sport, because they also promote wakefulness. But whatever you do, find happiness in what you are doing. Because while Narcolepsy makes it difficult, it does not make it impossible.

Hopefully your medications are improving your quality of life, but if they aren't, don't forget to talk to your doctor. I'm lucky enough to have a wonderful doctor and anytime I feel that my medications aren't doing what they're supposed to, I make an appointment and we adjust them if need be.

Good luck :)

#6 Megssosleepy

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Posted 15 November 2012 - 12:25 PM

I don't think that the loss of Orexin/hypocretin can be considered 'brain damage'. There is an article on the main page of this site that talks about cataplexy circuitry, and it references some of the testing they have done on mice. Basically they have managed to take away the orexin cells in mice, making them narcoleptic, and replace them, where they no longer show the symptoms of narcolepsy. So in answer to your question, if the orexin cells were replaced, you would be 'normal'. According to their current testing, that is. Mind you, I could not understand most of the technical garble that the article has, but that was what I gathered. I was also looking at a few other articles, so hopefully I'm not getting them mixed up.


Okay so they give mice Brain Damage and then replace what they took away... are they able to do this with Humans... give us back the lost cells?

#7 Megssosleepy

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Posted 15 November 2012 - 12:33 PM

I'm hoping the Xyrem makes me smart again too. It's getting to the point where if all my family died or something, I'd just off myself cuz life in and of itself, no longer holds any joy.


How long have you been on Xyrem? I think I remember you saying that you werent taking it... did you decide to start? The reason I ask is, I was an utter mess before I was on Xyrem... I have more then 1 post on here saying something similar to what you wrote above... I have found, and I hope you will too, that my depression is 100% gone... it seems that my brain just needed to stop thinking for once, now my thoughts are clear and I can handle life small hurdles. I still have the same amount of EDS, some days worse then others... but my brain fog has eased up, I am making less mistakes at work, and I am absorbing more when I study.

I truly believe that if you stick with Xyrem parts of your life will improve. It might not be in the same way it has helped me, but your overworked brain needs some downtime! :excl: :excl: :excl:

#8 DeathRabbit

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Posted 27 November 2012 - 11:04 AM

How long have you been on Xyrem? I think I remember you saying that you werent taking it... did you decide to start? The reason I ask is, I was an utter mess before I was on Xyrem... I have more then 1 post on here saying something similar to what you wrote above... I have found, and I hope you will too, that my depression is 100% gone... it seems that my brain just needed to stop thinking for once, now my thoughts are clear and I can handle life small hurdles. I still have the same amount of EDS, some days worse then others... but my brain fog has eased up, I am making less mistakes at work, and I am absorbing more when I study.

I truly believe that if you stick with Xyrem parts of your life will improve. It might not be in the same way it has helped me, but your overworked brain needs some downtime! :excl: :excl: :excl:


I'm on the schedule to get Xyrem, but at the rate SDS and my insurance are doing things, it'll be sometime next universe before I see vial one. >.<