8 replies to this topic

[austeenob]

I have felt realyl sad about narcolepsy for a while, but am starting to get a whole another level of sadness, i feel like I have no future anymore, and everything that i had going for me , sports hobbies, music hobbies, education, traveling, meeting people, doing things, having a family.. just living a full-filled life as a normal person can't happen for me anymore... I only just turned 20, and have had N since my mid 17's. But it was easy back then, at this point i always feel like crap. I hope i get a turn around with xyrem. I've been taking it for like 2 1/2 months now but not consistently. 4.0 seems to be right. but still isn't enough. And when i try 4.5, I feel groggy the second I wake up. Just about every single friend went off to a 4 year college and we are no longer close anymore. And I don't play like i used to play volleyball anymore, and don't have the energy for it so the volleyball crowd I used to go to open gyms with and hang out with; i don't belong to anymore. And I was fine with all of that, because I've always have had the intentions of getting a job (which is hard to get with correct hours). But also traveling the world, and meeting people through out. I think that is truly one of the best experiences, making friends with different people all around the world. I eventually want to stay a summer in stockholm, sweden. But as for now, I moved down to fort lauderdale, for music & beach volleyball. Beach volleyball just isn't doable anymore as it used to be. And am in a 6 months lease. when I've only been here just about a month now.. Me and my dad are trying to see if we can get me back to virginia, and out of the lease; by getting my sleep doctor to write a letter stating my condition of narcolepsy is too tough for me. (even though technically i could try, and try to get a job here) I just would't be happy at all. I'm not happy at home to begin with. But I rather sleep on a real bed instead of a cott, and just be with my dad for a little while untill I make enough to move out again except this time move to Massachusetts, with my brother and work at a warehouse he works at up there for awhile and make good money, and eventually move out on my own some where. And then meet some people eventually, but mainly learn some languages, which im good at. And start traveling with good money I get from working up there. And meeting people & girls from other countries. I still am an athletic young guy. Its just the crappy feeling that I get WAY, WAY easier then others destroys me inside. But saying all of this.. I hope my xyrem experience gets so, so , so much better to where I feel really really well. And I can do the work, & traveling & get back into the Djing that i've been doing in the years past. But primarily, I haven't had a girlfriend since i was about 15, and it was short and not serious. Sometime I feel like, it will be so tough to have a relationship with all the stuff I deal with, but like i said, I hope it gets better, because I will have my eye on many good looking girls .

The last thing i'm going to add (this is all out of order, sorry) is my dad is the only one who has been there for me since I got diagnosed. And I've told him EVERYTHING, and always talk to him about it, and still he probably only know about 80-85% of it, because you can't understand untill you experience it for yourself. But my moms thinks its simple, and knows 0% and just doesnt understand (parents are divorced). All my family either doesnt know, or just dont get it, and the small, small less then a handfull of friends i have left don't know, and don't understand or care. Also the sleep doctor makes it sound easy.... makes me mad.

But anyways I could go on. I KNOW I'm a bad typist, and everything is mispelled and out of order, but i'm sure you can understand it. I just to type this out, and kind of describe my situation. what I want to do. And what i'm doing right now.. Currently hoping there is a way to get out of this 6 month lease.. so I can go home for a while and then go off again.. But there will be a big fee to pay. 850 a month...

But I am hoping to get a good job, living with my brother for a while, saving up money, continueing my xyrem routine, hoping for better results, eventually moving out and doing my own thing, with the good money i make, travel, travel, travel. And hopefully, my symptoms are really really vague and I feel great again so I can get a wonderful girlfriend and go clubing and adventuring again, and live a good life. But as for now.. dealing with the lease I'm under, hopefully getting out of it... and gonna continue with the xyrem.

Going to keep my head up & keep fighting, no matter how hard it gets, and its been hard for awhile now, but I'm young and have a lot to look forward to do, so going to go forward 100%.. gotta be strong

But hopefully we all eventually get a scientific break through cure for narcolepsy.

Thanks for everyone who read this, and took the time, a true thank you for me.

Anything you can answer and help, suggest, advice, reccomened, etc me about would be excellent!!

Thanks again, I can't thank you all enough.

You can email me at *** Austeenob@aol.com ***

Thanks

[sk8aplexy]

Hey, not sure I really have any good advice to give here.
I can say that, at this point in time for myself, being 32 and up till being 29 having had no idea 'what' was behind my matters although knowing very well I was absolutely not able to function normal-like...
As an infant I was born with Severe Persistent Hyperinsulinemia Hypoglycemia (or Congential Hyperinsulinism) which required 9/10 of my pancreas to be removed; I believe that likely ties into the Narcolepsy with Cataplexy as our bodies are a system, to say that such is just, or only, a 'sleep disorder' is quite insulting...
At 29, the idea of Narcolepsy seemed absurd but the Cataplexy I was experiencing (collapsing from laughter and sillyness, sometimes frustration and also over-exertion in fun sport activity) was 'clear-cut' and nothing (no other label) fit.
It took years of reading, over 5 sleep studies (I have a Central Apnea issue which opened a bag of problems, as my ENT matters caused serious problems in that ordeal), going to a handful of doctors around the midwest (good luck and you're doing the right thing being on forums reading for yourself) and finally now having a solid grasp and solid understanding (for the most part) of at least how I'm effected, and in some respects why (that has mainly been my own piecing together as it is what I've had to do)...

With all of that said, I always knew I had an underlying matter which could re-appear in some form.
So, on to what I would consider the advice I may be able to give:

Don't over-eat. Eat well balanced and foods which are not processed; I've developed allergies to almost everything over the past 10-15 years, unless they just had not appeared, but Gluten-free and Dairy-free has tremendously helped me, although the expense and difficulty when I am not cooking my own food is much.
If possible, learn to cook for yourself.
Basically, attempt to not gain too much weight and avoid neurotoxic foods (many of the most basic ingredients used today in practically everything processed, are definitely such).
Exercise as best you can, maybe not as much as you can, but regularly; try maintaining what level/s you currently have, and advance them if possible too.
Be very careful in becoming overly stressed at all, learn how to minimize your stress on your own, find ways to do that safely without creating conflicts or harms onto yourself.
Balance is crucial and very hard to find, more so to maintain...
Try to not fear, especially what is within you; that is to say if you have Cataplexy (this is from my own personal experience with it and may not be interpretable to you, or others?) do not fear it, adjust to it and learn how you best can manage it, or with it.
That is to say, that fearing it (which results in fighting it) can make it way way worse; for me at least that is a very essential element to it.

Best of luck, to you and all.

[tdmom]

Hi,
How is the Xyrem working for you? I had sent you a reply here and to your email address in response to an earlier post on Xyrem. I hope iit is working better and with time you may get even better. SHould you move to Massachusetts be sure to look for the posts about support groups, there is a good one in Boston with young people, actually people of all ages. Also some great Drs in the area.

I have felt realyl sad about narcolepsy for a while, but am starting to get a whole another level of sadness, i feel like I have no future anymore, and everything that i had going for me , sports hobbies, music hobbies, education, traveling, meeting people, doing things, having a family.. just living a full-filled life as a normal person can't happen for me anymore... I only just turned 20, and have had N since my mid 17's. But it was easy back then, at this point i always feel like crap. I hope i get a turn around with xyrem. I've been taking it for like 2 1/2 months now but not consistently. 4.0 seems to be right. but still isn't enough. And when i try 4.5, I feel groggy the second I wake up. Just about every single friend went off to a 4 year college and we are no longer close anymore. And I don't play like i used to play volleyball anymore, and don't have the energy for it so the volleyball crowd I used to go to open gyms with and hang out with; i don't belong to anymore. And I was fine with all of that, because I've always have had the intentions of getting a job (which is hard to get with correct hours). But also traveling the world, and meeting people through out. I think that is truly one of the best experiences, making friends with different people all around the world. I eventually want to stay a summer in stockholm, sweden. But as for now, I moved down to fort lauderdale, for music & beach volleyball. Beach volleyball just isn't doable anymore as it used to be. And am in a 6 months lease. when I've only been here just about a month now.. Me and my dad are trying to see if we can get me back to virginia, and out of the lease; by getting my sleep doctor to write a letter stating my condition of narcolepsy is too tough for me. (even though technically i could try, and try to get a job here) I just would't be happy at all. I'm not happy at home to begin with. But I rather sleep on a real bed instead of a cott, and just be with my dad for a little while untill I make enough to move out again except this time move to Massachusetts, with my brother and work at a warehouse he works at up there for awhile and make good money, and eventually move out on my own some where. And then meet some people eventually, but mainly learn some languages, which im good at. And start traveling with good money I get from working up there. And meeting people & girls from other countries. I still am an athletic young guy. Its just the crappy feeling that I get WAY, WAY easier then others destroys me inside. But saying all of this.. I hope my xyrem experience gets so, so , so much better to where I feel really really well. And I can do the work, & traveling & get back into the Djing that i've been doing in the years past. But primarily, I haven't had a girlfriend since i was about 15, and it was short and not serious. Sometime I feel like, it will be so tough to have a relationship with all the stuff I deal with, but like i said, I hope it gets better, because I will have my eye on many good looking girls .

The last thing i'm going to add (this is all out of order, sorry) is my dad is the only one who has been there for me since I got diagnosed. And I've told him EVERYTHING, and always talk to him about it, and still he probably only know about 80-85% of it, because you can't understand untill you experience it for yourself. But my moms thinks its simple, and knows 0% and just doesnt understand (parents are divorced). All my family either doesnt know, or just dont get it, and the small, small less then a handfull of friends i have left don't know, and don't understand or care. Also the sleep doctor makes it sound easy.... makes me mad.

But anyways I could go on. I KNOW I'm a bad typist, and everything is mispelled and out of order, but i'm sure you can understand it. I just to type this out, and kind of describe my situation. what I want to do. And what i'm doing right now.. Currently hoping there is a way to get out of this 6 month lease.. so I can go home for a while and then go off again.. But there will be a big fee to pay. 850 a month...

But I am hoping to get a good job, living with my brother for a while, saving up money, continueing my xyrem routine, hoping for better results, eventually moving out and doing my own thing, with the good money i make, travel, travel, travel. And hopefully, my symptoms are really really vague and I feel great again so I can get a wonderful girlfriend and go clubing and adventuring again, and live a good life. But as for now.. dealing with the lease I'm under, hopefully getting out of it... and gonna continue with the xyrem.

Going to keep my head up & keep fighting, no matter how hard it gets, and its been hard for awhile now, but I'm young and have a lot to look forward to do, so going to go forward 100%.. gotta be strong

But hopefully we all eventually get a scientific break through cure for narcolepsy.

Thanks for everyone who read this, and took the time, a true thank you for me.

Anything you can answer and help, suggest, advice, reccomened, etc me about would be excellent!!

Thanks again, I can't thank you all enough.

You can email me at *** Austeenob@aol.com ***

Thanks

[austeenob]

Hey, not sure I really have any good advice to give here.
I can say that, at this point in time for myself, being 32 and up till being 29 having had no idea 'what' was behind my matters although knowing very well I was absolutely not able to function normal-like...
As an infant I was born with Severe Persistent Hyperinsulinemia Hypoglycemia (or Congential Hyperinsulinism) which required 9/10 of my pancreas to be removed; I believe that likely ties into the Narcolepsy with Cataplexy as our bodies are a system, to say that such is just, or only, a 'sleep disorder' is quite insulting...
At 29, the idea of Narcolepsy seemed absurd but the Cataplexy I was experiencing (collapsing from laughter and sillyness, sometimes frustration and also over-exertion in fun sport activity) was 'clear-cut' and nothing (no other label) fit.
It took years of reading, over 5 sleep studies (I have a Central Apnea issue which opened a bag of problems, as my ENT matters caused serious problems in that ordeal), going to a handful of doctors around the midwest (good luck and you're doing the right thing being on forums reading for yourself) and finally now having a solid grasp and solid understanding (for the most part) of at least how I'm effected, and in some respects why (that has mainly been my own piecing together as it is what I've had to do)...

With all of that said, I always knew I had an underlying matter which could re-appear in some form.
So, on to what I would consider the advice I may be able to give:

Don't over-eat. Eat well balanced and foods which are not processed; I've developed allergies to almost everything over the past 10-15 years, unless they just had not appeared, but Gluten-free and Dairy-free has tremendously helped me, although the expense and difficulty when I am not cooking my own food is much.
If possible, learn to cook for yourself.
Basically, attempt to not gain too much weight and avoid neurotoxic foods (many of the most basic ingredients used today in practically everything processed, are definitely such).
Exercise as best you can, maybe not as much as you can, but regularly; try maintaining what level/s you currently have, and advance them if possible too.
Be very careful in becoming overly stressed at all, learn how to minimize your stress on your own, find ways to do that safely without creating conflicts or harms onto yourself.
Balance is crucial and very hard to find, more so to maintain...
Try to not fear, especially what is within you; that is to say if you have Cataplexy (this is from my own personal experience with it and may not be interpretable to you, or others?) do not fear it, adjust to it and learn how you best can manage it, or with it.
That is to say, that fearing it (which results in fighting it) can make it way way worse; for me at least that is a very essential element to it.

Best of luck, to you and all.

Thanks for the tips, i need to eat a better diet defiantly.And exercise regulary. Thanks again

[austeenob]

Hi,
How is the Xyrem working for you? I had sent you a reply here and to your email address in response to an earlier post on Xyrem. I hope iit is working better and with time you may get even better. SHould you move to Massachusetts be sure to look for the posts about support groups, there is a good one in Boston with young people, actually people of all ages. Also some great Drs in the area.

THANKS!! and it has gotten a bit better. doses change and become less effect/more effect all the time. 3.75 dose x 2 used to get me amazing sleep then it stopped working, then i went to 4.5 and got good sleep. then eventually i felt hungover the next day so i went to 4.0 x 2 and went to bed a 11:30, woke up at 3:30, went back to sleep and then woke up at like 7:30. Now it's 11:30 - 2:25 - 6:15. So, nothing stays consistent. But I'm sticking with 4.0 for a while. I used to work a labor job so i would come home exhausted, so that might be why i slept better. But gonna keep figuring it out and find out what improves everything. I am lucky that I have only a mild case. cataplexy is 99.8% gone, so very rarely, just a small buzz with xyrem. but hopefully the tiredness and fatigue gets a lot better and hopefully I can try and do more things again. Is it possible if it gets controlled a lot better that I will be able to go to shows that end at like 1 or 2? and then when I get home take xyrem? my other question, is I don't know your take on drinking, but I haven't drinking anything since way before i was diagnosed. But would 1, 2 MAYBE 3 beers be okay if i'm other with friends at like a club, say till like 1 or 2? And one thing I havent thought about yet, but is the smartest thing to do, to when you wake up in the morning, take nuvigil to keep me up the whole day with my 3oclock nap, and THEN I will get proper sleep that evening?

[sleepywriter]

THANKS!! and it has gotten a bit better. doses change and become less effect/more effect all the time. 3.75 dose x 2 used to get me amazing sleep then it stopped working, then i went to 4.5 and got good sleep. then eventually i felt hungover the next day so i went to 4.0 x 2 and went to bed a 11:30, woke up at 3:30, went back to sleep and then woke up at like 7:30. Now it's 11:30 - 2:25 - 6:15. So, nothing stays consistent. But I'm sticking with 4.0 for a while. I used to work a labor job so i would come home exhausted, so that might be why i slept better. But gonna keep figuring it out and find out what improves everything. I am lucky that I have only a mild case. cataplexy is 99.8% gone, so very rarely, just a small buzz with xyrem. but hopefully the tiredness and fatigue gets a lot better and hopefully I can try and do more things again. Is it possible if it gets controlled a lot better that I will be able to go to shows that end at like 1 or 2? and then when I get home take xyrem? my other question, is I don't know your take on drinking, but I haven't drinking anything since way before i was diagnosed. But would 1, 2 MAYBE 3 beers be okay if i'm other with friends at like a club, say till like 1 or 2? And one thing I havent thought about yet, but is the smartest thing to do, to when you wake up in the morning, take nuvigil to keep me up the whole day with my 3oclock nap, and THEN I will get proper sleep that evening?

If you drink, skip the Xyrem that night. Alcohol and Xyrem can both slow your breathing, so taking them both together is extremely dangerous.

So, you've been on the Xyrem for 2.5 months. It can take a few months to start to notice a difference, sometimes even a little longer. And you've got to take it consistently in order to give it a fair chance. How long are you waiting between the last time you eat and the first dose of Xyrem? I know the pharmacy says two hours is adequate, but I find that I get much better results if I wait at least three hours. I also went gluten-free (not only for N but for other GI issues as well) and it has removed a layer of fatigue and brain fog. I'm working on reducing my carbs as well to see if I get any additional relief.

Exercise is good for your body AND your mind. Even if you only walk, it's still more than sitting on the couch.

I hope you start feeling better soon and can get the lease figured out. Good luck!

[The Dreamer]

Something I learned at the conference last weekend....in the Xyrem Q&A session, that the doses don't both have to be the same.... and many people there confirmed that they were doing that to be less foggy in the morning. So, I tried that during the conference, and was surprised at how well that worked. Also 4 hours isn't necessarily when you should be taking your next dose....its more important to get in two doses than to get 8 hours. Just make sure you don't have to operating heavy machinery, etc. until at least 6 hours after the first dose. Which was also a surprise, I and others thought that was after a dose (or last dose)....

Since I was only getting about 6 to 6.5 hours of sleep during the conference, I was skipping the second dose at first...but doing a smaller second dose 2.5-3 hours after the first worked way better.

She also mentioned it doesn't have to be 2 doses...it can be 3, just as long as the total for the night doesn't go over 9g. Though I also heard of a case where the second dose is bigger than the first, because the patient had a tendency to get out of bed during the second.... it was also good that she mentioned that she has many patients that are treating their RLS while on Xyrem. The SDS script says no other CNS depressants with Xyrem...and they aren't flexible on it. I was on Requip (Ropinirole) for my RLS. She said she has a number of patients on Mirapex (pramipexole), Requip or Gabapentin....she even has one on Valium. Though she mentioned that when she's concerned about interaction problems...she'll have the patient sleep the first few nights in the sleep lab. Which can be a problem though, since its really expensive and usually not covered by insurance.

Though since I didn't discontinue Ropinirole right away when I started Xyrem, I suppose it should be safe to go back on....though I guess I'll wait until my next appointment....

The Dreamer.

[Megssosleepy]

Something I learned at the conference last weekend....in the Xyrem Q&A session, that the doses don't both have to be the same.... and many people there confirmed that they were doing that to be less foggy in the morning. So, I tried that during the conference, and was surprised at how well that worked. Also 4 hours isn't necessarily when you should be taking your next dose....its more important to get in two doses than to get 8 hours. Just make sure you don't have to operating heavy machinery, etc. until at least 6 hours after the first dose. Which was also a surprise, I and others thought that was after a dose (or last dose)....

Since I was only getting about 6 to 6.5 hours of sleep during the conference, I was skipping the second dose at first...but doing a smaller second dose 2.5-3 hours after the first worked way better.

She also mentioned it doesn't have to be 2 doses...it can be 3, just as long as the total for the night doesn't go over 9g. Though I also heard of a case where the second dose is bigger than the first, because the patient had a tendency to get out of bed during the second....

The Dreamer.

I have the problem where I don't get more then 2.5 hours on my first dose, did they mention anything about why some people get the full 4 hours while others are wide awake after 2 hours and have to wait 30mins to take the second dose?

This was all very interesting, I wish I could have gone to the conference! Sounds like you got a lot of valuable information! Thanks for posting!

[The Dreamer]

I have the problem where I don't get more then 2.5 hours on my first dose, did they mention anything about why some people get the full 4 hours while others are wide awake after 2 hours and have to wait 30mins to take the second dose?

This was all very interesting, I wish I could have gone to the conference! Sounds like you got a lot of valuable information! Thanks for posting!

Don't recall anybody asking...didn't occur to me to ask after I got my RLS question answered....which I had to follow her out into the hallway to ask, and miss the next session (which I had wanted to catch as well.)

This has happened to me a few times....so either I'll just keep sleeping in small fragments until its over the 2.5 hour mark, or I'll take a melatonin and then take my next dose once I'm over the mark. When I had asked my own doctor about it, he said insomnia can still happen on Xyrem. Especially if I'm not staying awake all day.... or from other reasons.... Like I haven't been applying all the things I'm supposed to from my cognitive behavior therapy for insomnia since I started Xyrem. Need to work on getting back into that routine.

The Dreamer.