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#1 Mrs Nightminds

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Posted 31 October 2012 - 03:11 PM

Hi everyone,

I've only been diagnosed with Narcolepsy since August 2012 so I'm just beginning. My doctor (pulminary specialist) prescribed Dexamphetamine as the first medication to try. It's easier to access (here in Australia) and the insurance company want you to try that before Modavigil and prove that you need the Modavigil if the Dex is a no go.

I've have a Mental Ilness history so we (Dr, psychiatrist and myself) were a little wary but willing to try. Long story short, it didn't go well. I had to come off anti depressants (Effexor XR) to do the MSLT because they are REM inhibiting and since coming off them I've felt increasingly "wobbly" and the Dex seemed to light a rocket under my bum and fast forward any sort of need for anti depressants again. The good news is the psychiatrist has me trying Valdoxan (which has the added bonus of assisting night time sleep through interaction with Melatonin). The bad news is I'm scared stiff to try anything else. I know Modavigil isn't a ferocious stimulant in the way that Dex is but I'm still really concerned. I have two young children (6.5 and 2.5) and I can't afford any more "false starts" on medications that have the potential to have such awful side effects. To be honest, I'm questioning whether or not I really need anything. Before the diagnosis I was INSANELY tired. It turned out I had sleep apnea AND Narcolepsy. I then lost close to 35kg and the sleep apnea has gone (proven through a night time sleep study). Yes I still get sleep attacks during the day but the difference between now and 35kg/SA ago is phenomenal. 5/7 days I don't "need" a day time sleep, in that I can push through (sometimes grumpily so lol but still!), whereas before I was struggling to get to 11am, then I'd put my baby to bed and I'd sleep the entire time he did.


I know my fear of medication is driving me a little, but is trying to do it medication free really undoable? When I read about Narcolepsy I just keep reading about the medication as if it's the only option. I absolutely respect that for some people it is, and some days it feels like it is for me, but do people do it med free? I've been like this, to varying degrees for about 15-17 years (we think) and during that time I've worked and had children and functioned fairly normally. To be honest, I coped with it better before the diagnosis!



Any thoughts or advice would be wonderful:)

#2 DeathRabbit

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Posted 31 October 2012 - 05:07 PM

Hi everyone,

I've only been diagnosed with Narcolepsy since August 2012 so I'm just beginning. My doctor (pulminary specialist) prescribed Dexamphetamine as the first medication to try. It's easier to access (here in Australia) and the insurance company want you to try that before Modavigil and prove that you need the Modavigil if the Dex is a no go.

I've have a Mental Ilness history so we (Dr, psychiatrist and myself) were a little wary but willing to try. Long story short, it didn't go well. I had to come off anti depressants (Effexor XR) to do the MSLT because they are REM inhibiting and since coming off them I've felt increasingly "wobbly" and the Dex seemed to light a rocket under my bum and fast forward any sort of need for anti depressants again. The good news is the psychiatrist has me trying Valdoxan (which has the added bonus of assisting night time sleep through interaction with Melatonin). The bad news is I'm scared stiff to try anything else. I know Modavigil isn't a ferocious stimulant in the way that Dex is but I'm still really concerned. I have two young children (6.5 and 2.5) and I can't afford any more "false starts" on medications that have the potential to have such awful side effects. To be honest, I'm questioning whether or not I really need anything. Before the diagnosis I was INSANELY tired. It turned out I had sleep apnea AND Narcolepsy. I then lost close to 35kg and the sleep apnea has gone (proven through a night time sleep study). Yes I still get sleep attacks during the day but the difference between now and 35kg/SA ago is phenomenal. 5/7 days I don't "need" a day time sleep, in that I can push through (sometimes grumpily so lol but still!), whereas before I was struggling to get to 11am, then I'd put my baby to bed and I'd sleep the entire time he did.


I know my fear of medication is driving me a little, but is trying to do it medication free really undoable? When I read about Narcolepsy I just keep reading about the medication as if it's the only option. I absolutely respect that for some people it is, and some days it feels like it is for me, but do people do it med free? I've been like this, to varying degrees for about 15-17 years (we think) and during that time I've worked and had children and functioned fairly normally. To be honest, I coped with it better before the diagnosis!



Any thoughts or advice would be wonderful:)

In general, mine and others experiences have shown me that the Vigil drugs are really only useful in case of very mild narcolepsy. And the side effects were worse than the traditional stimulants for me and many others. I felt like I was floating out of my body and I was losing grasp on reality and the idea of being a human being itself whilst on provigil and nuvigil. I would recommend trying Xyrem if I were you.

#3 MINItron

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Posted 31 October 2012 - 07:26 PM

Hi everyone,

I've only been diagnosed with Narcolepsy since August 2012 so I'm just beginning. My doctor (pulminary specialist) prescribed Dexamphetamine as the first medication to try. It's easier to access (here in Australia) and the insurance company want you to try that before Modavigil and prove that you need the Modavigil if the Dex is a no go.

I've have a Mental Ilness history so we (Dr, psychiatrist and myself) were a little wary but willing to try. Long story short, it didn't go well. I had to come off anti depressants (Effexor XR) to do the MSLT because they are REM inhibiting and since coming off them I've felt increasingly "wobbly" and the Dex seemed to light a rocket under my bum and fast forward any sort of need for anti depressants again. The good news is the psychiatrist has me trying Valdoxan (which has the added bonus of assisting night time sleep through interaction with Melatonin). The bad news is I'm scared stiff to try anything else. I know Modavigil isn't a ferocious stimulant in the way that Dex is but I'm still really concerned. I have two young children (6.5 and 2.5) and I can't afford any more "false starts" on medications that have the potential to have such awful side effects. To be honest, I'm questioning whether or not I really need anything. Before the diagnosis I was INSANELY tired. It turned out I had sleep apnea AND Narcolepsy. I then lost close to 35kg and the sleep apnea has gone (proven through a night time sleep study). Yes I still get sleep attacks during the day but the difference between now and 35kg/SA ago is phenomenal. 5/7 days I don't "need" a day time sleep, in that I can push through (sometimes grumpily so lol but still!), whereas before I was struggling to get to 11am, then I'd put my baby to bed and I'd sleep the entire time he did.


I know my fear of medication is driving me a little, but is trying to do it medication free really undoable? When I read about Narcolepsy I just keep reading about the medication as if it's the only option. I absolutely respect that for some people it is, and some days it feels like it is for me, but do people do it med free? I've been like this, to varying degrees for about 15-17 years (we think) and during that time I've worked and had children and functioned fairly normally. To be honest, I coped with it better before the diagnosis!



Any thoughts or advice would be wonderful:)



#4 MINItron

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Posted 31 October 2012 - 07:48 PM

I would suggest reading through the Provigil Users Poll in the medication station forum. There are more people's experiences there. Just like any of the stimulants Modanifil (AKA Provigil) works great for some people, but is horrid for others.

Xyrem does work great for many, but I don't know if that is an option in Australia. It is also scary to many, but works in a different way by helping you to get a full nights sleep. If the Valdoxan helps you to get a full, restful nights sleep then that may actually be what you need.

#5 Mrs Nightminds

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Posted 31 October 2012 - 08:04 PM

I would suggest reading through the Provigil Users Poll in the medication station forum. There are more people's experiences there. Just like any of the stimulants Modanifil (AKA Provigil) works great for some people, but is horrid for others.

Xyrem does work great for many, but I don't know if that is an option in Australia. It is also scary to many, but works in a different way by helping you to get a full nights sleep. If the Valdoxan helps you to get a full, restful nights sleep then that may actually be what you need.



MINItron! Hi! I'm on Ravelry and we've been chatting in a thread a little about my experience with Dex. Small world this Narcolepsy world is!


I wasn't aware that Xyrem was used for "straight" narcolepsy. I thought it was more used when someone has Cataplexy.



Thanks for your input as well, DeathRabbit. I know everyone's experiences are different but it's reactions like yours that worry me.



I think what I want to do, and what I'll present to the doctor, is try and see how Valdoxan goes. As I said to the psychiatrist yesterday, who KNOWS what a good night's sleep will do for me. I DEFINITELY feel better now that the sleep apnea is not an issue. This morning I conducted a smallish experiment with myself. I started to get groggy and tired this morning so I made the conscious decision that once I'd dropped my eldest to school, I'd go out with my youngest and not let myself come home and be stagnant (too easy to sleep then). I still felt rather *BEEP*ty when I was out but it definitely was doable.

#6 MINItron

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Posted 31 October 2012 - 10:01 PM

MINItron! Hi! I'm on Ravelry and we've been chatting in a thread a little about my experience with Dex. Small world this Narcolepsy world is!


I wasn't aware that Xyrem was used for "straight" narcolepsy. I thought it was more used when someone has Cataplexy.



Thanks for your input as well, DeathRabbit. I know everyone's experiences are different but it's reactions like yours that worry me.



I think what I want to do, and what I'll present to the doctor, is try and see how Valdoxan goes. As I said to the psychiatrist yesterday, who KNOWS what a good night's sleep will do for me. I DEFINITELY feel better now that the sleep apnea is not an issue. This morning I conducted a smallish experiment with myself. I started to get groggy and tired this morning so I made the conscious decision that once I'd dropped my eldest to school, I'd go out with my youngest and not let myself come home and be stagnant (too easy to sleep then). I still felt rather *BEEP*ty when I was out but it definitely was doable.


Here in the US Xyrem is used for Narcolepsy without cataplexy for those who don't respond to or can't tolerate stimulants.

I thought I might be talking to the same person. The details were just too similar.

#7 Mrs Nightminds

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Posted 01 November 2012 - 01:01 AM

Here in the US Xyrem is used for Narcolepsy without cataplexy for those who don't respond to or can't tolerate stimulants.

I thought I might be talking to the same person. The details were just too similar.



Yep, same person :)


I heard back from the Sleep Doc today and he said I absolutely did the right thing stopping the Dex when I did. He said I had two options at this stage - 1) get established on the Valdoxan and settle down on it and then see him in January; 2) start Modavigil now and come and see him in January. I said I wanted to do 1) because I was scared of trying anything else right now and I feel like things just need to calm down before putting anything else into the mix. He also said he can't guarantee that the same thing that happened on Dex won't happen on Modavigil. He said it's less LIKELY but there are no guarantees. I broached the med free topic and he said he most definitely has patients who dont take stimulants and just nap when they can and they manage fairly well. I'm a little scared of that because I'm planning on going back to work (teaching) next year. Having said that, there were many years I studied/taught with undiagnosed Narcolepsy and managed fairly ok. So fingers crossed! Such a relief that I felt that the doctor was "on my side". I was braced for a right telling off. Ridiculous!

#8 DeathRabbit

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Posted 01 November 2012 - 09:26 AM

Yep, same person :)


I heard back from the Sleep Doc today and he said I absolutely did the right thing stopping the Dex when I did. He said I had two options at this stage - 1) get established on the Valdoxan and settle down on it and then see him in January; 2) start Modavigil now and come and see him in January. I said I wanted to do 1) because I was scared of trying anything else right now and I feel like things just need to calm down before putting anything else into the mix. He also said he can't guarantee that the same thing that happened on Dex won't happen on Modavigil. He said it's less LIKELY but there are no guarantees. I broached the med free topic and he said he most definitely has patients who dont take stimulants and just nap when they can and they manage fairly well. I'm a little scared of that because I'm planning on going back to work (teaching) next year. Having said that, there were many years I studied/taught with undiagnosed Narcolepsy and managed fairly ok. So fingers crossed! Such a relief that I felt that the doctor was "on my side". I was braced for a right telling off. Ridiculous!


Just keep in mind that any long term medication with meds that alter neurochemistry is going to have a law of diminishing effects and unintended consequences. I find it's been helpful to round robin the stimulants. Currently on Focalin XR, a structural chimera for Ritalin, and it seems to be doing well, with decreased side effects. I was on Adderall, but it got to the point where it'd only pick me up for half an hour and then I'd feel even tireder, and the irritability was awful.

#9 Megssosleepy

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Posted 01 November 2012 - 11:30 AM

I have a hard time with stimulants and have settled on a low dose taken as needed of just good ol Adderall. Its nice because if I need it I take it I wake up in about 5/10 minutes... if I don't need it I don't take it. Also, I am on Xyrem... it has been a life saver for me. Getting Slow Wave Sleep has completely wiped the Depression I have had for over 10 years away! It truly is amazing what a good night rest can do.

As far as going med free, I got this really awesome book off amazon called Prescription for Nutritional Healing... My link

The book has given me so many great ideas for my N as well as any other hiccup along my way. It suggest supplements and vitamins as well as times of the day to eat certain foods (sleepy foods and wake up foods)

I am hoping soon I can skip the stimulants... and only be on Xyrem as well as follow the tips in this book!
:)
I understand your fears... I really do not like most of the drugs Ive been on, but the way our brains work it can be hard to go 100% natural, so if that doesn't work for you don't be to hard on yourself... take it slow and you will figure out what works and what doesn't work for you! Good luck going back to work!!!

#10 Delta

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Posted 02 November 2012 - 10:37 AM

Hello Nightminds. I'm glad you started this thread because I've been feeling the same way recently. I've been on Xyrem since January, now at 5ml and 4ml. I also have RLS, so I take 600mg of Horizant 4-5 hours before bedtime, plus Lamictal 100mg x2 a day to help with HH. I've also been on Nuvigil 250mg since February or March.

My problem is that it takes me 45-90 min. to fall asleep on the Xyrem, even at 5ml on the first dose, even waiting 4hours after eating to take it. I fall into a doze, and just as I'm going to drift into sleep, my brain goes back into doze mode, and the muscles and tendons in my neck and head become very tight, with some spasming and twitching. The longer this goes on, the more awake I become, so sometimes I don't sleep at all on the first dose. After enduring nine months of this, my sleep doc finally decided to put me on Sonata 5mg 30min. before I take my fist Xyrem dose. That was over two weeks ago, and I'm still not falling into sleep any sooner. The Sonata does mitigate the tightening tendons and muscles and lessens the spasms, but I still immediately fall into a doze, and just as I'm drifting deliciously in to sleep, I'm pulled back into the doze. Before he prescribed the Sonata, my doc asked what thoughts were going through my head when this was happening. I told him I have no coherent thoughts during this, except maybe please let me sleep. After I take the second dose, sometimes I can sleep for 5hours, but more often I wake up 2 ½ to 3 ½ hours after taking it, and then just doze until it's time to get up.

I wake up every morning feeling like I haven't slept at all, take my Nuvigil, then wait an hour for it to wake me up enough to spend my day in an unfocused daze, and barely enough energy to shower and feed myself. I'm so sleepy all day, but can't nap either, just lightly doze if anything. I look forward to bedtime all day long, hoping it will be better each night, but it's not.

I'm currently on Med. leave from my job (I'm a teacher too) and can't imagine ever going back to work if I never get any better than this. If I can't work any way, I've began wondering if it would be better for me to discontinue all the meds except the Horizant. Back before I was on any med. except one to treat the RLS, I could fall asleep in 5min or less day or night, and feel at least somewhat refreshed and awake for few hours. Now I never feel refreshed, or truly awake.

In the past, I was on Adderall for awhile, and later Ritalin. I really didn't like either of them, since I felt they sped me up too fast and left my brain too sleepy, but at least I had energy to do things, even if I did crash heavily later. That was also before I was on Xyrem, so maybe I would react differently to them now? I've tried Effexor too, but I will never touch terrible drug again.

Sorry for such a long response. I hope I haven't hijacked your thread, Mrs Nightminds. I'm just really scared to try anything else too. I feel as if I've been tortured with meds that don't work for the last two years now, and I'm no better, than I was before taking them, worse even (with the exception of the RLS med-which has worked wonders!).

I would be glad of any thoughts or suggestions as well.

Thanks for reading. Delta

#11 DeathRabbit

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Posted 02 November 2012 - 11:13 AM

Hello Nightminds. I'm glad you started this thread because I've been feeling the same way recently. I've been on Xyrem since January, now at 5ml and 4ml. I also have RLS, so I take 600mg of Horizant 4-5 hours before bedtime, plus Lamictal 100mg x2 a day to help with HH. I've also been on Nuvigil 250mg since February or March.

My problem is that it takes me 45-90 min. to fall asleep on the Xyrem, even at 5ml on the first dose, even waiting 4hours after eating to take it. I fall into a doze, and just as I'm going to drift into sleep, my brain goes back into doze mode, and the muscles and tendons in my neck and head become very tight, with some spasming and twitching. The longer this goes on, the more awake I become, so sometimes I don't sleep at all on the first dose. After enduring nine months of this, my sleep doc finally decided to put me on Sonata 5mg 30min. before I take my fist Xyrem dose. That was over two weeks ago, and I'm still not falling into sleep any sooner. The Sonata does mitigate the tightening tendons and muscles and lessens the spasms, but I still immediately fall into a doze, and just as I'm drifting deliciously in to sleep, I'm pulled back into the doze. Before he prescribed the Sonata, my doc asked what thoughts were going through my head when this was happening. I told him I have no coherent thoughts during this, except maybe please let me sleep. After I take the second dose, sometimes I can sleep for 5hours, but more often I wake up 2 ½ to 3 ½ hours after taking it, and then just doze until it's time to get up.

I wake up every morning feeling like I haven't slept at all, take my Nuvigil, then wait an hour for it to wake me up enough to spend my day in an unfocused daze, and barely enough energy to shower and feed myself. I'm so sleepy all day, but can't nap either, just lightly doze if anything. I look forward to bedtime all day long, hoping it will be better each night, but it's not.

I'm currently on Med. leave from my job (I'm a teacher too) and can't imagine ever going back to work if I never get any better than this. If I can't work any way, I've began wondering if it would be better for me to discontinue all the meds except the Horizant. Back before I was on any med. except one to treat the RLS, I could fall asleep in 5min or less day or night, and feel at least somewhat refreshed and awake for few hours. Now I never feel refreshed, or truly awake.

In the past, I was on Adderall for awhile, and later Ritalin. I really didn't like either of them, since I felt they sped me up too fast and left my brain too sleepy, but at least I had energy to do things, even if I did crash heavily later. That was also before I was on Xyrem, so maybe I would react differently to them now? I've tried Effexor too, but I will never touch terrible drug again.

Sorry for such a long response. I hope I haven't hijacked your thread, Mrs Nightminds. I'm just really scared to try anything else too. I feel as if I've been tortured with meds that don't work for the last two years now, and I'm no better, than I was before taking them, worse even (with the exception of the RLS med-which has worked wonders!).

I would be glad of any thoughts or suggestions as well.

Thanks for reading. Delta


You might wish to lessen the nootropic dosage. Sleeplessness is a common side effect of those. I'm given to understand it gets your h3 receptors going liek gang busters, which is good because it promotes clear-headedness, but it can prevent falling out of beta consciousness.

#12 Hank

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Posted 02 November 2012 - 12:51 PM

Hello Nightminds. I'm glad you started this thread because I've been feeling the same way recently. I've been on Xyrem since January, now at 5ml and 4ml. I also have RLS, so I take 600mg of Horizant 4-5 hours before bedtime, plus Lamictal 100mg x2 a day to help with HH. I've also been on Nuvigil 250mg since February or March.

My problem is that it takes me 45-90 min. to fall asleep on the Xyrem, even at 5ml on the first dose, even waiting 4hours after eating to take it. I fall into a doze, and just as I'm going to drift into sleep, my brain goes back into doze mode, and the muscles and tendons in my neck and head become very tight, with some spasming and twitching. The longer this goes on, the more awake I become, so sometimes I don't sleep at all on the first dose. After enduring nine months of this, my sleep doc finally decided to put me on Sonata 5mg 30min. before I take my fist Xyrem dose. That was over two weeks ago, and I'm still not falling into sleep any sooner. The Sonata does mitigate the tightening tendons and muscles and lessens the spasms, but I still immediately fall into a doze, and just as I'm drifting deliciously in to sleep, I'm pulled back into the doze. Before he prescribed the Sonata, my doc asked what thoughts were going through my head when this was happening. I told him I have no coherent thoughts during this, except maybe please let me sleep. After I take the second dose, sometimes I can sleep for 5hours, but more often I wake up 2 ½ to 3 ½ hours after taking it, and then just doze until it's time to get up.

I wake up every morning feeling like I haven't slept at all, take my Nuvigil, then wait an hour for it to wake me up enough to spend my day in an unfocused daze, and barely enough energy to shower and feed myself. I'm so sleepy all day, but can't nap either, just lightly doze if anything. I look forward to bedtime all day long, hoping it will be better each night, but it's not.

I'm currently on Med. leave from my job (I'm a teacher too) and can't imagine ever going back to work if I never get any better than this. If I can't work any way, I've began wondering if it would be better for me to discontinue all the meds except the Horizant. Back before I was on any med. except one to treat the RLS, I could fall asleep in 5min or less day or night, and feel at least somewhat refreshed and awake for few hours. Now I never feel refreshed, or truly awake.

In the past, I was on Adderall for awhile, and later Ritalin. I really didn't like either of them, since I felt they sped me up too fast and left my brain too sleepy, but at least I had energy to do things, even if I did crash heavily later. That was also before I was on Xyrem, so maybe I would react differently to them now? I've tried Effexor too, but I will never touch terrible drug again.

Sorry for such a long response. I hope I haven't hijacked your thread, Mrs Nightminds. I'm just really scared to try anything else too. I feel as if I've been tortured with meds that don't work for the last two years now, and I'm no better, than I was before taking them, worse even (with the exception of the RLS med-which has worked wonders!).

I would be glad of any thoughts or suggestions as well.

Thanks for reading. Delta


What a drag. A good night sleep is all we ask- why is it so hard to get. I had been waiting 3 hours after meals to take Xyrem. I am now at 2 hours- it has helped so I am not hungry while trying to sleep. I seem be sleep better this way. A little trick I use on nights when it is hard to fall asleep- a glass of ice water and a heating pad on my feet. A cold belly and warm extremities seems to induce sleep- consider trying it as a non-medication option. I suffered from rebound insomnia after discontinuing a medication and this really helped me, surprisingly. Exercise several hours before bedtime is a big help also. I am committed to sticking with Xyrem because it is the only thing to increase slow wave sleep and it can take a long time to work off a long sleep debt.

It seems that my body is so accustomed to so little sleep. I fall asleep easiest when I am exhausted. The longer I am on Xyrem, the better I am during the day but my night sleep has become more fragile. I am super sensitive to light and sound at night so I use a sound machine (white noise) and cover all light sources- like those little lights on power cords. The little things seem to make a big difference. I hope some of this might be helpful. If not, you sure have my empathy because I know the struggle from my own experience. I hope you find improvement soon.

#13 DeathRabbit

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Posted 02 November 2012 - 02:13 PM

What a drag. A good night sleep is all we ask- why is it so hard to get. I had been waiting 3 hours after meals to take Xyrem. I am now at 2 hours- it has helped so I am not hungry while trying to sleep. I seem be sleep better this way. A little trick I use on nights when it is hard to fall asleep- a glass of ice water and a heating pad on my feet. A cold belly and warm extremities seems to induce sleep- consider trying it as a non-medication option. I suffered from rebound insomnia after discontinuing a medication and this really helped me, surprisingly. Exercise several hours before bedtime is a big help also. I am committed to sticking with Xyrem because it is the only thing to increase slow wave sleep and it can take a long time to work off a long sleep debt.

It seems that my body is so accustomed to so little sleep. I fall asleep easiest when I am exhausted. The longer I am on Xyrem, the better I am during the day but my night sleep has become more fragile. I am super sensitive to light and sound at night so I use a sound machine (white noise) and cover all light sources- like those little lights on power cords. The little things seem to make a big difference. I hope some of this might be helpful. If not, you sure have my empathy because I know the struggle from my own experience. I hope you find improvement soon.


I seem to be the opposite. If I get really exhausted I become sorta dysautnomic and I find it difficult to rest.

#14 Mrs Nightminds

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Posted 02 November 2012 - 03:27 PM

Hello Nightminds. I'm glad you started this thread because I've been feeling the same way recently. I've been on Xyrem since January, now at 5ml and 4ml. I also have RLS, so I take 600mg of Horizant 4-5 hours before bedtime, plus Lamictal 100mg x2 a day to help with HH. I've also been on Nuvigil 250mg since February or March.

My problem is that it takes me 45-90 min. to fall asleep on the Xyrem, even at 5ml on the first dose, even waiting 4hours after eating to take it. I fall into a doze, and just as I'm going to drift into sleep, my brain goes back into doze mode, and the muscles and tendons in my neck and head become very tight, with some spasming and twitching. The longer this goes on, the more awake I become, so sometimes I don't sleep at all on the first dose. After enduring nine months of this, my sleep doc finally decided to put me on Sonata 5mg 30min. before I take my fist Xyrem dose. That was over two weeks ago, and I'm still not falling into sleep any sooner. The Sonata does mitigate the tightening tendons and muscles and lessens the spasms, but I still immediately fall into a doze, and just as I'm drifting deliciously in to sleep, I'm pulled back into the doze. Before he prescribed the Sonata, my doc asked what thoughts were going through my head when this was happening. I told him I have no coherent thoughts during this, except maybe please let me sleep. After I take the second dose, sometimes I can sleep for 5hours, but more often I wake up 2 ½ to 3 ½ hours after taking it, and then just doze until it's time to get up.

I wake up every morning feeling like I haven't slept at all, take my Nuvigil, then wait an hour for it to wake me up enough to spend my day in an unfocused daze, and barely enough energy to shower and feed myself. I'm so sleepy all day, but can't nap either, just lightly doze if anything. I look forward to bedtime all day long, hoping it will be better each night, but it's not.

I'm currently on Med. leave from my job (I'm a teacher too) and can't imagine ever going back to work if I never get any better than this. If I can't work any way, I've began wondering if it would be better for me to discontinue all the meds except the Horizant. Back before I was on any med. except one to treat the RLS, I could fall asleep in 5min or less day or night, and feel at least somewhat refreshed and awake for few hours. Now I never feel refreshed, or truly awake.

In the past, I was on Adderall for awhile, and later Ritalin. I really didn't like either of them, since I felt they sped me up too fast and left my brain too sleepy, but at least I had energy to do things, even if I did crash heavily later. That was also before I was on Xyrem, so maybe I would react differently to them now? I've tried Effexor too, but I will never touch terrible drug again.

Sorry for such a long response. I hope I haven't hijacked your thread, Mrs Nightminds. I'm just really scared to try anything else too. I feel as if I've been tortured with meds that don't work for the last two years now, and I'm no better, than I was before taking them, worse even (with the exception of the RLS med-which has worked wonders!).

I would be glad of any thoughts or suggestions as well.

Thanks for reading. Delta




Gosh you poor thing :-( I'm honestly leaning towards not taking anything at all and gritting my teeth through it all. It's what I was doing for the 15 years or so before diagnosis and I was functioning better then. Strange.

It's really hard too, not sure if you're the same, when you tend to latch on to things and put great hope in them only to feel let down when they don't work out. That's how I'm feeling about this whole thing at the moment. I almost need to stop myself reading forums and googling "Narcolepsy" because I read something promising and get it stuck in my mind only to read the opposite soon after.

That's good you were able to get medical leave. I'm wanting to go back to teaching after having 8 years off having children. A lot depends (financially) on me going back to work for our family so I'm feeling the added pressure of that even though I know I was working at a time that I had Narcolepsy, was doing fine and just battled through.

I think what I'm struggling most with at the moment, and it may well just be the associated depression and anxiety, is the emotional rollercoaster. One moment I feel hopeful and somewhat awake and then the tiredness hits and I delve into the depths of "oh *BEEP*, here we go again". I honestly, honestly wish (and yes I know I'm being dramatic) that I'd never come off Effexor and done the MSLT.

For those "in the know"....is it fairly normal to go through this sort of depressive/melodramatic/angry/hopeless and helpless sort of talk and feelings after diagnosis?