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Other Meds For Sleep At Night?


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#1 music_man

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Posted 15 June 2009 - 03:36 PM

After talking to my doctor and family about N and drugs like Xyrem (they couldn't believe that GHB is prescribed for N), I started to wonder why other sleep meds like Lunesta or Ambien aren't prescribed to assist PWN in getting a good night's sleep.

My assumption is that these exacerbate or do not improve the disordered REM cycles that cause many of the problems in PWN.

Are there any doctor's in the house? Or N experts? Or links to medical studies or research?

Thanks!

#2 sunrisemoon

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Posted 15 June 2009 - 09:22 PM

QUOTE (music_man @ Jun 16 2009, 06:36 AM) <{POST_SNAPBACK}>
After talking to my doctor and family about N and drugs like Xyrem (they couldn't believe that GHB is prescribed for N), I started to wonder why other sleep meds like Lunesta or Ambien aren't prescribed to assist PWN in getting a good night's sleep.

My assumption is that these exacerbate or do not improve the disordered REM cycles that cause many of the problems in PWN.

Are there any doctor's in the house? Or N experts? Or links to medical studies or research?

Thanks!

I take Endep (may be called something else in the US/Canada/UK) at night, which is actually a drug normally prescribed to people with epilepsy to stop them having fits. The doc also told me it's given to some people who suffer from migraines. This works, I know, because it definitely reduced the effects of a migraine I had on Sunday afternoon. The reason I take it is because it reduces REM quite a lot. It took about 4 weeks for it to really start to work and during that initial 4 weeks it just made me feel stupid and drunk. I don't get those side effects now, though.

I can't comment on the other drugs you've mentioned, because I've never taken any of them.

#3 drago

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Posted 16 June 2009 - 01:19 AM

QUOTE (music_man @ Jun 15 2009, 09:36 PM) <{POST_SNAPBACK}>
After talking to my doctor and family about N and drugs like Xyrem (they couldn't believe that GHB is prescribed for N), I started to wonder why other sleep meds like Lunesta or Ambien aren't prescribed to assist PWN in getting a good night's sleep.

My assumption is that these exacerbate or do not improve the disordered REM cycles that cause many of the problems in PWN.

Are there any doctor's in the house? Or N experts? Or links to medical studies or research?

Thanks!


Before I was diagnosed with narcolepsy, I looked into drugs like Ambien or Lunesta because when I was hit with waves of short-term insomnia, I would also be slapped with terrible sleep paralysis. But, the more SP I had, the more insomnia I would have... so I was looking into my options besides diphenhydromine (in a lot of those "PM" medications).

The problem with pills like Ambien & Lunesta is that they're generally used on a short-term basis for a lot of reasons, like addiction and such. I also know that Ambien was a definite no-no because of sleep walking or some other weird action/sleep/memory issue with it. Also, both pills require 7-8 hours dedicated to sleeping each night... or you're unsafe. I hear Xyrem is a 4-hour drug.

...but why specifically they aren't used with N? I don't know...

drago

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Posted 16 June 2009 - 02:29 AM

My doctor just prescribed Triazolam...it's a benzodiazepine sleeping pill. I haven't started taking it yet though. It's strong stuff, but I'm not that optimistic that it's going to work. He said if it doesn't work, then he'll prescribe Xyrem. I don't really get why he didn't just prescribe Xyrem instead.
I'll post again about it in a few days after I've tried it.

#5 Henry G

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Posted 16 June 2009 - 02:57 AM

for me the perfect medicine would have to be something which is not a depressant.

even Ambien (pure evil) is not purely a hypnotic - it is also a depressant

I would need something that does not depress my respiratory system during sleep, because I stop breathing or breath poorly - "apnea" I think.

I still don't get though - why is REM bad? I thought it was good to dream. Escape from the chores of this world.

#6 jenji

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Posted 16 June 2009 - 06:24 AM

B/c henry, REM displays theta and beta brainwaves. Simply put, your brain is operating as if it were awake and therefore not getting the proper downtime to repair and rest.

Music_man: Xyrem is the only drug known to properly consolidate the sleep cycles of the narcoleptic, all other drugs are pretty much a band-aid on a gaping wound: they don't induce slow-wave sleep, Xyrem does.

Btw, I believe the cost of Xyrem is so out of control b/c they don't have any competition from other manufactures.

jenji

#7 music_man

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Posted 16 June 2009 - 06:40 PM

Thanks everyone for chiming in biggrin.gif

Every little bit of information helps! My parents are really harping on me about the is-it/is-it-not narcolepsy thing, so I asked the doc for a second opinion or _something_ (it's nice to know what I have, but I know I don't want it to be anything, in fact, if a simple change in diet "cured" me, I would be there in half a heartbeat!). He mentioned that I could get my HLA typing done (he made it sound like the best way to do this was to do a lumbar puncture... which I know will help show if my hypocretin/orexin levels are low in my CSF, but I didn't realize my CSF was the best way to get my HLA typing done, can anyone verify?). So I'll be having an LP sometime in the next month.

jenji: "out of control" is how I would describe the price of Xyrem too! angry.gif I understand the potential abuse factor, but I don't buy that as the sole reason a chemical that can be cheaply and easily produced is so expensive.

Thanks for the verification on the other PM medications. That was my assumption... they are pretty much depressants to push people into sleep. Not a particularly good thing for people who don't get good sleep in the first place...

Thanks again!

#8 jenji

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Posted 16 June 2009 - 07:32 PM

QUOTE (music_man @ Jun 16 2009, 07:40 PM) <{POST_SNAPBACK}>
He mentioned that I could get my HLA typing done (he made it sound like the best way to do this was to do a lumbar puncture... which I know will help show if my hypocretin/orexin levels are low in my CSF, but I didn't realize my CSF was the best way to get my HLA typing done, can anyone verify?). So I'll be having an LP sometime in the next month.


Musicman:

Hey there.

well, my doc originally wanted me to have the lumbar puncture as well, but i have to say after all i'd been through over the past 15 years there was no way in Hell I was having that procedure done if I absolutely didn't have to.

Here's the thing: my doc really suspected N given my profound fatigue, EDS, disrupted sleep, HH, SP and "fainting" issues over the years upon excessive fear and/or anger and so he wanted to treat me for N, however he insisted that he wouldn't be able to prescribe Xyrem and further, my insurance would not approve it if we didn't have a definitive N dx, wherein my first sleep study had borderline results when it came to sleep latency (my average was 11min, which did not fulfill diagnostic evidence for N), although I went into REM 4 out of 5 naps and so he certainly still suspected that I had N, but again would not be able to prescribe Xyrem without a definitive dx, as he didn't believe the drug/insurance company would buy such a borderline dx despite the fact that he was more than sure that I had N.

And so he suggested that I have the lumbar puncture as further evidence that would allow me access to the proper drugs, however he mentioned that the CSF will indeed show depleted levels of hypocretin in individuals who have Narcolepsy WITH cataplexy, however if you have mild cataplexy (which i have mild/moderate C) or just N without cataplexy then the lumbar test can in essence come back negative, wherein he added, "but a negative lumbar puncture does not mean you don't have N, it would just indicate that you don't have cataplexy."

And so I was thinking: what? I mean, what? What's the point of having such an invasive procedure if only to amuse the insurance company/Xyrem folks if it cannot be completely indicative one way or the other? I mean, what's the point? He eventually agreed with me and on a whim he called the Xyrem folks who (surprise) approved me and then my insurance company who also approved me sans the lumbar puncture. Very unexpected. All that worry about getting a LP for nothing.

Anyway, I asked about a 2nd opinion and so we did repeat the MSLT sleep study to further confirm his N dx (another doc in clinic read results of this 2nd test as well) and so in the end I had 2 studies indicative of N (the first one's borderline compenents he later attributed to drugs I was on at the time (uppers for bipolar, nice) and so for test #2 I weaned off all drugs for better accuracy). My second sleep study was far more classic in that I went into REM very quickly in 4 out of 5 naps (mind you I thought I had only fallen asleep during one nap) and my sleep latency was also shorter.

Finally, he thought it wouldn't hurt to have the HLA blood typing done despite the fact that it cannot be used by itself as a diagnositic tool for N, as 20% of the population has positive results regarding this marker and may never develop symptoms of N in any capacity. Therefore, it's not considered valid as a stand alone diagnostic test, however in addition to my 2 positive sleep studies, my history and background, the HLA blood test pretty much sealed the deal to the 99.999999th degree for me.

I mean, in the end there was still a little part of me that was saying: narcolepsy? really? Nah. i mean, sure I could have written the NIH.gov definition myself, but really? narcolepsy? nah. Once we saw my genetic results we were both grinning like idiots (grinning through tears anyway), not b/c I was so very lucky to have N w/cataplexy, but b/c I was overwhelmed and overcome with vindication, as I had been through years of abusive physicians and misdiagnoses and so this final evidence was bitter sweet for me. Now, if only I can get my celiac testing out of the way, i'll be golden.

Anyway, you may want to think about whether or not the LP will be relevant for your results. If you have symptoms indicative of cataplexy, well then your levels may very well be indicative of N w/C, but if you have mild/moderate cataplexy, your results could come back negative even though you have N with or without C, wherein you would have gone through that for nothing.

Why are you guys so conflicted as to your dx? Did you have borderline sleep study results? Is this just b/c you wanted a second opinion as you said? Are you trying to placate your parents? If so, why not have another sleep study? Or just the blood typing? So much less invasive if you already have one sleep study indicative of N.

It's a personal decision, but just be aware of the loops you're jumping through before you do so.

best of luck,
jenji

#9 music_man

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Posted 17 June 2009 - 09:59 AM

QUOTE (jenji @ Jun 16 2009, 07:32 PM) <{POST_SNAPBACK}>
...

Why are you guys so conflicted as to your dx? Did you have borderline sleep study results? Is this just b/c you wanted a second opinion as you said? Are you trying to placate your parents? If so, why not have another sleep study? Or just the blood typing? So much less invasive if you already have one sleep study indicative of N.

It's a personal decision, but just be aware of the loops you're jumping through before you do so.

best of luck,
jenji


Thanks jenji. It sure does help hearing about your experiences. From what you are saying, there is not really a need to do the LP for the HLA typing (my Dr. made it sound like an LP was the best way to get the HLA typing done).

I'm not really conflicted about my dx (I'd rather it be something else... plenty of people give N a negative stigma and don't understand it), but my parents are pretty upset that the only thing that can be done right now for PWN is stimulants or GHB. I'm old enough, pay for my own medical expenses, and live on my own (although in the same city as my parents). Despite this, I still have to deal with my parents. I'd like to be able to show them with 99.999% that this is what I have. So in short, I am trying to placate my parents because I just don't want to fight over this with them (if you ever met my dad, you would pretty quickly understand he pretty much has a general distate for the medical community - mostly the ones that push meds like spokespeople). Past experiences tell me I should just do what is right for me and let them catch up or stay behind. I'll let them worry about it (as they used to tell me, "the fair only comes around once a year" and "no use crying over spilt milk" tongue.gif )

I did 2 PSGs and an MSLT. My PSGs pretty clearly showed that my EDS wasn't from any apnea-like issues. I went into a wake-state and stopped breathing what the doctor called an average number of times, nothing to worry about (I never knew it was common for anyone to just stop breathing for a short period of time a few times a night). The MSLT was more telling. I fell asleep in all 5 nap periods in an average of ~5 minutes (the last one took around 10 minutes). I went into REM periods almost immediately in 3 of them, and the doc thought I would have went into REM in the last one if I was given just a couple more minutes of sleep (I hadn't lost muscle tone yet although my brain patterns were starting to look like REM). Also, I rarely go to sleep past 11 pm as I have to go to work at 8. I'm a zombie (not in the literal sense) if I don't get enough sleep. I've even got friends (who don't know about the N yet) that call me grandpa because I hardly go out at night and take naps during the day rolleyes.gif

I guess one of the main reasons I seem conflicted about my dx is that I see so many doctors in the US pushing meds and "quick fixes" for numerous diseases. Of course, that's a logical fallacy of guilt by association, to judge the one because of the others. I contacted some of the Stanford research team, and they told me that I wouldn't be able to be included in any studies or volunteer in any way because I don't have Cataplexy. I have moments during the day where I suddenly hit the wall, and feel like I can't continue on. I'll get so tired that I'll take a nap before driving or doing anything else for fear of falling asleep while doing it, but I've never had a true C attack. You are probably right then; an LP is more hoop than I need right now.

I'll make sure I get the HLA typing done and just keep pushing on.

Once again, thanks jenji. It seems like everytime I log in to NN, life doesn't seem as rough as I thought it was. You guys (and gals) are such a great community. biggrin.gif

#10 jenji

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Posted 17 June 2009 - 12:54 PM

[quote name='music_man' date='Jun 17 2009, 10:59 AM' post='10444']
From what you are saying, there is not really a need to do the LP for the HLA typing (my Dr. made it sound like an LP was the best way to get the HLA typing done). Well, the LP is more accurate as a test for N, however if you aren't dealing with cataplexy it is not anymore accurate than the blood test. In fact, it would seem that if you don't have cataplexy symptoms, the blood test would be more accurate in the end.

I'm not really conflicted about my dx (I'd rather it be something else... plenty of people give N a negative stigma and don't understand it), but my parents are pretty upset that the only thing that can be done right now for PWN is stimulants or GHB. That happens with parents et al. in that they're shocked and upset that this is their loved one's only option, but when it comes down to it, it's not about them, it's about you and so just keep your eye on the ball: finding relief, believing in your own diagnosis for your own good and your own good alone and moving forward. Despite this, I still have to deal with my parents. Yes, so did I. I'd like to be able to show them with 99.999% that this is what I have. I wanted to do so as well and in the end it took more energy to try to get them (and in fact anyone else) to understand and so eventually I realized, wtf am I bothering with this for? I have limited energy as it is, use it for something proactive. The only person who need to 'believe' is me and if anyone else can't get it, that's their problem. They're adults and have access to research online just as much as I do, so let them do the ground work. My job was to get as well as I could be, not to educate and prove to anyone that I'm in fact dealing with a neurological condition. To this day my stepfather, stepbrother, stepsister and sis-in-law are beyond ignorant, in fact I gave up on them a long, long time ago, however my mother has come around and is a fantastic support now. She just needed time to work through it on her own; it's amazing how a parent or loved one can make your serious problem all about them, isn't it? She was so worried that I was going to have to be taking "speed." First of all, I never referred to the meds as speed, umkay? So, put away the Oscar winning script already. Anyway, she's a great help to me now when I need it; it took a little under a year for her to completely work through her own issues once I was properly dx'd. Past experiences tell me I should just do what is right for me and let them catch up or stay behind. That's a fantastic idea!

I did 2 PSGs and an MSLT. My PSGs pretty clearly showed that my EDS wasn't from any apnea-like issues. I went into a wake-state and stopped breathing what the doctor called an average number of times, nothing to worry about (I never knew it was common for anyone to just stop breathing for a short period of time a few times a night). The MSLT was more telling. I fell asleep in all 5 nap periods in an average of ~5 minutes (the last one took around 10 minutes). I went into REM periods almost immediately in 3 of them, and the doc thought I would have went into REM in the last one if I was given just a couple more minutes of sleep (I hadn't lost muscle tone yet although my brain patterns were starting to look like REM). Also, I rarely go to sleep past 11 pm as I have to go to work at 8. I'm a zombie (not in the literal sense) if I don't get enough sleep. I've even got friends (who don't know about the N yet) that call me grandpa because I hardly go out at night and take naps during the day rolleyes.gif
It seems as though your sleep studies were quite indicative of N. I'm just curious, do you have any experience with hypngogic hallucinations and sleep paralysis? Do you have disrupted sleep at night with multiple wakings and/or difficulty staying asleep through the night? Do you have any other sx that sent you to the doc (like pain or fevers etc) or was it basically the EDS? I ask, b/c some people have chronic fatigue syndrome or fibromyalgia, as well as narcolepsy. It's funny, in Britain an individual cannot be dx'd with CFS or FM without having first been screened for narcolepsy, which I think is a very good idea. B/c of course excessive sleep deprivation and the fact that narcolepsy is a autoimmune disorder will cause the body to break down in a myriad of ways. But now I've digressed. I do that...

I'll make sure I get the HLA typing done and just keep pushing on. Best of luck.

Once again, thanks jenji. It seems like everytime I log in to NN, life doesn't seem as rough as I thought it was. You guys (and gals) are such a great community. biggrin.gif I have to say, NN is a fantastic resource in that it allows you to share with those who understand the condition, which frees you from the need to tell those around you who will just never get it. I don't tell many people about my N b/c in my experience it's just not worth the aggravation, wherein you find yourself educating others all over again; it's hard enough to educate yourself. I have a very close knit community of friends and family who know about my dx and support me 100%, and for those who were more work than help, I have limited my contact with them and/or in some cases, cut them out of my life completely. My time and energy is precious to me and so I spend it on and with those who leave me with a sense of well, not those who suck the already limited life from me.

Keep poking around the forum, I think you'll find more support than you could even imagine in the stories of others.

best,
jenji


#11 Henry G

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Posted 18 June 2009 - 02:15 AM

QUOTE (jenji @ Jun 16 2009, 12:24 PM) <{POST_SNAPBACK}>
B/c henry, REM displays theta and beta brainwaves. Simply put, your brain is operating as if it were awake and therefore not getting the proper downtime to repair and rest.

jenji


Why is that so? I mean - we know that N's get too much REM but not enough deep sleep. But why? What causes that malfunction .. like what is the electrochemical glitch .. the steps - the mechanism.

And what is the most effective method (if any) - alternative even .. to Xyrem or hypnotics.

Is there a way to train the brain, trick the brain, induce it to have more deep sleep but less REM?

Like meditation or sticking needles or yoga or receive a high electric shock .......

I dream a lot. TOo much. I enjoy the dreams mostly. But I would rather not dream anymore - if that means I will wake up full of energy and awake.

I am strongly opposed to alternative medicine and treatments.

Why?

Because most of them are false promises , are conducted by charlatans / mediocres and amateurs .. and worse of all - could make things worse, break something else instead, mess up things further.

But recently a friend of mine said he knows of someone that will look into my case. I don't know what she does. I hate people touching me. Hacking into my energy centres and short-circuiting my meridians. Damn it - it's already pretty faulty, please don't introduce extra bugs!

Last time, I've made a concession - I deeply regretted. Some acupuncturist. I thought - ah what the hell. The result was feverish dreams for 2 days, and then hypnagogic spams that have persistent for 3 years and counting.

I will open a concession and see this new asian lady. I think she is into reflexology and neuromuscular "something". He said she does something extra that people think it's reiki - but it's not reiki. I don't like "reiki" sounds very very dodgy.

She doesn't know what Narcolepsy is. Remember many people still don't , including doctors! But said she will research into it - before contacting me.

Apparently - she is very good. She has cured many people's insomnia.

I asked my friend, is she good - like I am ? With search engines say? And he replied - she is a master in her own field. .. So let's see what happens. At present , I am just worried about money - I am so incredibly broke at the moment.

My 3 enemies:

BAD SLEEP
EDS
DEPRESSION

But of all three, the only one I have managed to almost completely subdue is Depression .. thanks to 5-HTP !! Hail be to Thee !!

Now need to conquer the rest. Any of the two will do. But if I had to choose, it would be "Bad Sleep"

#12 sleepless sleeper

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Posted 18 June 2009 - 12:29 PM

hey,

for me, the other sleep meds were used to treat insomnia that can come along w/ N. I took ambien cr. i was having horrible problems sleeping without it, or rather, getting appropriate deep sleep without so much rem. i was getting horrible side effects though, but i believe from all the drugs. i got off all meds for a long time, and during this time i didn't really sleep much. well, i did sleep, but it was weird rem energized non-sleep sleep. finally, one night i was able to sleep and it's been that way since. the only times that i have problems with sleeping for several hours now is when i deviate from a regular sleep hygiene schedule. I still have EDS, i'm still a veggie sometimes, but i'm not a crazed zombie anymore. do u have a sleep schedule? yeah, i know, please don't laugh. But do u at least have one that u try to follow?

#13 Henry G

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Posted 19 June 2009 - 07:46 AM

I have absolutely no control over my sleep patterns for now.

Impossible to tame, to predict ..

#14 WillWork4Latte

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Posted 23 June 2009 - 12:09 PM

QUOTE (music_man @ Jun 15 2009, 03:36 PM) <{POST_SNAPBACK}>
After talking to my doctor and family about N and drugs like Xyrem (they couldn't believe that GHB is prescribed for N), I started to wonder why other sleep meds like Lunesta or Ambien aren't prescribed to assist PWN in getting a good night's sleep.

My assumption is that these exacerbate or do not improve the disordered REM cycles that cause many of the problems in PWN.

Are there any doctor's in the house? Or N experts? Or links to medical studies or research?

Thanks!



My doc recently prescribed Klonopin (Clonazepam) to treat my N-related nighttime sleep issues. Klonopin is in the same family of meds as Valium and Xanax, among others. From what I have read, it is primarily prescribed for seizures and anxiety/panic disorders, although it has also been used to treat REM behavior disorder, RLS, and insomnia (off label).

Due to the fact that I usually experience a significant sleep med hangover that persists for several hours the morning after I take any sleep med- OTC or prescribed- I was slightly hesitant to take my first dose last night. And reading a few Klonopin-related posts and learning about a few others' experiences with it certainly did not help in fueling my confidence. ohmy.gif However, after reflecting on my doc's advice and carefully reading through the complete product information provided at www.rocheusa.com (the studies and side effect tables/figures were especially helpful), I regained confidence and took my first dose at bedtime (as prescribed). Drowsiness was -by far- the most frequently reported side effect according to the data in the product info guide...a therapeutic side effect it would seem, if there is such a thing, for those being treated for nighttime sleep issues.

Fast forward to today...
This morning I was pleasantly surprised. I only remember 1 full awakening last night...an hour or so after I initially went to sleep. Not only did I pop out of bed easier, earlier, and at least slightly more refreshed than my norm this morning, I also quickly noticed that I was not sporting the dreaded sleep-med hangover that I had anticipated. I was not groggy, did not have "medicine head", and I have remained headache free throughout the morning (fingers crossed).

I realize that this positive experience was based only on one initial dose and one night only; however, I have not had a positive experience of this significance with any other sleep meds in the past. Sleep meds almost always intensify my EDS during the following morning/day. I will remain cautiously optimistic (emphasis on cautiously) that this, along with my daytime meds, will give me a much needed boost toward a more "normal" level of energy and functioning during the day. Again, fingers crossed! We'll see... huh.gif

A friendly (but important) reminder for those newly (or un-) diagnosed with N: Please keep in mind that what works for one may be harmful or not helpful to another. Personally, I would not begin any course of treatment with these types of meds without the advice and consent of a trusted doctor...or two...or three.

#15 WillWork4Latte

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Posted 09 July 2009 - 08:36 AM

My doc recently prescribed Klonopin (Clonazepam) to treat my N-related nighttime sleep issues. Klonopin is in the same family of meds as Valium and Xanax, among others. From what I have read, it is primarily prescribed for seizures and anxiety/panic disorders, although it has also been used to treat REM behavior disorder, RLS, and insomnia (off label).

Due to the fact that I usually experience a significant sleep med hangover that persists for several hours the morning after I take any sleep med- OTC or prescribed- I was slightly hesitant to take my first dose last night. And reading a few Klonopin-related posts and learning about a few others' experiences with it certainly did not help in fueling my confidence. Posted Image However, after reflecting on my doc's advice and carefully reading through the complete product information provided at www.rocheusa.com (the studies and side effect tables/figures were especially helpful), I regained confidence and took my first dose at bedtime (as prescribed). Drowsiness was -by far- the most frequently reported side effect according to the data in the product info guide...a therapeutic side effect it would seem, if there is such a thing, for those being treated for nighttime sleep issues.

Fast forward to today...
This morning I was pleasantly surprised. I only remember 1 full awakening last night...an hour or so after I initially went to sleep. Not only did I pop out of bed easier, earlier, and at least slightly more refreshed than my norm this morning, I also quickly noticed that I was not sporting the dreaded sleep-med hangover that I had anticipated. I was not groggy, did not have "medicine head", and I have remained headache free throughout the morning (fingers crossed).

I realize that this positive experience was based only on one initial dose and one night only; however, I have not had a positive experience of this significance with any other sleep meds in the past. Sleep meds almost always intensify my EDS during the following morning/day. I will remain cautiously optimistic (emphasis on cautiously) that this, along with my daytime meds, will give me a much needed boost toward a more "normal" level of energy and functioning during the day. Again, fingers crossed! We'll see... Posted Image

A friendly (but important) reminder for those newly (or un-) diagnosed with N: Please keep in mind that what works for one may be harmful or not helpful to another. Personally, I would not begin any course of treatment with these types of meds without the advice and consent of a trusted doctor...or two...or three.


Just a quick update.... I have been taking Klonopin (Clonazepam), as prescribed, for a little over two weeks now for N-related nighttime sleep issues. I am happy to say that I have not experienced any undesirable side effects (nighttime drowsiness = desirable!) and my sleep quality has improved significantly during this time. I actually wake up feeling at least somewhat refreshed each morning, and that alone is quite refreshing - especially when compared to what had become my norm. So far, so good! (fingers crossed, knocking on wood, etc.)

#16 Maren Harrison

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Posted 27 August 2009 - 04:47 AM

After talking to my doctor and family about N and drugs like Xyrem (they couldn't believe that GHB is prescribed for N), I started to wonder why other sleep meds like Lunesta or Ambien aren't prescribed to assist PWN in getting a good night's sleep.

My assumption is that these exacerbate or do not improve the disordered REM cycles that cause many of the problems in PWN.

Are there any doctor's in the house? Or N experts? Or links to medical studies or research?

Thanks!


Wow... so there is a lot here, but I thought I might start by responding to the original post.

I take Sonata (this is in the same class as the two other drugs that you mentioned) for narcolepsy. This is in addition Provigil during the day. I have tried both Ambien and Lunesta but did not tolerate them well (no the warnings about sleep walking, etc with no memory for the event are not a joke... I was one of those hapless souls). I do not have cataplexy, but I do have issues w/ hypnagogic hallucinations, sleep paralysis and spending WAY TOO MUCH time in REM stage. Sonata was suggested as it would insure that I got at least 4 hours in stages 3-4, though I believe the use is "off label".

The other reason that is was suggested is that tricyclic antidepressants, another favorite treatment for "disturbed REM sleep", I am either allergic to or had issues with some lowering, my already low blood pressure (I hear the low BP is common in narcoleptics???). Apparently mixing Xyrem and the anti-seizure meds I take for basilar migraines are a no no?? so here I am...

The combination of the two seems to be working for me,
I am told the course of treatment is not common, but not unheard of.
I hope that this helps
Maren

#17 Saraiah

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Posted 14 September 2009 - 02:54 PM

My 3 enemies:

BAD SLEEP
EDS
DEPRESSION

But of all three, the only one I have managed to almost completely subdue is Depression .. thanks to 5-HTP !! Hail be to Thee !!


Hi Henry,

Just wondering - what is 5-HTP? I don't think I've heard of that before. Thanks!

Saraiah

#18 Bafflegab

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Posted 16 September 2009 - 02:28 PM

Btw, I believe the cost of Xyrem is so out of control b/c they don't have any competition from other manufactures.

jenji



The reason Jazz Pharmaceuticals has a monopoly on Xyrem is that without it, Xyrem would not be produced except as a street drug for recreational purposes.

This comes directly from Jazz Pharmaceuticals, but the same information can also be found on the FDA Web site for orphan drugs and it is absolutely true: Orphan drugs are given special status by the government due to the rarity of the conditions they treat. Because these diseases are so rare, the market for them is small, making orphan drugs economically undesirable to produce. Government assistance, via tax breaks, subsidy for research, and exclusivity gives companies the incentive to produce these drugs.

Without the benefits granted by the FDA Pharma wouldn't commit a penny to the research and development of a drug for narcolepsy. It took thirteen years
and hundreds of millions of dollars to get sodium oxybate (Xyrem) from the lab to the patient (if I remember correctly, on average it now takes close to twenty years and a billion dollars to get a drug from the lab to the market). Drug research and development is costly and time consuming (even if someone other than Pharma does the research), and Pharma is not in business for altruistic purposes (for what it's worth: consumers in the United States pay an inordinately higher amount than consumers in other countries for the same drugs, but that is our own fault).



#19 Kimberly

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Posted 16 September 2009 - 04:11 PM

Hi Henry,

Just wondering - what is 5-HTP? I don't think I've heard of that before. Thanks!

Saraiah


Hi Saraiah,

There's a great article from Prevention magazine about 5-HTP here: http://www.preventio...ia/0/0/overview

Basically, it's a substance that is used by the human body to make seratonin.