Mental Health About to go to the doctor for narcolepsy (need opinions)

[kingkpin]

So far I'm not diagnosed Narcoleptic, but after looking into it the symptoms truly match up with what's been happening to me my entire life. I've so far self-diagnosed myself as having narcolepsy without cataplexy. A lot of things are starting to make sense, I originally went to my doctor because I thought I had ADHD because many of the symptoms matched up (except for hyperactivity) so they considered me to be inattentive ADD and prescribed me amphetamine. That has helped so much with my constant sleepiness throughout the day. I've realized I've had bouts of sleepy spells almost my entire life but never thought much of it. All of my friends will be hanging out and things will be fine, then I'll start yawning and I can't count how many times I've given the excuse "Oh sorry I'm tired" if I start not thinking straight or start to feel weird and distant due to my sleepiness. It doesn't matter how much I sleep, whether it be 4 hours or 12, some days I'm fine, some I can hardly get out of bed.

The only thing that made me loop into narcolepsy is my constant issues falling asleep, I've become an insomniac due to my phobia of falling asleep now. I've had it since I was about 7, I wake with hallucinations if I don't sleep with a light on, if I don't hear music I'll hear voices as I'm falling asleep and it makes me panic. Almost every night as I'm falling asleep AS SOON as I'm about to go unconscious a loud noise will happen that jolts my entire body, sometimes it's a zap and it feels like my brain is actually being electrocuted, sometimes it's a loud noise like a bang, or I'll hear my name loudly (or just a voice in general). This has severely effected my sleeping schedule and can only sleep if I intoxicate myself to the point of passing out or if I take a lot of benzos (and thats only if I want to really make myself fall asleep) most nights I tough through it until I can sleep.

I've noticed REM starts for me far too early, some nights as I'm falling asleep I'll visually see my dreams with my eyes closed and hear the dialogue of the dream and I have to wake myself forcibly or else I know I'm going to have sleep paralysis. Also I have sleep paralysis on a nightly basis, usually multiple times.

So I have the amphetamines and benzos and it's helped a lot, but I'm looking to taper off benzos because of the dangers that come with them and I need a recommendation on what I should take to help my REM cycle function properly. I know of Xyrem but it's expensive as fuck, I need input before I take something my doctor might give me.

 

[paranoid android]

I would not recommend taking benzos and Amphetamines together because trust me as a fellow insomniac that combo is a fucking nightmare for getting your sleep schedule right. Taking downers before bed to sleep and taking uppers to stay awake during the day is a tried and true way to absolutely fuck any sanity you have left. Taking a hypnotic benzo before you go to sleep such as Temazepam, Nitrazepam or even high dose Valium or a decent Z hypnotic such as Zopiclone is not always a bad thing especially if you have sleep paralysis but the hypnotic effects wear off fairly quickly with benzos and very quickly with Z hypnotics (as in days) and all increasing the dose will do is increase your tolerance and eventually lead to physical dependence if taken everyday. As for Amphetamines even Dextroamphetamine can fuck with sleep quality long after any positive effects have worn off and the same goes for the non Amphetamine stimulant Methylphenidate.

It sounds like you may not be getting any good sleep. You don't have to have narcolepsy to feel constantly tired and fucked up all day that's called not getting enough sleep or enough restorative sleep. Narcolepsy is a different thing altogether really and it doesn't matter how much sleep you get you will still get episodes of Narcolepsy no matter how much sleep you have gotten. Have you actually tried any medications that help you get more restorative sleep thus you feel less tired the next day? Tricyclic anti-depressants are often prescribed for this purpose and i personally found Amitriptyline to be a fantastic sleep aid. Another Tricyclic called Trimipramine is also used for much the same purposes and is one of the very few Anti-depressants that does not mess with REM sleep and actually helps improve sleep patterns. Here is 1 study on Trimipramine and it's effects on sleep.

I also used to get sleep paralysis or as it's affectionately known here "The Old Hag". I too got it so bad at one point that a fear of sleep set in. Although i did get a fear or phobia of sleeping in my own bed atleast for months but that had a very specific cause behind it that modern medicine can't fix . The Old Hag was a rather creepy experience and i still do get it these days from time to time but it can be managed. What meds are you taking now? Some medications such as Alcohol being the worst offender by miles, certain anti-depressants, certain anti-psychotics both Typical and Atypical ones, some sedating anti-histamines and even benzos and Z hypnotics in some people can cause it.

I would strongly suggest mentioning everything to your doctor and preferably one that knows how to treat sleep disorders. Xyrem aka Sodium oxybate aka GHB is only used to treat cataplexy associated with Narcolepsy though it can be used to treat Narcolepsy in general you can bet they are going to try Methylphenidate, Modafinil and all the available Amphetamines in your country first. So i wouldn't go in just asking a doctor for GHB if i where you

 

[silverwheel]

It sounds like you may not be getting any good sleep. You don't have to have narcolepsy to feel constantly tired and fucked up all day that's called not getting enough sleep or enough restorative sleep. Narcolepsy is a different thing altogether really and it doesn't matter how much sleep you get you will still get episodes of Narcolepsy no matter how much sleep you have gotten. Have you actually tried any medications that help you get more restorative sleep thus you feel less tired the next day? Tricyclic anti-depressants are often prescribed for this purpose and i personally found Amitriptyline to be a fantastic sleep aid. Another Tricyclic called Trimipramine is also used for much the same purposes and is one of the very few Anti-depressants that does not mess with REM sleep and actually helps improve sleep patterns. Here is 1 study on Trimipramine and it's effects on sleep.

I would second this, and add that I have personally had great experience with Remeron (mirtazapine) for sleep. It's a tetracyclic antidepressant that has worked quite well for me, and I was suffering from severe fibromyalgia-related sleep disturbances for a long time. I wouldn't wake up, but I would often scream out in pain in the night and feel completely fried during the day. My dreams were also not good - not nightmares, necessarily, but anxious and unpleasant. Once I started on Remeron, the quality of my sleep and my dreams improved immediately, and it doesn't leave me groggy in the morning (aside from the first couple of days getting used to it).

 

[Kittycat5]

Xyrem is indicated for excessive daytime sleepiness associated with narcolepsy, not just cataplexy. But good luck getting it prescribed. PA is correct in saying all other options would be tried first. And self diagnosis is almost never correct.

 

[paranoid android]

Xyrem is indicated for excessive daytime sleepiness associated with narcolepsy, not just cataplexy. But good luck getting it prescribed. PA is correct in saying all other options would be tried first. And self diagnosis is almost never correct.

Yup seems your right. My bad . Either way this is one medication they are not giving out easy. Here in Canada doctors have to be familiar with it in order to even prescribe it so even though it's only Schedule G CDSA3 here (the same schedule Methylphenidate is in) it's going to be harder to get prescribed then most opiates because of that alone.

 

[Kittycat5]

Even harder here in US to get. It is only schedule III, lower than methylphenidate but has an extensive risk management policy in place and one pharmacy in the whole country is authorized to distribute it.

 

[paranoid android]

Even harder here in US to get. It is only schedule III, lower than methylphenidate but has an extensive risk management policy in place and one pharmacy in the whole country is authorized to distribute it.

Jesus fucking christ . That's abit unfair to people that actually need the stuff to say the least. Not to mention Xyrem could be used for more then Narcolepsy if used right and i certainly don't think it's anymore dangerous then the great legal drug alcohol in the long run that's for sure. Atleast GHB doesn't cook your liver and just generally fuck your brain and body beyond repair like chronic alcohol abuse does. I know so many guys my age here who have fucked themselves completely due to chronic alcoholism that it's not even funny anymore. People talk about the damage Crack/Coke and opiates are doing to young people here that's nothing compared to what alcohol is doing to people here.

 

[Burnt Offerings]

Is GHB so strongly controlled because the therapeutic dose is so close to the "go into a coma dose"?

I actually don't know much about GHB and have never tried it, but I've heard that it has a steep dose-response curve.

 

[Kittycat5]

I imagine its supposed narrow therapeutic index is a factor, but it is probably so tightly controlled because it was a drug of abuse, and one with bad publicity (think date rape drug as an example) long before it was approved a medical use.

 

[Burnt Offerings]

So it was a drug of abuse that later on became utilized for a medical purpose? Weird. Usually it seems like it happens the other way around.

 

[Kittycat5]

I guess I was speaking of the history of GHB of the past 25 years or so. It was synthed in the late 1800's and was used in anaesthesia and other treaments in the 1960s and 70s but was not well known.

In the current iteration of GHB use, it was sold OTC as a supplement for bodybuilders and gained popularity in the 90s as a drug you can abuse. Somewhere are 2000 it was removed from shelves by FDA but still remained relatively popular to use. It was in this time period that I was referring to, not its early medical use.