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#1 LuisPuerta

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Posted 09 October 2012 - 04:39 PM

So this is my first post in this forum but i've been a long time reader. I felt like if i put my situation down into words maybe others can relate/empathize or help. I apologize if this is a long read! I never really encountered problems with sleeping until college when i was 21 and began to suffer chronic fatigue throughout the day. Focus, drive, motivation just went completely at the window. It was a real struggle managing through that time period because it felt like it wasnt my choice to be those things. I fought like hell with it, exercised, ate healthy and moved on. I didn't know at the time that i had Narcolepsy/Sleep Apnea.

One thing that was prevalent throughout this time period and still goes on currently was nightmares (I still have them even with the CPAP machine). Holy mother of god, i'm not talking average run of the mill "that was scary whew" nightmares; i'm talking sleep paralysis waking up in the midle of the night feeling like there was some sort of demon trying to rip my soul out of my body. Or some kind of extremely vivid and terrfying end of the world event. Oftentimes im perfectly aware in my dreams which makes it even worse. To this day i havent found anything to manage this. Going to sleep scares the crap out of me. Even with a perfectly happy and stress free day its prevalent. This leads to me waking up non stop throughout the night so i really only ever end up getting 5ish hours of sleep.

Once i enlisted in the military, after a ton of fighting for a Sleep Study (I almost got kicked out for getting in a shouting match with a ranking superior over my rights to medical treatment; they were refusing to do the sleep study and attributed it to shift changes -_-.) I finally got diagnosed with Sleep Apnea and Narcolepsy. I was prescribed Provigil. It kind of has a meh effect for me. I'm a little more awake but i still have zero focus/drive and my heart feels like its going to tear out of my chest. Lately i've also started to develop extreme anxiety over absolutely nothing. I just sit there tweaking for no reason. Or if it's not that its the desire to do nothing at all. I just sit and have this immense void (thats the best description for it :/) in my chest and cant find the care for anything. To me it feels like depression, but that word really fails to describe just how deep and intense the emptiness is. I know this sounds dramatic, but it's pretty accurate. This is also on good days. On bad days (ones where i dont exercise extensively and take the provigil) i cant move and lay in bed all day feeling drained and wracked with pain. I hate feeling this way. I want to love and enjoy life, not watch it pass me by. I'm only 24 and i take care of myself the best i can.

My question to you all is this. What are your opinions on treatment if the Provigil isnt working? I would really like to not mix and match different drugs based on all the symptoms; the emptiness, anxiety, and extreme lack of focus. Is there one that can generally help with all? I know there isnt a magic cure all, but if it can even mildly help i'd like to know. I've done everything i can to remove stressors from my life and live a healthy lifestyle. Medication seems like a foregone conclusion. I really appreciate you guys taking the time to read this and offer advice. Best of luck.

#2 DeathRabbit

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Posted 09 October 2012 - 04:58 PM

You could try for a more classic style stimulant or you could go for Nuvigil. And of course, there's Xyrem to help you sleep more deeply at night. I know what you mean about emotions and lack thereof. I think the sleep deprivation just builds up over the years, making it impossible to care that much about anything. I would also get your testoserone level checked. Narcolepsy knocks your T straight into the dirt. Low T causes that sort emotional blankness and makes the fogginess worse. I'm on self-administered injections of T, so you dont even have to go to the doc to get the shot each time, only when you run out of medicine.

#3 LuisPuerta

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Posted 09 October 2012 - 05:05 PM

You could try for a more classic style stimulant or you could go for Nuvigil. And of course, there's Xyrem to help you sleep more deeply at night. I know what you mean about emotions and lack thereof. I think the sleep deprivation just builds up over the years, making it impossible to care that much about anything. I would also get your testoserone level checked. Narcolepsy knocks your T straight into the dirt. Low T causes that sort emotional blankness and makes the fogginess worse. I'm on self-administered injections of T, so you dont even have to go to the doc to get the shot each time, only when you run out of medicine.


I honestly didn't think of testosterone levels, thanks for the advice! I'll talk to my doctor about it. Emotional blankness is a good way to put, the problem now is less with the fatigue and more with that.

#4 Megssosleepy

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Posted 10 October 2012 - 12:08 PM

So this is my first post in this forum but i've been a long time reader. I felt like if i put my situation down into words maybe others can relate/empathize or help. I apologize if this is a long read! I never really encountered problems with sleeping until college when i was 21 and began to suffer chronic fatigue throughout the day. Focus, drive, motivation just went completely at the window. It was a real struggle managing through that time period because it felt like it wasnt my choice to be those things. I fought like hell with it, exercised, ate healthy and moved on. I didn't know at the time that i had Narcolepsy/Sleep Apnea.

One thing that was prevalent throughout this time period and still goes on currently was nightmares (I still have them even with the CPAP machine). Holy mother of god, i'm not talking average run of the mill "that was scary whew" nightmares; i'm talking sleep paralysis waking up in the midle of the night feeling like there was some sort of demon trying to rip my soul out of my body. Or some kind of extremely vivid and terrfying end of the world event. Oftentimes im perfectly aware in my dreams which makes it even worse. To this day i havent found anything to manage this. Going to sleep scares the crap out of me. Even with a perfectly happy and stress free day its prevalent. This leads to me waking up non stop throughout the night so i really only ever end up getting 5ish hours of sleep.

Once i enlisted in the military, after a ton of fighting for a Sleep Study (I almost got kicked out for getting in a shouting match with a ranking superior over my rights to medical treatment; they were refusing to do the sleep study and attributed it to shift changes -_-.) I finally got diagnosed with Sleep Apnea and Narcolepsy. I was prescribed Provigil. It kind of has a meh effect for me. I'm a little more awake but i still have zero focus/drive and my heart feels like its going to tear out of my chest. Lately i've also started to develop extreme anxiety over absolutely nothing. I just sit there tweaking for no reason. Or if it's not that its the desire to do nothing at all. I just sit and have this immense void (thats the best description for it :/) in my chest and cant find the care for anything. To me it feels like depression, but that word really fails to describe just how deep and intense the emptiness is. I know this sounds dramatic, but it's pretty accurate. This is also on good days. On bad days (ones where i dont exercise extensively and take the provigil) i cant move and lay in bed all day feeling drained and wracked with pain. I hate feeling this way. I want to love and enjoy life, not watch it pass me by. I'm only 24 and i take care of myself the best i can.

My question to you all is this. What are your opinions on treatment if the Provigil isnt working? I would really like to not mix and match different drugs based on all the symptoms; the emptiness, anxiety, and extreme lack of focus. Is there one that can generally help with all? I know there isnt a magic cure all, but if it can even mildly help i'd like to know. I've done everything i can to remove stressors from my life and live a healthy lifestyle. Medication seems like a foregone conclusion. I really appreciate you guys taking the time to read this and offer advice. Best of luck.


I feel as if you were telling part of my story... besides the military! My SP/HH brought demons into my room attempting to drag me to hell where satin would try to force me to have his child! The end of the world dreams where usually torandos ripping through my walls and or tidal waves... whoever claimed we dream in black and white was a nut! I see colors that Ive never seen in real like. My bed would shake and I would hear music playing all the time... what made it go away?

No naps on the couch!
White noise and Radiohead/Dredge playing Always steady white noise loud!
No sleeping on your back, train yourself to never ever sleep on your back!
Stress makes them more frequent/ stress and worry
Don't want scary movies/shows anything that can upset you stay away from! Ive been watching the walking dead... bad idea...
Remind yourself as you fall asleep that its not real/ force yourself into a silly dream (make up a random story and roll with it)
If you can control the "world end" dreams learn how to fly! That helped me with those and I thought flying was so fun it would wake me!
and lastly
Xyrem... my dreams have been bizarre and long and vivid but even the scary dream where the world was ending and I was living in this protected store/warehouse (almost like Castco or something) Bad things kept happening but before I woke I had fallin for some guy in the dream lol and he wanted to protect me!
Eventually once you are on the top dose for awhile rem sleep will decrease dramatically!

My main suggestion is to try other meds... try Xyrem... right now I am finally on 4.5x2 and am hoping to try to take a healthier approach to my N... Its going to be a process but I am finally starting to get over my depression (Xyrem!!) and I really feel like I can fight with just being healthy and taking the Xyrem... only time will tell but I have hope is what I am trying to say... Ive never felt hopeful and now I do!

Good luck!

#5 MINItron

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Posted 14 October 2012 - 11:12 AM

I have been in the military for 16 years, and have been dealing with the EDS and fogginess for at least 10 years. I was blown off by my flight surgeons many times before I finally brought it up to my current primary care manager, and the first words out of his mouth were "You need a sleep study my friend." I wasn't until after I saw the sleep specialist that finally realized that I was probably having cataplexy when I was dealing with post traumatic stress after a deployment to Iraq several years ago (thankfully I haven't had one in at least 3 years).

I almost always have vivid dreams at night. It is not unusual for them to be VERY disturbing, but for some reason they don't scare me. I've never figured out why. I can be in the middle of a terrible storm, or surrounded by monsters, and it all seems perfectly normal and sane at the time. I can't remember the last time that I woke up because of a nightmare scared me. Usually my dreams wake me up because I get the urge to do something in them.

This is very different from what most people describe. When my dreams turn scary it's almost like there is a disclaimer that goes off in my head that says, "this is a dream". Now if I could just get those when I am dreaming about work or real life. Sometimes I think I have done things because I have dreamed it, but in reality I still need to do it.

#6 Megssosleepy

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Posted 15 October 2012 - 03:05 PM

I had my very first non-scary SP/NN yesterday!

I was sleeping in and my pup kept coming into my room to check on me... after awhile he was outside playing and I was still seeing him visiting me... then he started talking and I realized what was going on... Peeled myself out of it and got up as soon as I could before it turned bad! (didn't want my pup to turn into a demon and drag me to the underworld :huh: )

#7 LuisPuerta

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Posted 21 October 2012 - 08:38 PM

I had my very first non-scary SP/NN yesterday!

I was sleeping in and my pup kept coming into my room to check on me... after awhile he was outside playing and I was still seeing him visiting me... then he started talking and I realized what was going on... Peeled myself out of it and got up as soon as I could before it turned bad! (didn't want my pup to turn into a demon and drag me to the underworld :huh: )


Sorry for the long reply! I know EXACTLY what your talking about. At one point it got so bad i thought i was haunted. I'm not that superstitious but seriously they were just on another level of freaking me out. Its crazy you mention the couch thing because that is like a death trap for me, almost guaranteed sleep paralysis + demon trying to tear my soul out. Sounds so dramatic and crazy but it honestly feels like that. The only thing ive found to help is leaving the lights on -_-. i'm a grown man but if i turn the lights out and have an episode it is very much No Bueno...

#8 Megssosleepy

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Posted 23 October 2012 - 01:13 PM

Sorry for the long reply! I know EXACTLY what your talking about. At one point it got so bad i thought i was haunted. I'm not that superstitious but seriously they were just on another level of freaking me out. Its crazy you mention the couch thing because that is like a death trap for me, almost guaranteed sleep paralysis + demon trying to tear my soul out. Sounds so dramatic and crazy but it honestly feels like that. The only thing ive found to help is leaving the lights on -_-. i'm a grown man but if i turn the lights out and have an episode it is very much No Bueno...


At one point during my life they got really bad, I would wake have a massive panic attack and then throw up! I Too thought it was real, I thought I had done something that opened myself up to see demons, and made the mistake of telling a "super religious person" about it... well we had to do all these prayers and Gave me a list of things not to do (including reading my horoscope lol)

Ive woken up with my own hands around my neck trying to pry their gnarly fingers away! I am so thankful I know that it is not real, if someone could be scared to death it would be me!! Nothing like Satin wanting you to have his heir!

I heard a lot of people see spiders and shadows... Ive seen darkness but they are normally very real demons! I feel your pain!

#9 drago

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Posted 27 October 2012 - 03:33 AM

One thing that was prevalent throughout this time period and still goes on currently was nightmares (I still have them even with the CPAP machine). Holy mother of god, i'm not talking average run of the mill "that was scary whew" nightmares; i'm talking sleep paralysis waking up in the midle of the night feeling like there was some sort of demon trying to rip my soul out of my body. Or some kind of extremely vivid and terrfying end of the world event. Oftentimes im perfectly aware in my dreams which makes it even worse. To this day i havent found anything to manage this. Going to sleep scares the crap out of me. Even with a perfectly happy and stress free day its prevalent. This leads to me waking up non stop throughout the night so i really only ever end up getting 5ish hours of sleep.


I can commiserate on this. I've had sleep paralysis all my life, and I didn't know what it was until age 15 or 16. Even now, it's painful (if I see something, I smell/taste/feel it... i.e. I see lion mauling my leg, I feel it mauling my leg). Unfortunately, I have no good answers. The vivid, painful, crazy nightmares are easier, because I can think things like, "What is a lion doing in my bedroom? If it's on the loose, shouldn't someone be chasing it?" And that helps. But when it's just the sensation of being watched, when I feel like there is something (and it is SOMETHING) lurking... that can be impossible to get over. Nothing seems to help this -- especially now that I live alone.

I was prescribed Provigil. It kind of has a meh effect for me. I'm a little more awake but i still have zero focus/drive and my heart feels like its going to tear out of my chest. Lately i've also started to develop extreme anxiety over absolutely nothing. I just sit there tweaking for no reason.



I had the Zombified effect on Provigil, too. Eventually I was switched to adderall -- the provigil can give some people bouts of disorientation after a month or so of being on it, which is what happened to me. SO that's how I got switched. But Provigil really didn't help me stay alert at all. It made me feel absent -- that's the only word I can use for it.

Anxiety can occur with stimulants. If you're having side effects from the Provigil and it's NOT helping you stay alert/focused/awake, ask to be switched to a different stimulant.

Or if it's not that its the desire to do nothing at all. I just sit and have this immense void (thats the best description for it :/) in my chest and cant find the care for anything. To me it feels like depression, but that word really fails to describe just how deep and intense the emptiness is. I know this sounds dramatic, but it's pretty accurate. This is also on good days. On bad days (ones where i dont exercise extensively and take the provigil) i cant move and lay in bed all day feeling drained and wracked with pain. I hate feeling this way. I want to love and enjoy life, not watch it pass me by. I'm only 24 and i take care of myself the best i can.


A lot of what you're describing can be attributed to sleep deprivation and side effects from Provigil.

My question to you all is this. What are your opinions on treatment if the Provigil isnt working? I would really like to not mix and match different drugs based on all the symptoms; the emptiness, anxiety, and extreme lack of focus. Is there one that can generally help with all? I know there isnt a magic cure all, but if it can even mildly help i'd like to know. I've done everything i can to remove stressors from my life and live a healthy lifestyle. Medication seems like a foregone conclusion. I really appreciate you guys taking the time to read this and offer advice. Best of luck.


Do yourself a favor: DON'T GET TREATED FOR ANXIETY until you've found a stimulant that keeps you awake and alert. Anxiety is likely a side effect from Provigil, and if you're switched to Ritalin or Adderall, that may go away, and it will save you a medication.

I recommend you ask to be switched off the provigil for something else. My doctor wanted to keep upping the dosage on my provigil, but between the side effects and me nagging her she agreed to switch me to adderall to try. It took about a week for me to adjust, but it has been highly successful. I take 25mg /day and have been for the last three years with little to no side effects. I know some people benefit from ritalin instead of Provigil.

drago