I have narcolepsy - AnabolicMinds.com

I have narcolepsy

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    I have narcolepsy


    Just got diagnosed with narcolepsy. It's crazy because now a lot of things come into perspective. Why did I struggle in school? Why has it always been so hard to concenrate. Why did I always fall asleep in class, Why was it so hard to get up in the mornings all these years? Why am I SO FREAKING tired all the time?! I was born with this ignorance to quitting. I have tremendous drive and will and I think that's what has got me through. Also being younger I was able to deal with the sleep deprivation better but in the last couple years as I entered my late 20's I knew something was right. Work was becoming very difficult. Dealing with people was becoming very difficult. It was like I was falling apart. I have been getting tests for years now. Around 5 years. Becoming nearly a hypochondriac thinking I have this and that and nothing comes up. Not having insurance here and there post poned me getting the care I needed too. Doctors thought I just had depression. Pushing zoloft on me like no other. A ssri could of made me suicidal with it's CNS depressive effects. I'm so glad I never went that route! Thankfully, I decided I'm going to talk to a sleep Dr. It was originally for insomnia cause I have bouts of that too. Tired yet can't sleep. So i've had two sleep studies since january and it's been confirmed. Basically my sleep cycle is messed up. My brain stays active most of the night so that's why I'm always tired. I seem to stay in REM sleep for the majority of the night and skip the normal phases. So I wake up never refreshed and have been sleep deprived for most of my life. Treatment is a drug called provigil. Take one or 2 a day. It's basically designed to keep you awake. Not a caffeine/ephedra/yohimbe type feeling. Then once it's effects wear off you go back to normal. No crash feeling. There's no cure but atleast I have answers to a lot of my life long questions. Hopefully the medication helps me get by. Anyone else have narcolepsy on here?
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?

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    This may be a really stupid question considering all the time you've went through this. But evidently regular sleep aids such as melatonin, valerian root, 5-htp, etc.. didn't help?
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    I was gonna post a bit about supplements but I didn't wanna make my first post too long. Melatonin, Any gaba acting supplement like valerian root and so on only made me even more groggy and tired the next day. Too depressing, although there were times where they made me feel like i slept through the night. I have never woken up refreshed though. Serotonin acting supplements like 5-htp was probably the best. I didn't feel more tired the next day however long term use led to depression. You'd think it be the opposite right? It was because of it's depressive effects on my nervous system which was already too low. Although supplements and drugs can have a effect on my sleep cycle, there's nothing out there that will correct it and make be go through the stages normally.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    For my own curiosity. How does one get diagnosed with having legit narcolepsy. I mean a lot of people have trouble sleeping, but I'm just curious what the tests etc.. are that you need to go through before the doctors will be able to tell you have actual narcolepsy?
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    Two tests are used to diagnose narcolepsy. These tests are a polysomnogram (PSG) and a multiple sleep latency test (MSLT).
    Certain things show up on the tests that would not in a normal individual. Compare it to a person who has epilepsy. Certain things show up on a EEG that are consistant with a seizure disorder vs having a normal EEG.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    Are you on provigil now?

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    Damn man, sorry to hear this but perhaps knowing now will help you tackle the issues in the future.

    My friends used to joke to tell me I'm narcoleptic... I thought it was just because class was boring and I wanted to sleep.
    But sometimes I think I might be. I frequently find myself tired at various points in the day (I fell asleep at work tonight). Melatonin does nothing at 5mg. Red wine doesnt help either. Im on GH boosters and they improve the quality of my sleep but I frequently wake up (sometimes from hunger). A lot of times Im not feeling tired when I go to bed - with that, often I can't fall asleep because my mind won't settle down. I'm immune to caffeine, even in massive doses.

    I do get 6.5 hrs worth, maybe not straight through but I do. I also work night shift so I'm going to bed at like 8AM till 2:30PM. My room is pitch black and a constant 70 F. I used to always fall asleep in class, sometimes at work. I nap during the day. I dunno, maybe it's just my work schedule... I should see a doctor.
    By believing passionately in something that still does not exist, we create it. The nonexistent is whatever we have not sufficiently desired.
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    Yes I'm on provigil. My dr reccomended 200mg upon waking up and then 200mg at noon but I decided to start out with 200mg in the morning and see what happens. I was on 200mg once in the morning for 4 days. I felt more alert, but I was having extreme agitation and aggressive feelings. I felt like I was looking for a fight. Waiting for someone to say something that just irritated me a little and go off on them. It was great for working out. I haven't worked out that hard in since I could remember. It was almost like I had to run a hour to get off the aggression though. So I didn't feel this was safe so I cut the pill in half and I'm down to 100mg in the morning once. Agitation is down but the alertness is not as effective. I'm probably going to try another half pill (100mg) at noon soon. Just to see if breaking up the dose reduces the effect, instead of getting a surge of the drug all at once.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    Quote Originally Posted by OrganicShadow View Post
    Damn man, sorry to hear this but perhaps knowing now will help you tackle the issues in the future.

    My friends used to joke to tell me I'm narcoleptic... I thought it was just because class was boring and I wanted to sleep.
    But sometimes I think I might be. I frequently find myself tired at various points in the day (I fell asleep at work tonight). Melatonin does nothing at 5mg. Red wine doesnt help either. Im on GH boosters and they improve the quality of my sleep but I frequently wake up (sometimes from hunger). A lot of times Im not feeling tired when I go to bed - with that, often I can't fall asleep because my mind won't settle down. I'm immune to caffeine, even in massive doses.

    I do get 6.5 hrs worth, maybe not straight through but I do. I also work night shift so I'm going to bed at like 8AM till 2:30PM. My room is pitch black and a constant 70 F. I used to always fall asleep in class, sometimes at work. I nap during the day. I dunno, maybe it's just my work schedule... I should see a doctor.
    I've messed with supplements for so many years to get better sleep and while some helped me sleep better I never woke up fully refreshed no matter what. The closest I came was from 5-htp or trazodone but 5-htp started to make me really depressed. You would think the opposite because it increases serotonin but you have to look at it as a CNS depressant. So if my CNS is already low anything else that lowers would be a bad idea. A ssri would probably make me suicidal. I'm so glad I never caved into taking one. For years doctors were trying to get me to take one saying I was just depressed. Well I was depressed but it was because I was sleep deprived! I have suffered from many bouts of insomnia also. Currently I haven't had it in awhile. It's strange because things are always different. My body constantly changes. Narcolepsy is proposed to be a auto-immune disease as well as a neurological disorder. Caffeine has a weird effect on me and it's always hit and miss. Either It will make me feel a little more awake or just jittery and miserable. Most of the time it's jittery and miserable. Never does it put me in that focused/ alert good feeling that the normal caffeine junky seems to feel from it.

    Your work schedule could definetely be contributing to your symptoms but but if you have history of fatigue I would definetely go to a sleep dr. Request the studies I mentioned. The sleep study sucks but just knowing what's wrong with you can change your outlook on life. My life has really changed knowing I have this. It gives me a peace of mind in a way. I actually have more confidence now knowing that I was able to accomplish what I did all while I had this condition that I didn't know about. I too fell asleep in classes growing up and always have felt bored. I missed so many days of school. I remember I missed 101 days of homeroom one year in high school. I was almost always late but since I had a note from my mom somehow they let me go.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    Thanks for the insight. I'll look into it. Best of luck to you and ill keep you in my prayers. It sounds that now knowing where the problem lies you'll be able to manage it better.
    By believing passionately in something that still does not exist, we create it. The nonexistent is whatever we have not sufficiently desired.
    Franz Kafka
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    Nothing to offer other than "GOOD LUCK PHIL"
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    Quote Originally Posted by OrganicShadow View Post
    Thanks for the insight. I'll look into it. Best of luck to you and ill keep you in my prayers. It sounds that now knowing where the problem lies you'll be able to manage it better.
    Thankyou, I wish and pray the best for you as well. With this condition it definetely seems that time is against you. The older you get the harder it will be to manage it so the sooner you know the better. Try not to wait until you life is out of control. That's one regret I had is I waited too long to get tested and relied on my mental strength to get through. Eventually your mental strength will run out.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    Took 200mg in the morning today because the 100mg just wasn't keeping me alert enough. I'm starting to get fed up with the side effects I'm having from it. Today my mood was just aweful. I had a cloud over my head until late afternoon. Lathargic as anything and very indicisive. I've been getting really bad irritability and feeling aweful aggressive at times also. I emailed my Dr. and gonna wait to see what she says. In the mean time I ordered lucidrol from AMS last week. A non-stim cognitive enhancer. I'm going to try it in place of provigil tommorrow and see how things go. I don't wanna feel like I did again today.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    Are you a low or high carb guy? The reason I ask is at the end fo the day, provigil is still a CNS stim, just a different variety/MOA is different.

    When I take stims whn low on carbs, I get REALLY pissy. The opposite is truse when I have some carbs in me. Just trying to offer some help.

    Phil - read this as it might give you a different perspective on purported uses of Provigil than what the docs conveyed
    http://www.modafinil.com/fda/index.html
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    Moderate carbs. High through out the day and then low in the evening. I know what your saying, If I have caffeine or like stimulant on a empty stomach or low carb my energy crashes and so does my mood. Provigil however is a completely different feeling. Nothing like your typical stimulant. I notice a dopamine release for sure. Also Norepinephrine and epinephrine.This effect is similiar to if I take too much DLPA or tyrosine but in a odd way different. I don't feel anxious as much. Which is a surprise. Just extremely irritable and other cognitive impairments. I almost felt like I shouldn't be driving cause my head just didn't feel right. Odd feelings. I've also been very hot lately all day. I would contribute that to the higher norepinephrine and epinephrine in my system. With caffeine and like stims I will get very anxious and irritable most of the time.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    Do you ever feel sensitive to certain carbs? Like do you crash from sugars or white starch like i do?
    By believing passionately in something that still does not exist, we create it. The nonexistent is whatever we have not sufficiently desired.
    Franz Kafka
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    Yea, I do have hypoglycemia. I pretty much have to eliminate enriched products (unless I have fiber with it) and sugar. I can get away with honey in my oatmeal but thats really the major source of sugar I use. Fruit I have to be careful with even. The higher fiber content the better. I normally eat one fruit a day though. Just a banana after a workout. Bananas will make me tired on a empty stomach. I use stevia for drinks and hot beverages. ON brand organic stevia powder is awesome. When I was a teen, around 16 is when I started noticing the problems with sugar. I was lathargic all the time and shaky at times. Got a glucose tolerance test and that's when I found out. Started to change up my diet and felt much better. Still once I developed the condition I was never the same. I remember eating marshmellows and high sugar stuff as a kid and getting a sugar high and lots of energy but now all that will do is make me crash hard.
    ôLord, whom shall we go away to? You have sayings of everlasting life"- John 6:68

    WHAT has science offered?
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    Same. OK, now i gotta get myself checked out.
    By believing passionately in something that still does not exist, we create it. The nonexistent is whatever we have not sufficiently desired.
    Franz Kafka
  

  
 

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