Our partner

Narcolepsy/cataplexy

Narcolepsy message board, open discussion, and online support group.

Narcolepsy/cataplexy

Postby gingerbaby92 » Wed Jun 20, 2012 3:10 am

I have suffered from sleep disroders my whole life. When I was 10 years old I had a type of sleep apnea called Hypopnea. Every night would result in me seeing spiders and snakes and getting out of bed screaming and running away out of terror. After months of this happening I went to a sleep Dr and had a sleeo study done, they informed me of what I had and that my tonsils were blocking my airways. After getting my tonsils removed my sleep problems got a lot better, although I always talk in my sleep. When I started getting older I began seeing things, I would be asleep with my eyes open and see the ceiling falling on me, babies falling from curtains, and sometimes people in my room. Not only would I see these things happening but I would react to them, which always resulted in me running out of my room sometimes falling or not seeing the things around me and running into things. These hallucinations have become a nightly thing and are very scary. Along with this I had suffered from what I always thought were panic attacks. When I was in the car one night my hands got really cold and starting shaking and all of a sudden I couldn't hold my head up. It felt like I lost control of my body and couldn't hold anything up. This feeling went away and within a few minutes came back. I got out of the car and could barely walk I just couldn't control my body. When I loose control of my body I will start shaking uncontrollably. To someone else it looks like I'm having a seizure. I was hospitilized for this because noone knew what was going on. Noone found anything wrong with me, not in brain or heart scans. After all of this I still do have them I can feel the cold coming on and If im standing up someone has to catch me because my legs won't work. Im awake the whole time and feel absolutely fine. I never thought narcolepsy could be a possibility but after seeing a dr and scheduling a sleep study he thinks it may be a possibility. I never though it was possible because I was very uninformed on what it was, I always heard about the stories were people fall alseep constantly mid sentence. I don't fall asleep mid sentence I'm just tired all the time. I'm 19 years old and thought that it was natural to always be tired and to be able to sleep all day. I hate it because i can easily sleep until 2 in the afternoon. I don't want to sleep my life away. I'm schedule for a sleep study in a month and a half but I'm just really unsure of all of this. When I talked to the Dr I didn;t really get to talk about a lot of this. I just wonder if it really is a possibility that I could have both cataplexy and narcolepsy or if it is maybe something completely different. Thanks
gingerbaby92
Consumer 0
Consumer 0
 
Posts: 1
Joined: Wed Jun 20, 2012 2:58 am
Local time: Sat Mar 06, 2021 12:20 am
Blog: View Blog (0)


ADVERTISEMENT

Re: Narcolepsy/cataplexy

Postby Misanthropic » Wed Jul 25, 2012 8:37 am

Hello.

I've had N my whole life, but was formally tested and diagnosed only a couple months ago.

Funny about the tonsils thing. 12 years ago I got my adenoids and tonsils removed, my adenoids were too large and causing me to speak with a very nasal tone. [Adenoids are a type of tonsil, but in the nose.] Though, it wasn't linked to the narcolepsy.

My mum brought me to a doctor 14 years ago because I had slept for 26 hours straight. The doctor told her I had chronic sleepiness and to give me things to do with my hands to keep me busy until bed time. Nothing was ever done by the doctor, no tests or anything. So, it continued.

I've hallucinated my whole life, same as my family. I was brought up to believe that I had 6th sense and was being haunted.

I'd also be in bed and get this really, really eerie feeling that someone or something was standing behind me, or was about to come in my room. Most times, I could never turn around. Sometimes, I felt like someone was above me and I was unable to scream. I also wake up thinking I have had conversations with my bedmate or that I had gotten up and done something.

When I was a teenager, I was really nervous. That's when my anxiety started. I also started noticing I had things I called "dizzy spells" where I would feel really light headed and fall to the floor. It then progressed to seizures whenever I was really anxious or angry. I got tested twice for epilepsy but kept coming back negative. One time I had one and was taken to the hospital where I was told that it was NES [non-epileptic seizures] caused by extreme anxiety. So I went with that. I then learned when to recognize the specific weakness that I called "feeling seizure-ish" and give a heads up to people, but usually it was weakness everywhere with no collapsing.

Since always, my friends pointed out that it was very strange of me to report to them of dreaming after have only been sleeping for 5 minutes or less. It happens in even seconds. I always thought it was normal to start dream rapidly.

I never felt rested ever, no matter how much or little or routine or not routine my sleep was. I tried every combination to no avail.

I recently moved a couple of months ago, and suddenly it got much worse. I could barely stay awake at work and while driving. It was getting really, really bad. I was all over the highway all the time, and the urge to pull over to sleep was incredible. The weakness was worse, my memory WAY worse [it was a new day everyday, could not remember what happened the day before,] and the hallucinations and vibes more frequent.

Before I moved, I was with my best friend and we saw these balloons, but I thought they were UFO's. So I started researching UFO's and alien abduction. When I was a teen, I was very sure that I was abducted by aliens once. Well, reading about scientific explanations to abduction stories, I came across a few articles that said in almost every case, sleep paralysis was the cause of these "experiences."

So I researched sleep paralysis, and it said that if you experience sleep paralysis often, you may have narcolepsy. So I researched narcolepsy and everything it includes; it described my whole life perfectly.

So, I brought up the possibility of this to my physician and he set up an appointment with a sleep doctor at a sleep lab.

    I filled out an Epworth Sleepiness Scale for a total of 18 out of 24 [very high]
    Filled out a sleep habit/history form
    Took an Polysomnogram [PSG]
    Took a Multiple-Sleep Latency Test [MSLT]

It came back with the diagnosis of Narcolepsy with Cataplexy, not due to any other disorders and treatment should be as such.

I take 250mg of Nuvigil. I take it an hour before leaving to work, it keeps me up but I still have some tiredness. Sometimes I stay up for 2 or 3 days straight, sometimes it wears off after 8 hours and I sleep all day. But the main thing is, it keeps me up for work and driving to work.

I still have hallucinations and cataplexy. I'm a lucky cataplectic, my weakness is usually in my wrists, so I drop things a lot or can't pick things up. I consider it "bad" if my knees feel weak and I feel faint, that makes me afraid of a convulsion coming.

Celexa is used to alleviate cataplexy.
Xyrem is can also be used. [Also used to treat hallucinations at times.]
Currently, I am not taking any medications for cataplexy or hallucinations.

The funny thing is, narcoleptics can often suffer from insomnia ironic, yes.
"A Wolf In Sheep's Clothing. Hour By Hour The Spitting Image Of A Normal Man."
So how do you portray the sentiment? The ruse is brought, the truth is bent; and much to our dismay, they're ignorant; the more that we make up, the more it fits.
Misanthropic
Consumer 3
Consumer 3
 
Posts: 74
Joined: Tue Jul 24, 2012 9:58 am
Local time: Sat Mar 06, 2021 1:20 am
Blog: View Blog (5)

Re: Narcolepsy/cataplexy

Postby Misanthropic » Wed Jul 25, 2012 9:16 am

I forgot to add, I also move my legs, a LOT. Restless Leg Syndrome can also be seen in some narcoleptics.

Also, microsleep; brief moments of sleep, my hallucinations during the day are thanks to this.

And automatic behavior; Do routine things as if you were awake, but less efficiently. I do this at work a lot, illegible notes, giving out wrong numbers...


I suggest you look up some vocabulary, it will help:


Narcolepsy
Cataplexy
Excessive Daytime Sleepiness [EDS]
REM-Sleep
Sleep Paralysis [SP]
Hypnagogia, Hypnagogic Hallucinations, Hypnic Jerk
Hypnopompic State, Hypnopompic Hallucinations
Microsleep
Automatic Behavior
Sleep Intertia
Insomnia
Hypocretin
Orexin
Epworth Sleepiness Scale
Polysomnogram [PSG]
Multiple Sleep Latency Test [MSLT]
Restless Legs Syndrome [RLS]
"A Wolf In Sheep's Clothing. Hour By Hour The Spitting Image Of A Normal Man."
So how do you portray the sentiment? The ruse is brought, the truth is bent; and much to our dismay, they're ignorant; the more that we make up, the more it fits.
Misanthropic
Consumer 3
Consumer 3
 
Posts: 74
Joined: Tue Jul 24, 2012 9:58 am
Local time: Sat Mar 06, 2021 1:20 am
Blog: View Blog (5)


Return to Narcolepsy




  • Related articles
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users and 1 guest