4 replies to this topic

[KillYrTV]

Hello, I'm Martin, I'm 29. I have some weird sleep issues that may or may not be attributed to narcolepsy. I've had a sleep problem my whole life, but the only test I've had was for sleep apnea (dont have it). I am extremely difficult to wake up in the morning, and my mom says she would have to drag me out of bed and down the hall, and still sometimes I wouldnt wake up. I had nocturnal enuresis as a child and pre-teen, successfully treated with hormones. To this day I sleepwalk, sleeptalk, move stuff around and even smoke in my sleep. Sometimes people will wake me up and have a conversation with me, with my eyes wide open, and they wont realize that I am still asleep and wont remember any of it. I also have memory blackouts during the day. Recently I was riding my bike and a cop pulled up next to me and was screaming at me, and I had no idea what was going on. He said I had run a red light, almost got hit, and refused to pull over. I said I might have been asleep, but he didnt believe me because I would have fallen off the bike if I fell asleep. I guess my genuinely confused look convinced him to let me off with a warning. I am starting to think that my sleep problems may be causing some of my ADHD symptoms. My mom has severe narcolepsy and is prescribed the max amount of Provigil and additional caffeine powder to mix into her drinks (which isnt healthy, but neither is falling into a dead sleep every 20 minutes).

On the other hand, I dont have any of the common symptoms for narcolepsy, such as cataplexy or appearing to suddenly fall asleep during the day (that I know of). I am also very active at night time, usually forcing myself to go to sleep around 5 or 6 am. I am on Adderall for the ADHD and that seems to help the memory and waking up issues, especially if i take it 3 hours before I have to wake up. I dont have any sleep fog and I can get right out of bed ad opposed to missing 4 alarms and being useless in the mornings without caffiene. Since I have kids, I have to get up early sometimes, so that means some nights I dont sleep at all. I'm not sure if its because of my circadian rythym out of whack or too much Adderall (I'm on the lowest dose my doctor is able to prescribe).

Any suggestions are welcome..I go to the Neurologist in a few weeks and I'd like to go informed. Thank you.

[thecatnapper]

Hey KillYrTV, I would suggest that you spend as much time as you can reading posts on this forum before you go to the doc and I guarantee you will see many stories that sound like things you've experienced that you've always thought were normal. You sound a lot like I did 2 months ago when I started looking into my sleep stuff because I thought it was just that my circadian rythm was messed up. I had been very misinformed about Narcolepsy since I was about 8 years old and they had an episode of the old 80s TV show "Different Strokes" where a man fell asleep in a restaurant and everyone thought he was dead but after several minutes he woke up he told them "no I have Narc". The episode was meant to teach kids about not making fun of people with disabilities but was not the best depiction of the typical person with Narc as it showed a very extreme cataplexy scenario. So that had always been my view of Narc and I was shocked when I stumbled across a description of the real symptoms of it while researching circadian rythm disorder. I was like "OMG that sounds just like me!" There are dozens of other sleep disorders that you could possibly have so you are doing the right thing by going to a Neurologist straight off. Keep us posted.

BTW-I "killed" my TV about a year ago

[KillYrTV]

Hey KillYrTV, I would suggest that you spend as much time as you can reading posts on this forum before you go to the doc and I guarantee you will see many stories that sound like things you've experienced that you've always thought were normal. You sound a lot like I did 2 months ago when I started looking into my sleep stuff because I thought it was just that my circadian rythm was messed up. I had been very misinformed about Narcolepsy since I was about 8 years old and they had an episode of the old 80s TV show "Different Strokes" where a man fell asleep in a restaurant and everyone thought he was dead but after several minutes he woke up he told them "no I have Narc". The episode was meant to teach kids about not making fun of people with disabilities but was not the best depiction of the typical person with Narc as it showed a very extreme cataplexy scenario. So that had always been my view of Narc and I was shocked when I stumbled across a description of the real symptoms of it while researching circadian rythm disorder. I was like "OMG that sounds just like me!" There are dozens of other sleep disorders that you could possibly have so you are doing the right thing by going to a Neurologist straight off. Keep us posted.

BTW-I "killed" my TV about a year ago

[KillYrTV]

Well I went to the Neurologist 3 days after my MRI, which seemed normal (on my stimulants) though i was drowsy the whole time in the MRI machine and they couldnt find a vein due to dehydration). I told him all these things and he ordered a comprehensive sleep study for 2 weeks from now. He noted "Hypersomnia NOS" and said he wants to test for Sleep Apnea and Narcolepsy. However he suggested I go off my stimulant meds a week before that, but I'm worried I wont be able to get through the day without em. I have started getting used to drinking caffiene again in preparation. My schedule is so screwed up these days and I have stress coming in from all directions...gf leaving me, loss of a major client, failed college, custody issues with my ex-wife, Minecraft, DCS involvement, a required 4 hours of job search a day, trying to get the kids to daycare with no transportation, keeping the house clean, all while trying to pawn my stuff to get the bills paid..got an eviction notice last week....the list goes on...the 20 mg Adderall XR has been the only thing keeping me functioning correctly enough to be able to keep custody of my kids, and I feel it may not be enough anymore. I want to take full responsibility of my actions like Im supposed to as an adult, but as of right now I am now wide awake but extremely tired after 2 days of no sleep, afraid to go to sleep cause if I do I wont wake up in time to take care of my kids or get my jobs done. Sorry, just venting a lil bit here, maybe a bit impatient ...its just for some reason i trust a bunch of strangers more than anyone involved in my life. I dont even care that they are spying or colluding on me, I am so worn out from stress. All I ask is for some insight, if possible. I'm going to pass out now and probably be late to everything tomorrow.

Thank You, Martin

[thecatnapper]

Geez Martin, you really are going through a rough time. I've been through most of what you mentioned except for the custody thing. I don't have kids and if I did, I don't know how I would be able to take care of them when many days it's all I can do to take care of myself. Kudos to you for trying so hard. Four years ago when my symptoms got so bad and I decided I'd had enough and quit work, I lost everything! My house, my car, most of my friends, and my family thought I'd lost my mind and tried to have me commited! So, I know where you are right now and it's not a fun place to be but no matter what happens it WILL eventually get better and you'll be a better person for having survived it.

It sucks having to go off meds for the sleep study. I'm dealing with that right now because I'm having another study tonight. Even the "specialists" dont get it. I don't care how many years these sleep neurologists and their nurses have studied sleep medicine, they don't know crap about it unless they suffer from sleep disorders themselves. Ooohh let me stop before I go on a rant myself.

Just try to hang in there for the next two weeks. Take some time away from society and the negative media if you can and just focus on you and what you need to do. Do whatever you like to do that you are able to do like listening to some good music, reading a good book, watching your favorite movies...just whatever makes you feel uplifted. I know that is hard to do sometimes because, trust me, I've been there very recently myself.