APRIL 2, 2013 UPDATED SLEEP STUDY RESULTS IN POST #52!
I can't tell you how excited I am to find a board like this.
I have been lurking the past few days, reading about many of your experiences and I am both encouraged and discouraged at the same time. Let me tell you why. This is kind of a long post, so please bear with me. I would love feedback.
For as long as I can remember, I have struggled with extreme exhaustion, vivid, non-stop, disruptive dreaming, even as a child.
I also had and have frequent sleep paralysis and hallucinations. Growing up in a religious environment, I could not talk about those things, though, because the few times I mentioned it, I was told I was possessed by demons.
Usually though, most people thought I had an active imagination or anxiety problems (admittedly, I have both). But I always felt it was beyond just these two things. I felt that I should never have to wake up exhausted because my dreaming was and is so disruptive.
I am almost 30. I don't have insurance so it was a struggle for me to find a doctor willing to refer me to a somnologist. I finally went to consult with one in January. It took 11 months for me to have a sleep study, but I just had one this past weekend.
Just backtracking a little bit:
My doctor (also a psychiatrist) treated me for clinical depression for a while, but Prozac and Lexapro gave me night terrors, I can't even speak of them today because they were so disturbing. They did not help me much with the daytime exhaustion, though there were some mood benefits. I struggle with depression and SAD so I noticed a slight upbeatness (is that a word? ), but the sleep disruptions were not worth the small benefits.
She also tried Wellbutrin, but that didn't help much. I didn't experience any relief with the dreaming.
She ruled out depression and started to treat the sleep problems as insomnia, though she did not want me on Ambien because she said it sounded like I got too much REM sleep (she was heading in the right direction, I think!). I tried Trazadone, hydroxyzine, and carbamazipine, but all gave me terrible sleep paralysis and hallucinations, though I felt sedated.
I have also tried valerian root and melatonin and both gave me nightmares similar to what I had with the Prozac in addition to terrible sleep paralysis.
Everything got much worse when I started working 3rd shift. I was a mess. That is when she referred me to the somnologist.
In the meantime, she diagnosed me with ADHD, which fits much better than the depression. You would think with ADHD I would have energy to balance out the exhaustion, but it unfortunately doesn't work like that. The exhaustion compounds the lack of focus.
I take Ritalin for the ADHD. I can still fall asleep after taking Ritalin sometimes.
January 2012 to present:
I never considered narcolepsy because I also thought of narcolepsy as extreme cataplexy.
I went to a teaching hospital that works with uninsured patients and the doctor, who was a fellow at the time, was really confused about what I was talking about. I felt crazy telling him. I didn't even go into a lot of detail about the hallucinations and sleep paralysis because I was concerned as being written off as being schizophrenic or something like that.
The doctor went to get the director of medicine and almost immediately after he sat down, he asked, "Has anyone ever told you that you may have narcolepsy?"
And I started giggling!
He went on to explain a lot about it, that it wasn't just the cartoon-ish version most people understand narcolepsy to be.
Even after this, I didn't go into the detail about hallucinations or sleep paralysis, but he was very understanding and did not write me off as needing to be admitted to their inpatient mental health clinic. The more I thought about what he said about narcolepsy, the more I thought this, I thought this could be me.
He also asked me about cataplexy experiences, which at the time, I never though I have had, but I have. My arms and legs have a lot of weakness during extreme laughter or excitement. I have only collapsed a few times, but I thought that was just because I was laughing a lot. It was uncontrollable muscle relaxing. Sometime I get lightheaded if I'm extremely angry, but have never collapsed.
I am extremely nervous that my sleep study won't have good data. I'm afraid I'm going to be stuck where I am now. I stopped all medication, even MVIs, for 2 weeks. The doctor wanted me to have toxicology urinalysis done, but I couldn't get to the lab. This makes me more anxious. Hopefully he will take my word for it that I stopped. I fell asleep in class a few times (I haven't done that since I started the Ritalin last year) and napped more than usual because while the Ritalin isn't perfect, it helps me be more alert and focused.
At my sleep study, it took me forever to fall asleep, which is extremely uncommon. I was extremely anxious. I apologized to the sleep tech over and over. He said it was okay. Every time I woke up during the night, my heart was pounding, which is also unusual, but I guess the tech said that is kind of common because the body senses it is in a weird environment. The overnight tech said that I didn't have any apneas or snoring, so that is good.
During the MSLT, I don't think I slept during all the naps because I was also extremely anxious. I now understand how sleep latency is scored so I wish I would have paid attention to nap start and stop times. I know for sure I slept 2 times, but I don't know about sleep onset/REM onset time. The other 3 naps, I'm not sure.
Napping for me has always been weird though because I have the same problem everywhere I nap: I don't realize I'm napping until I wake up and my heart is pounding, I feel like I'm fighting sleep, or I have sleep paralysis. I sometimes can't tell if I'm dreaming or just having weird, random thoughts, but then my heart starts pounding upon "waking." Almost like my body is scared that it has been "sleeping." Does this make sense? When I try to describe it, I feel like it doesn't make sense.
I guess I'm extremely worried I won't be diagnosed with anything and be told everything is fine because my anxiety got in the way of "real" results.
Everything is not fine. I don't know what it is like to sleep restfully. I don't know what it is like not to remember my dreams, not to smell, taste, hear, feel, and see vividly in my dreams EVERY NIGHT. My dreams aren't usually pleasant. The fellow doctor said that even if my dreams don't terrify me, they still count as nightmares. That means I have nightmares every night. I just want peaceful sleep. I have dreamed enough for 5 lifetimes. I don't want to remember my dreams. I want to feel refreshed during the day. I don't want to fall asleep in class or at work or just sitting down for a few minutes.
Please, give me your opinions! I guess I need encouragement, reassurance, but also honesty. Maybe this is all in my head.