Medusa Seen Running Out Of Mslt Study!
Posted 15 June 2012 - 01:33 AM
I haven’t introduced myself yet, so for a little background, I have had sleep attacks, brain fog, weak muscles, inability to wake in the mornings and a 99% chance that my wake-up time is 1:00AM to 5:00AM and 1:00PM to 3:00PM. I was diagnosed with Narcolepsy/Cataplexy in the late 70’s because of an EEG Sleep test by a psychiatrist. My Mother, her deceased brother and father all have the same symptoms. My 38-year-old daughter just got diagnosed with Narcolepsy. We all have more symptoms than that, but for time sake and a definite diagnosis – that’s for a later posting.
Since I’m 65 and now have Medicare, I miraculously have two Neurologists – go figure? Did somebody say “Insurance”. I’ve even had the Narcolepsy Panel Blood Test. I see one Neuro (my shortcut name) on the 20th and the other July 5th so they can each give me their opinion. I didn’t ask for two Neuros nor two opinions, but it should be interesting.
Considering I was nervous and anxious before and during this sleep study, the Psg went better than I expected. I did go to sleep and woke up about 2:00 or so. I don’t wear a watch. Everything I know about Narcolepsy, I have learned from this forum, so I asked her if and when did I have REM sleep. She said REM was during normal sleep cycle and not during the Narcolepsy time frame. OK, that was discouraging and I am wondering what then is wrong with me and my entire family, LOL. I told the technician that I wouldn’t be able to go back to sleep until the sun comes up. She nicely and calmly told me to just lay down and maybe I would just go to sleep. Well I did and I did go to sleep. Naturally the first thing I asked her when I woke up was did I have REM and when? She said I immediately went into REM. Her shift was over and I thanked her for her kindness.
Next the Mslt study or a/k/a the “Diablo Shift”. All of you who have had the test know the drill. 20 minutes to nap then you have to stay up for an hour and then another 20 minute nap try. So the new technician asks (after every nap) “Did you sleep? Did you dream?” My answer was always “No and No”, respectively. At home when I have a sleep attack, my hubby lets me know how long I slept and reassures me it is still the same day. The entire study I kept in touch via cell phone with my hubby so he knew approximately what time I napped and how long. My first nap was 40 minutes, 2nd 20 minutes, 3rd nap 40 minutes. I asked the new technician why the difference between 20 and 40 minutes for naps. He said if you go to sleep then we extend the time to 20 minutes more. Say you go to sleep in 18 minutes then add 20 minutes more for 38 minutes. I also asked the technician if I slept since I never knew. He told me not to ask him because he couldn’t tell me. Granted, I should just accept his comment. But Noooo….I don’t. I’m stressed, I’m anxious, I feel like our family’s future generations are relying on me and I’m failing the test. Weird thinking, but that is how I felt. Now I am thinking maybe my daughter and I have been misdiagnosed. Maybe we all have a new diagnosis that no one has ever heard of or seen. Maybe we can call it “Larkcolepsy” or maybe our biological clocks are off . To make a long story short, from my discussion with my mother – she came to this conclusion: “Wow, you are told to go to sleep, then they wake you up if you go to sleep, then they tell you to go sleep, then wake you again if you do; isn’t that torture? No wonder you feel the way you do.” Never fails, mothers’ wisdom.
Thank you all for having a place to vent and share.
Posted 16 June 2012 - 09:54 AM
Posted 18 June 2012 - 11:30 AM
Posted 18 June 2012 - 08:40 PM
I’m stressed, I’m anxious, I feel like our family’s future generations are relying on me and I’m failing the test. Weird thinking, but that is how I felt. Now I am thinking maybe my daughter and I have been misdiagnosed. Maybe we all have a new diagnosis that no one has ever heard of or seen. Maybe we can call it “Larkcolepsy”
Maybe you have read that these sleep lab tests are less reliable the older the patient is. I found this link to a PowerPoint slideshow www.midsleep.com/Refer/documents/NarcolepsyMidwestSmall.ppt which mentions on slide 23 that the false negative rate for these studies is 20-30% and the study is less sensitive for narcolepsy in older adults because sleep latency increases and SOREMS decrease with age. So the test really can't rule out narco/larkolepsy. It can only add support for such a dx. Although it sounds like it is often used to rule it out. But should not be. At least at yours and my age.
(It didn't mention if they can catch Larkolepsy.) Hope I never have to take one of those tests. Good luck.
Posted 20 June 2012 - 11:30 AM
I don't like drama and when it comes to "fight or flight", I'm the "flight". My family is the "fight" because we all use our adrenaline to prevent sleep attacks, the fog, etc. I freeze up with anger, unless I pump my adrenaline and start screaming. It's the only way I can talk, get it out, or I stand there frozen, words not coming out, etc.
Until tomorrow, "Sweet dreams, everyone."
Posted 20 June 2012 - 03:52 PM
Posted 02 July 2012 - 01:29 PM
Sweet dreams, everyone.
Posted 02 July 2012 - 08:49 PM