7 replies to this topic

[Lottaspace]

Yep, that was me. I just had my Psg and Mslt last Monday night through Tuesday 4:00PM. It was the worst experience of my life and after it was over I ran out (naturally bumping into walls because of my lack of muscle control) with my Medusa hairstyle held in place with that yucky wax, wearing PJ’s, pink slippers and dragging my overnight bag. Like a child, this 65-year-old grandmother had to call her 83-year-old “Mommy” and whine about how awful this experience was.

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 20^th and the other July 5^th 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, 2^nd 20 minutes, 3^rd 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.

[Lottaspace]

5 more days and I will know the results of a very bad Mslt Study. The waiting is like being pregnant in the old days; is it a Boy or a Girl?

[thecatnapper]

I can sympathize for sure and I'm sorry it was so awful for you. I was scheduled for a PSG/MSLT last week. It was horrible! I felt sick and miserable all night like when you are recovering from a major surgery. My sleep specialist requires that you sleep a certain minimum amount of time to "qualify" for the MSLT. My night time sleep is just awful and I knew I wouldn't sleep all night. The tech would not allow me to get out of bed and kept telling me to try to sleep. At home when I get like that I just get up and find something quiet to do because trying to force myself to sleep makes it much worse. I don't know how many times I fell asleep and woke up but I thought I had at least slept 3-4 hours but at 6AM the tech woke me up and said I didn't sleep long enough to have the MSLT. He said he had added up all the little sleep fragments and I had only slept 90 minutes all night. I was so discouraged but he told me not to feel like I had wasted my time and said it's better to come in and have a terrible night sleep so they can see what's going on than to come in and sleep like a baby with no problems. I'm waiting for a call from either the Dr. or the sleep lab manager who said they may possibly have to do a special study for me being that I typically dont' fall asleep until 3 or 4AM. Aparantly some sort of abnormality showed up because the tech said that there was obviously something going on and he said that my difficulty staying asleep that night was, in his words, "probably half due to what's wrong with you and half due to your anxiety about trying to get a good study" . I was really hoping for a cut and dry study and that I would get a quick diagnosis and that the doc could put me on Xyrem as he planned but looks like I'm gonna have to be patient for a little bit longer.

[Since1967]

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.

[Lottaspace]

Looks like I will have to wait until tomorrow to get my results of sleep study. The second Neurologist will not answer the phone from the 1st neurologist office, yesterday or today, thereby not giving up the results. I know the economy is bad, but when you have two neurologists fighting over whose patient you are going to be, that is ridiculous. I've got an early appointment tomorrow (original follow-up appointment was for July 5th) with the second neurologists. Looks like 2nd Neuro is going to be my Doc. My ESP knew this was going to happen, that's why it is so riduculous. I wish there had been a fly on the wall with a camera at the 1st Neuro's office. Two receptionist, 1 Neuro, my hubby and myself in his waiting room - all going hysterical. The receptionists saying "sue" the 2nd Neuro for not releasing the records, the Neuro saying he can't treat me without the records, my hubby and I trying to get the 2nd Neuro to answer their phone using our cell phone, my screaming at the 1st Neuro saying if the 2nd Neuro has all the power, what good are you. The 1st Neuro saying "Don't go there." I tell him a psychiatrist could treat me - he says "No". My hubby draggs me out of his office. No wonder it took me 65 years to persue this.

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."

[sandrad]

My study was awful for me as well. By the end of it I was begging them just to let me leave, the hardest part was staying awake in between naps, they would wake me up about 7-8min into my naps because I fell asleep during the first 2min of every nap. They started the "naps" at 6am and I was just stuck in a room with no windows staring at the tv trying to stay awake. It was probably the worst feeling of my life! Sorry for your experience I hope things get better from here on out!

[Lottaspace]

Finally! A diagnosis. Narcolepsy. Excuse my pun on words, it was a "Nightmare". Still have to wait 3 to 7 days for meds, due to Insurance coverage. Neuro prescribed Nuvigil, but insurance only covers Provigil, which is what he wanted me to take but was unsure of insurance coverage.
Sweet dreams, everyone.

[thecatnapper]

Oh good, I'm so glad you got a diagnosis and hopefully you'll get approved for meds soon and will be a new woman in a few weeks!