Hi there- I'm new new member, so sorry that my first posting is coming in the form of a rant. I'll try to keep it as short as possible, but I have years of pent up frustration here.
I've had problems with EDS for over 10 years now. While in graduate school I fell asleep during every class, while driving to class and when trying to study- despite getting a consistent 8-10 hrs of sleep per night. I thought maybe I had OSA b/c I snore but my health insurance plan didn't cover a sleep study so decided to wait for testing. In the meantime, my inability to function normally started to affect my mood and self-esteem. I was put on an SSRI for anxiety and depression, but started sleeping even more. This was interpreted as worsening depression, so my dosage was increased, but I was still tired all the time- probably more than before. Anyway, I graduated and in 2009 I started a new job/training program so I finally was able to get a sleep study. The whole experience sucked. The sleep tech was really creepy (his eyes opened really big the first time he saw me, and he later made some comment about how I didn't look like how he was expecting me to look). I fell asleep pretty early in the night, but the patient in the room next to me started snoring really loudly and woke me up. Then the tech comes on the speaker in my room and says, "I noticed you were having trouble sleeping, do you need some earplugs?" I know this was an innocent, and even helpful comment, but it freaked me out and I couldn't really fall asleep after that. Anyway, the result of the study was "insomnia"--- which is the opposite of what I went in for. I definitely have an anxiety disorder, which has led to insomnia in high stress situations- it happens maybe six times per year, but this didn't explain why I can sleep 10 hours per night, every night for weeks on end and still fall asleep while working on my computer. So I went in to meet with the sleep doctor who then diagnosed me with Narcolepsy with cataplexy by clinical history. My knees used to buckle when I laughed really hard, but that hadn't happened in several years. He explained that the timing of this symptom going away corresponded with when I started taking SSRIs. He also explained that we couldn't do an MSLT because I was on an SSRI. He prescribed Nuvigil and my daytime functionality improved, although I was still spending a lot my free time sleeping.
That's pretty much how things remained until about a year ago. Things have gotten progressively worse, especially over the past 6 months. I've had sleep marathons of 16, 18, or even 20 hrs. I've been late to or even missed work. I've slept through my alarm. Or, woken up when my alarm goes off, get out of bed and head to work- but then I wake up for real and it turns out I was just dreaming about getting out of bed, and have actually missed the first few hours of work. Apparently I fell asleep during sex (while on top) although I have no memory of it- I didn't realized I had stopped. I was brushing my teeth one morning and felt myself falling forward and poked myself in the eye while falling forward. The psychiatrist said I sleeping more because I was depressed and wanted to increase my meds. The sleep doctor tried increasing the Nuvigil, which didn't do anything. I work in the medical field and my symptoms did not make sense to me. I do have wacky, vivid dreams, and nightmares which fits along with other things I mentioned, but the hypersomnia just didn't fit. I started reading about idiopathic hypersomnia and told my psychiatrist that I was beginning to question the narcolepsy diagnosis. Well, she called the sleep doctor and they decided the best plan of action was to take me off all my medications so I could get a repeat sleep study, with MSLT this time. So, over the past 1.5 months I took a partial medical leave of absence and weaned off my meds. On the positive side the extreme hypersomnia has improved since coming off the SSRI. I still sleep more than the average person, but those marathon sessions have not been happening.
I had the sleep study last week and it was a disaster. I was anxious-- I knew that I had difficulty sleeping during the last one and was worried that the same things would happen again. Also, I couldn't stop thinking about how the test results were going to determine my future- whether I have narcolepsy, idopathic insomnia or some pyschiatric disorder-- and how many student loans I have, and how can I pay them back if I can't work. Anyway, the tech kept having problems with the electrodes and kept having to come in the room, pull them out of my hair, and re-attach them. Then she turned the heat on in the room (I live in Los Angeles- heat was not needed) which made it uncomfortably hot. I knew I was having trouble sleeping, which made me more anxious. I asked if I could get out of the bed and sit in the other room until I felt sleepy again- she said no. I tried to play solitaire on my iphone (in airplane mode) which is what I usually do to wind down before going to bed, but she came in the room and told me the phone was interfering with the computer read out so I needed to put it away. I finally fell asleep sometime after 5 am. When she woke me up later I expected her to tell me they didn't record enough sleep to do the MSLT, but she said they were going to do it anyway. Here's the kicker--------> At one point during the MSLT two of the employees in the office were fighting pretty loudly, and I could hear the tech talking to someone on her cell phone. Just before nap number four someone started doing CONSTRUCTION on one of the other suites in the building. The hammering and sawing was so loud that I could feel the vibrations. The construction continued until after I left. Then during nap number five some man dressed in a suit actually WALKED INTO the room I was supposed to be napping in. This was not a hallucination, it really happened. I was later told that this was the owner of the center, and they don't know why he walked in there while I was trying to sleep.
I emailed my doctor as soon as I got home from the study- I told him I didn't think I got enough overnight sleep for the MSLT to be valid, and that naps four and five were interrupted by both construction and some random guy in a suit. He said to wait for the results.
I got my results today: 1. She was given five opportunity taking naps two hours apart. She slept during all five naps. 2. Since the last nap was interrupted due to environmental noise, I did not count the last nap. 3. Average sleep latency was 6 minutes which is short. 4. She achieved REM stage of sleep during second and third naps. 5. This study supports the idea of Narcolepsy while since nocturnal sleep was less than six hours, this MSLT result should be regarded with caution.
I asked him why they counted nap number four considering all the construction. He said they counted it because I fell asleep. Yes, I fell asleep with a sleep latency of 0.8 minutes, but I didn't stay asleep because the hammering woke me up. How can you use that to assess SOREMPs?
Anyway, he recommended staying off the SSRIs if can, and continuing the Nuvigil. Then he tells me that he got his dream job (a new job working for an insurance company) and isn't going to see patient's anymore.
So basically I'm no closer to clarification than I was 2 months ago; except now I've used up my sick leave will have to pay $300 out-of-pocket for a poorly performed sleep study, and am expected back at work on a normal schedule. I don't know what to do, or where to go for help now. I just feel so defeated and hopeless about the whole process.