A few nights ago I officially had my sleep study and the results are pending. I should find out next week what the results are. Even though the nurse wasn’t supposed to tell me, because she liked me I guess, she told me I didn’t have sleep apnea (duh!). But it was nice to hear of the confirmation.
I met with the sleep and pulmonologist specialist a few weeks ago and he is by far the best doctor I have come across. I just found a sleep clinic in my area and scheduled the appointment without a referral because my PCP was being difficult. When I arrived I was immediately impressed with how they were handling the Covid-19 situation. They had me call to notify of my arrival, told me to wait outside the clinic instead of the waiting room. They brought me right into the patient room. Masks and social distancing as much as possible. The nurses did their thing by checking my lung capacity and such. I assume it was fine and normal, but they didn’t say one way or another.
Then the doctor came in. He listened to my condensed story of problems, seemed to empathize with my “PCP doctor was useless”, and didn’t interrupt when I was speaking (which blew me away)! I was using medical terms that I was familiar with from my research and other experience to help the doctor take me seriously. Though my experience with other doctors, I knew that by using specific examples (nodding off while in line at the store, sleeping over 10 hours per day, etc) and by using terms like “cataplexy” they would hopefully know that I’m not messing around. The doctor responded by using similar terms and phrases, which led to me nodding along, agreeing with everything he said.
I wish I could’ve recorded our conversation because it was an early morning appointment and with my fatigue, my brain isn’t working at capacity so I don’t remember nearly enough, but I agreed with everything that he said. He openly stated that it doesn’t sound like I have sleep apnea based on my symptoms. What made me question was when I mentioned who my PCP was, he seemed kind of surprised that I had an issue with him.
At this point, he is pretty sure I am leaning more towards Narcolepsy without Cataplexia, a sleep disorder which causes my sleep patterns to be off (he didn’t mention a disorder name), or plain old Idiopathic reason. He explained how a sleep study and Multiple Sleep Latency Test (MSLT) would be needed for all of these tests. I explained how I was worried about the cost, and he explained that all of the cheaper sleep study options are not going to help with my situation. The at-home sleep tests wouldn’t measure brain waves and such that would be needed. I knew that was a possibility but I was hopeful.
He explained that if the sleep and nap study showed nothing, then it could be any number of things, but at this point, a sleep/nap study is needed to rule out sleep disorders. I joked that I was hoping my watch would be enough, and he seemed almost excited that I knew about those tests. I pointed out how the apple watch can be MORE accurate according to the study I read. However, it doesn’t read brain waves like an EEG does, so a full sleep/nap study is needed.
To prep for my sleep study, I was off of my Adderall for over a week, and the day of I made sure to wake up at 8 am and have no caffeine all day. I was aware that the sleep study would be uncomfortable and difficult to sleep because of the wires and such, so I wanted to make sure that was as easy as possible. I get there and the nurse is talking nonstop. She seemed to talk like me when I have too much caffeine – which for being an overnight nurse I don’t blame her at all! She was impressed with how much I knew about the sleep study and the MSLT nap study, so she was just talking about anything and everything because I knew how it would all work.
She connected about 30 wires to me, some in my hair, on my head, all over my face, my chest, legs, arms… had me sign a waiver to be video recorded (I understand why, but creepy!) and set me up with snoring and breathing recorders. She also informed me that she would be waking me up around 5:30-6 am!! I warned her that I was not a morning person. She was very nice and personable, we joked about our husbands/bed partners and the silly things men do. She turned off the light, told me she will only come in and bug me if one of the wires gets disconnected.
It took me about 45 min to fall asleep, because it was a new place, no white noise like I am used to, wires tugging… But I felt like a blinked and it was morning. They disconnected about half the wires for the nap study but left all of the ones on my head. I had to carry around this box where my wires were connected all day. At 7:30 am a new nurse came in and set me up for my first nap. This time she set me up with a white noise machine since the office was open and such. I napped for 20 min, she woke me up and we repeated about 5 more times that day. Awake for 2 hours, nap for 20 min, repeat.
Around noon I was half asleep and started to ask but had difficulty forming the thought:
Me: “How much…?”
Nurse: “How much more of this torture?”
We both laughed, but it was kinda true. Some people may think “Oooh, you get to nap all day!” No, not at all.
The naps are un-refreshing and annoying to be woken up repeatedly.
I went home and got a few things done, had caffeine to get rid of my headache. And sat around waiting for the results. According to the digging that I did and the very little they were allowed to tell me while waiting for the doctor’s “official results” I did not hit REM at all during the naps which means no narcolepsy. Meanwhile, I am collecting references to find a new PCP. No matter how everything comes back, I will still need one.
I can only hope that this leads to answers, but time will tell.
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