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Awaiting Sleep Study Results


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#1 Taylenne

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Posted 16 August 2012 - 11:25 AM

Background:
I've been "sleepy" all my adult life. I've had SP and HH on a semi-regular basis (5-30 times a year, depending on circumstances, meds etc). I've had disrupted sleep as long as I can remember, even as a child. I do NOT have Cataplexy. And I don't believe I fall asleep quickly, however, my first sleep study said my sleep latency was 2.9 minutes. I was shocked by that!
I've complained to my doctors about being tired, listless, having no stamina many times over the last 25 years. My thyroid is under-active so I've been on synthroid for nearly 20 years. My TSH is in the normal range with treatment. My Iron levels are usually in my boots, so off and on, I've been treated with iron. Currently I've been on iron for 13 months and my iron levels are up. I'm STILL TIRED!

My young daughter was diagnosed with narcolepsy and cataplexy a year ago. That's when I learned about narcolepsy and I thought to myself that this describes how I've felt most of my life.

In June I had my first sleep study. I was disappointed with the results. The sleep specialist said I had Sleep Apnea, which explained why I've been so tired. He's the expert so who am I to question that "diagnosis" however, my study showed 0 apneas, and 0 obstructions. The sleep apnea was based on 74 hypopneic events (over 6 hrs of sleep) that resulted in arousals but no oxygen desaturation. My REM latency was 81 minutes. My sleep stages were relatively "normal" in structure and percentages.

I asked if there was anything in my study that might indicate narcolepsy. He seemed surprised that I asked that. We discussed it briefly - my symptoms, my positive family history of 2 close relatives with narc/cat, my daughter's positive blood test for the narc gene. I asked for an MSLT and he booked it immediately.

I went for my (second) overnight sleep study followed by MSLT 2 weeks ago. I was shocked that they gave me imovane to make sure I slept well before the MSLT the next day. How would imovane affect the results of a sleep study, and if it doesn't, why don't the give it to everyone so they sleep well during their sleep studies? Anyway, now I'm waiting for the results. Yesterday I went to my family doctor for an unrelated matter and she briefly eluded to the fact that "they (the sleep clinic doctor) think you might have narcolepsy and they are calling you back to discuss treatment options". I was too stunned to ask for clarification, knowing I have an appointment with the sleep specialist on Monday Aug 20th.

Are sleep studies that hard to interpret that they could have missed any signs of narcolepsy on the first study? Honestly, he seemed shocked that we asked about narcolepsy at our first result appointment, but seemed willing to investigate it further. Is Sleep Apnea just a quick "go to" diagnosis? If I don't have obstructions, would a CPAP machine even help me? I would think the shallow breathing was central as opposed to obstructive. BTW, I am very thin and not the typical body size/shape for someone with sleep apnea. And I don't snore. This was determined on my first study.

Has anyone else had a similar path to diagnosis? Does anyone know how imovane might have affected my overnight or daytime studies?

Thanks in advance,

Tay

#2 smg08009

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Posted 16 August 2012 - 01:15 PM

Hi Taylenne!
I was officially diagnosed with narcolepsy with cataplexy on August 2nd, after three sleep studies and one MSLT over the course of the last year. Initially, my main complaint was SP. I was have multiple episodes a night after a weird "fainting" spell (which my doctor and I now believe to have been cataplexy). I was diagnosed with obstructive apnea after my first PSG and have been using a CPAP religiously for the past year. I'm only 23, underweight, and have never snored. However, my father, sister (who have also been diagnosed) and I all have oversized soft palates which obstruct our airways during sleep. My apnea was extremely mild, but since I'm asthmatic and was absolutely terrified to sleep my doctor gave me the CPAP. The CPAP did help, but the SP episodes continued and I began suffering clearcut HH. (Previously I was unsure if I had experienced hallucinations or if I was dreaming them. lol) I saw a new neurologist in June, had another PSG with an MSLT. The neuro told me that narcolepsy usually will not show up on the initial PSG. From what I understand, apnea is usually either completely ruled out or treated before narcolepsy is investigated. I went with my sister to her PSG/MSLT follow-up today (she has n w/c and mild OSA too) and the doctor told us between 30-50% of narcoleptic patients also have apnea or "sleep disordered breathing."

It doesn't sound like you had any apneas during your study, but there's really no harm in trying CPAP...other than maybe the cost or the inconvenience of adjusting to the machine. Like I said, I still have SP with the CPAP, but the episodes are much less frightening...probably because I know I'm at least still breathing.

Hope that helped some! :)

#3 lilmomm

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Posted 16 August 2012 - 06:32 PM

Hello,

The PSG cannot diagnose Narcolepsy at all. It is done to rule out any sleep disorders that may cause a disruption in the sleep cycle and to ensure that you do get at least 6 hours of sleep the night before the MSLT. I have been more tired than normal all my life as well and my PCP just scheduled me for a PSG. When they called I told them that I would rather see the specialist first and have them decide what studies I needed based on my symptoms because PCP's are often not very knowledgeable about specialty subjects, only generalized subjects. I was scheduled for a PSG and an MSLT and got my diagnosis which never would have happened, or would have been greatly delayed, had I never seen the sleep specialist. Glad you are finally on your way to figuring this out and maybe you can get some treatment that works for you.