Sleep Study in Spain

There’s only one medicine, sodium oxybate, which treats all the symptoms of narcolepsy — daytime sleepiness, sleep attacks, REM intrusions, the whole deal. I’ve never tried this drug because it’s very tightly controlled, but it’s life-changing for so many people with narcolepsy, and honestly, my life needs changing. The medication I’m on doesn’t cut it, and my quality of life is poor.ย 

So, I’ve started the process here in Spain to get sodium oxybate. The first step, after an initial appointment with a sleep specialist, was to undergo a sleep study to confirm that I have narcolepsy, which I did this past Wednesday and Thursday at the Institute of Sleep in Madrid. I’ll write more about my experience duringย the sleep study later — for now, enjoy this picture of me all wired up!

(Actually, after this was taken, I got tubes in my nose and electrodes on my neck, chest and hands, too. I felt like a cyborg!)

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4 thoughts on “Sleep Study in Spain

  1. Clem from France says:

    This picture brings back so much memories…you had never done a sleep study before ?
    I remember mine, I was 10 (I’m lucky enough to have my aunt as a general practitioner, and my mom’s a midwife, so my symptoms were quickly spotted and taken care of), and trying to sleep in the summer in a room with no AC, all wired up and the lights slightly on because they had a camera filming me in my sleep was not the best experience ever.
    But it was necessary. And when you can finally put a word on what’s happening to you, when doctors prescribe you life-changing medecine…you realise it was worth it (I also felt like a cyborg, especially with the things they put on my finger and my toe ! ๐Ÿ˜‰ ).
    Reading some of your other posts it also feels like you have stronger symptoms than I do, but I guess that finding the good treatment also plays an important role on how the disease affects us…
    I’ve been on Modafinil since the beginning (12 years ago…gosh I can’t believe it’s been that long !), and it works fine.
    What are you taking at the moment (or used to take, if you managed getting sodium oxybate), if you don’t mind me asking ?

    Like

    • Hey Clem! Yeah, that was my first sleep study. I was just diagnosed over the summer, and between my initial appointment with the sleep specialist and my moving to Spain there wasn’t enough time to schedule a sleep study to confirm the diagnosis. My Dr. specializes in narcolepsy, though, so I’m glad he was comfortable with treating me even without a sleep study.

      Right now I’m just on a LOT of Adderall plus Modafinil. Modafinil doesn’t seem to phase me at all, unfortunately :/ Adderall is okay, I still have sleep attacks and stuff on it but it helps me get out of bed and do what I need to do, usually.

      I just had a second sleep study and will hopefully have the follow-up this week. Fingers crossed that I’ll qualify for sodium oxybate!

      Like

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