Osmosis Does Narcolepsy

This video by Osmosis on Youtube is probably the best explanation of narcolepsy that I’ve seen so far! The only thing they get wrong is they leave Xyrem off the list of medications that treat narcolepsy.

Check it out — you may want to share it with that person in your life who doesn’t believe narcolepsy exists. (Everybody knows聽that person!)

 

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Straight-Up Good

Reason #1383509 why Xyrem is worth all the聽hassle:聽

Pre-Xyrem, I was taking 150mg of Nuvigil (armodofinil) and 40-60mg of Adderall a day, plus coffee, and I was still a zombie, sleeping all the time and low, low functioning. I might as well have been taking sugar pills for all the good those stimulants did — they certainly didn’t keep me awake!

I have been on Xyrem for a total of four months now, titrating up slooowly. About a month ago I got up to 3.5g twice a night, which is the lowest dose that works for me (I start feeling better during the day on this dose). I’ve stayed at 3.5g since then.

I now take 10mg of Adderall to wake up in the morning and that’s it. That’s it! I sleep for about 8 hours a night and take one 20-minute nap in the afternoon, if at all. I don’t even drink coffee anymore!

And here’s the kicker: I feel pretty decent聽throughout the day, and it’s my own energy, not fake-feeling stimulant energy. It feels so natural, it’s amazing. Soon I hope to go from “pretty decent” to straight-up “good”. 馃檪

Sorry!!!

Wow, I’m the worst. I haven’t written at all since I came home from Spain three months ago. I’m sorry!

In my defense, it’s been a weird three months. To summarize, I came home, was a pathetic slug on the couch for quite a while, started a free trial of Xyrem, loved it, everything was awesome, had to stop my trial of Xyrem to do a sleep study for insurance, went back to being a couch slug for weeks, did the sleep study (spoiler alert: I have narcolepsy), went back on the trial of Xyrem, had a SUPER RARE AND WEIRD reaction to Xyrem because I didn’t titrate back up, spent a week in the hospital, left the hospital and am now taking a little bit of time off from聽all meds to reset my body聽while I wait for my insurance to pay for my first real, non-trial shipment of Xyrem. Once they pay up (which will happen very soon, I hope!), I’ll get my first month of my very own Xyrem and will be good to go.

Even being hospitalized is not going to scare me away from Xyrem. It’s amazing. It’s a miracle drug, I’m telling you. It might be an actual miracle. I’m going to write a lot more about it because I think every narcoleptic should be on Xyrem, it’s THAT GOOD.

Case in point: when I was on Xyrem, there were days when I had to seriously ask myself whether I felt normal or not. 聽It was like,”What is this weird feeling of nothing being wrong with me? Is this how everybody feels all the time?”聽That’s how close to ‘normal’ I was!

It was like having a second chance at life, I felt better than I have in years and it was like my future was unlimited. The huge divide that I felt between myself and everybody else vanished because, for the first time, I had one foot in the land of the awake. My聽other foot will probably always be in Dreamland, but at least with Xyrem I can exist in both worlds.

I’ll write at length about Xyrem soon because if there’s one thing I’m good at, it’s talking a lot about the things that interest me. And when I feel good, it’s FUN to write and I WANT to write, which is amazing too. Everything comes so easily when you’re not exhausted.

Thanks for sticking with me. I am seeing the light at the end of the tunnel and I can’t wait to tell you about how great life is right now.

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Illness is the night-side of life

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Picture is a repost from Julie Flygare.

La enfermedad es el lado nocturno de la vida, una ciudadan铆a mas onerosa.聽Cada persona al nacer posee una ciudadan铆a dual, en el reino de los sanos y en el reino de los enfermos. Aunque todos preferir铆amos s贸lo utilizar el pasaporte bueno, tarde o temprano cada uno se ve obligado, al menos por un tiempo, a identificarse como ciudadano de aquel otro lugar.

Taking my bad passport and heading home, to the other place.

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.聽

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 during聽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!)

You Are Brave.

I have a confession to make.

So many people have told me that I’m brave for moving to Spain. It’s something I can count on, the part of the conversation where they ask, “驴Est谩s sola en Espa帽a?”聽— Are you alone in Spain? And I say yes, and they say, “Joder. Eres valiente.” — You are brave.

And I never know what to say in response, because here’s my confession: It’s really not that hard.

Having narcolepsy is a thousand times harder than living alone in a foreign country,聽so much harder that it seems almost stupid to compare the two. Living in Spain isn’t difficult the way having narcolepsy is difficult. Life in Spain is challenging, sure, but it’s the good kind of challenge, it gives you depth. You learn to survive on your own and speak a second language and make friends and navigate a totally foreign culture. That’s challenging, but that’s growth.

You don’t grow from having narcolepsy. Narcolepsy keeps you flat, isolates and humiliates you, keeps you from thinking and laughing and speaking the way you normally would. It consumes you, you spend every moment thinking about it, because you have to. Do I have enough energy to go to the grocery store? Will the next fifteen minutes be good minutes, can I use that time to cook lunch? If I take my medicine now, will I feel okay when I get to school? Careful, don’t laugh, you’ll have cataplexy. Don’t feel frustrated. Don’t get excited.

“You’re shy, aren’t you,” people tell me here, because I don’t talk much, I don’t express much, I’m reserved. But I’m not shy. If emotions gave you seizures, how much would you let yourself feel?

Narcolepsy steals everything it can from you, and there’s nothing you can do about it and no words that make it less painful. There’s nothing redeeming about having narcolepsy.

My mom and dad have both told me, on separate occasions, that if they could be the one with narcolepsy instead of me, they’d do it. I know the proper response is for me to say, “No, I could never do that to you,” but honestly, if I had a choice, I would let them have narcolepsy and I would be the healthy one. It’s horrifically selfish of me, obviously, but having narcolepsy is torture, and I don’t want it, and if I had a choice, I would pass the burden on to someone else.聽