Narcolepsy and the Quad

A couple strengthening each other's weaknesses through God's love and life's lessons.

As Promised, Life Gets Better

It’s been a long time since I was able to get through the day without a nap or stimulants. I have never been more grateful to God for finally allowing me to feel like a normal human being again. The ups and downs of my emotions, energy, and fights have decreased tremendously since starting xyrem. Amazing is all I can say.

At one point I was up to 30mg ER Adderall. That’s a lot for a girl who was only 92 lbs. before starting medication. I felt great for a month. Then quickly starting becoming sleepy once again. Then my heart started acting up. Then I dropped almost 10 lbs. Two trips to the ER and I was quickly taken off the Adderall.

Next was Ritalin. I very quickly maxed the dose- 60mg a day. 20mg, thirty minutes before having to wake up. 20 mg four hours later. Then another 20. My husband would roll in, attempt to wake me, put water and a bottle of pills in my hand, supervise the medication administration, let me fall back to sleep, then make sure I was up in time to get ready for work. He’s amazing. One thing I loved about him when we met was how patient he was with himself. I could never imagine doing what he does without a grunt or complaint. Now I was teaching him to be patient with others, unintentionally. Who would have ever thought he’d end up being MY caretaker. Of course we had our challenges and arguments, but he stuck by me.

After a couple of months on Ritalin, it quickly lost it’s ability to keep me alive. I sat with my doctor, half asleep. “It’s time for another 20”, I slurred. He responded with the most beautiful words, “you want to start xyrem?” Heck yeah I do. Two weeks after getting the process started I received my first shipment of medication. Just in time too. The weekend before, Devyn and I planned for a zoo trip with the kids. Even with the 60mg of Ritalin I was still falling asleep. Totally missed that trip. And I was more excited about it than anyone.

I have been on xyrem for a month now. My life is changed. I still have good and bad days. But most days I am able to get through the day without any Adderall, Ritalin, or napping. Praise the Lord. My prayers are answered.

Now this I know: the LORD gives victory to his anointed. He answers him from his heavenly sanctuary with victorious power of his right hand. Psalm 20:6

Hannah -The Narcoleptic

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Categories: Narcolepsy, Quadriplegic

Tags: , ,

6 replies

  1. I am so excited to hear that the Xyrem is working out for you! I honestly couldn’t imagine life without Xyrem now. It is my miracle drug! I too had the same struggles as you with the other medications; they all seemed to make my narcolepsy worse. These days its even rare for me to nap, whereas before, naps were the only thing keeping me alive. If it wasn’t for Xyrem I wouldn’t have had the courage or stamina to moved to Scotland and go to graduate school, which is what I’m doing now. You and your husband are a beautiful couple, and I wish you all the best in your journey ahead!

  2. Wow wow wow! I just came across your blog and love it! I am also a nurse with narcolepsy!! My mom is a nurse and also has narcolepsy, and my sister is a narcoleptic in nursing school. We feel your pain! 😂 I am currently not working because I’m pregnant and the meds aren’t safe for the baby. I’ve gone through all the trials you talk about, going through different meds (Xyrem,Ritalin, and Nuvigil didn’t work for me, Adderall seems to be the only thing that works, my sister, however, hates adderall, so weird how it works for some of us but not others). Being off my meds and being pregnant has been very interesting, I’ve very blessed my husband is able to keep me home. We worried that it was to much of a risk to have me work off my meds, I was so scared I’d give a wrong med dose or do something detrimental. Just letting you know there’s more of us narcoleptic nurses out there who feel your struggle!!! ❤️❤️❤️

  3. Another narcoleptic nurse here! Xyrem has really changed my life. I don’t nap most days and rarely need stimulants either! I am very nervous for what life will be like during pregnancy and when we start a family and have babies in the house since I won’t be able to take Xyrem if I need to be able to wake up and hold a crying infant. Glad to hear it’s working for you!

  4. Just wanted to say that I’m an RN and I’m also diagnosed with narcolepsy. I have tried all of the various stimulants, trying to fit short power naps into my day, and other meds to help with cataplexy. Xyrem has been a lifesaver for me too! I used to wake up multiple times in the middle of the night, my sleep was so fragmented that I never felt rested, and then I would get horrible sleep attacks during the day. I still struggle some days with being sleepy and Xyrem has caused me to have some weird, complex sleep behaviors especially when I’m working 3 in a row and have a lot on my mind, but it is the first thing along with Humira for my Crohn’s Disease that has made me feel like I can function like a human! I am so glad to know that there are other people living with narcolepsy who can live a relatively normal and successful life!

  5. Hi,
    I just found your blog today. I was diagnosed with narcolepsy years ago and took xyrem a few times. It scared me to death. My doctor insisted that I take it while already in bed and then wake up and take it again. I had small children at the time and was afraid I wouldn’t hear them. I have ADHD and take dexedrine and that’s helped. I’m having another sleep study tomorrow night. I’m lying to them about my narcolepsy symptoms because I’m afraid I won’t be able to drive. My problem now is sleep apnea and always being tired. I have to be up at 6 and it is after 1am now. If I get 3 hours of sleep I’m lucky. I try to nap but don’t. I’m just so tired all the time. Of course, this is nothing compared to the obstacles you and your husband have to face daily. Keep up your blog. It’s interesting.

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