Even our cat Rowan wanted in on Julie Flygare’s Narcolepsy: Not Alone Campaign!
Narcolepsy is a neurological autoimmune sleep disorder in which the brain loses the ability to maintain normal sleep and wake states. It affects 1 in every 2,000 Americans (200,000-250,000 Americans).
It is an awareness campaign “to prove that narcolepsy is REAL and that we are NOT ALONE. People with narcolepsy AND supporters are invited to submit photos for the GALLERY & MAP.” You can learn more at http://julieflygare.com/narcolepsy-not-alone/
And get your submission in by September 1st! *IF* she can reach 500 photos by her deadline, she will giveaway FREE e-books for ALL of Wide Awake and Dreaming for an entire weekend. Submissions can be of people, pets, collages, cartoons, etc! She’s get close and needs your help! Even if you are not a narcoleptic but have a loved one who is get your picture in!
So it’s been awhile since I shared, exactly three months actually! I really should write more often, sorry! My relationship is still getting better with the ninja and even more lately since he started Xyrem with his Vyvanse. I’ve noticed that he is much more animated which is something that we both have not seen out of him in awhile. Last week I asked him to remember to do something tomorrow evening and usually I would have to remind him a 100 times but not this time, I asked him the one time and he remembered the next evening, heck I had even forgot that I had asked him the night before! I better watch out once he’s on his normal effective dose! Another thing that blew me away was on Saturday he said to me I love you, he hasn’t said that in a very long time, I was shocked to hear it from him. We still fight occasionally but not like he use to. I try not to fight with him because it doesn’t get us anywhere and he usually has a cataplexy attack from it. He’s slowly coming out of his shell and I’m excited for what the future holds!
I also wanted to share two things tonight, first is a patient-focused narcolepsy survey, this is an awesome opportunity for PWNs around the world and their loved ones to share their unique experiences with narcolepsy with the FDA! So please take 15-20 minutes to help educate FDA about what narcolepsy REALLY is! Survery: https://www.surveymonkey.com/s/unitenarcolepsy
And the final thing that I would like to share is a cool Facebook group that the ninja and I have joined. It’s called People With Narcolepsy Pen Pals. The group was made for people who have Narcolepsy, but also welcomes loved ones of people who suffer from Narcolepsy. You have the opportunity to pen pal with people all over the world, PWN can pen-pal with each other or pen-pal with a non-PWN to help educate them. Also spouses/partners of PWN can pen-pal with each other. I wrote my first letter to a fellow spouse this past weekend and am excited to converse with her. I also messaged with another spouse in another county and I could really relate to what she was saying, it made me feel like I wasn’t alone. The ninja is also going to be writing with some fellow PWNs and I think it will be great for him as well to talk to some who is going through the same thing. Check it out!
Since I started taking Xyrem about 2 and a half weeks ago I have already started to see some improvement. I’m still on a very low dosage and won’t be up to the full dose for another couple months but I feel like it is going to work pretty well for me. There have been a few instances where I have noticed that I remembered things that I normally wouldn’t have. A few nights ago my wife asked me to do something the following night and I remembered to do it the next day without being reminded, that is something that I normally don’t do.
When taking Xyrem I also noticed that if I try to get more than 8 hours of sleep I am more tired than if I set my alarm to get up exactly 4 hours after my last dose. That is what my neurologist recommended to do and it helps. Xyrem is normally out of your system 2-4 hours after you take it. I noticed that after it wears off I spend the rest of the time dreaming, there have been times when I woke up around 6:00 after taking a dose at 2 then trying to sleep for another hour. I noticed that the last hour I had been dreaming the entire time even if I only dozed off for a few minutes at a time. I also noticed that I have more energy and am less tired during the day, which is pretty awesome. I just wish I could start taking a higher dosage sooner, but I understand that it isn’t a good idea to do so, so I will wait patiently until my neurologist determines it is safe for me to be on the regular dosage. I will keep you posted on how well it is working.
On Monday I had my monthly follow up visit with my neurologist. I told them how I was still having problems with concentration and memory since I started taking Vyvanse. I also mentioned how I wake up in the morning feeling like I haven’t slept all night even after sleeping for 8 to 10 hours, and I told her about my cataplexy attacks. My neurologist suggested that I try Xyrem, I had been thinking of asking them about it before, so I was more than happy to try it.
For those of you who don’t know what Xyrem is, it is a liquid medication for narcolepsy that is to be taken at night. It is a legal form of GHB (more commonly known as roofies or the date rape drug). It is supposed to put you into a deep sleep, most people with narcolepsy don’t get a restful night’s sleep, Xyrem is supposed to help you get a more restful sleep. It also treats cataplexy and can help with memory and concentration problems related to narcolepsy. Xyrem comes in what looks like a cough medicine bottle, and it comes with 2 tall prescription bottles and a syringe. It is split up into 2 doses. You measure out your dosage with the syringe then put it into the bottles and mix them with 2 ounces of water. You take the first dose before you go to bed, you are supposed to take it immediately before lying down because it can knock you out almost instantly. You set an alarm for 4 hours after you take your first dose, then you wake up and take the second dose. Then you go back to sleep for another 4 hours. It is split up into 2 doses because it wears off after 2 to 4 hours, and you need to take 2 doses in able to get a full 8 hours of deep sleep.
First my neurologist gave me a packet that described what Xyrem is, how it works and she demonstrated how to take it. Xyrem is only available from one pharmacy in the United States, after the pharmacy receives your prescription they will give you a call within 48 hours. They will mail your Xyrem directly to your house. They called me within 24 hours of my last appointment. They asked me for my insurance details and mailing address as well as a few questions about my diagnosis and the medications I was taking. The pharmacist then called me the next day to ask me a few more questions such as when I would be available to sign for my medication when it comes. They told me that they would Fedex it overnight to me tomorrow and I will receive it on Friday. The whole process was a lot faster than I expected it to be. It will also only cost me $35 a month since my insurance covered most of the cost. I was afraid it was going to be extremely expensive. The pharmacy also has their own nurses who will call you every few weeks to see how your are doing on Xyrem which is pretty cool.
I am very excited to start taking it and will keep you informed on how it is working.