I currently take Adderall in order to manage my condition. My doctor and I tried several different medications, including Nuvigil and Provigil and unfortunately, those did not work for me. Currently, I take a dose of extended-release Adderall when I first wake up and then a dose of regular release Adderall around 10:30 in the morning, and then a second dose of it around 12:30 and that usually has me… I’m usually good till at least late afternoon and then I kind of can feel more symptoms creeping back in slowly, and then in the evening, I do notice symptoms. I did try Xyrem as well and I really liked that the Xyrem helped me to stay asleep at night. I didn’t like having to take it, wake up in the middle of the night to take it a second time but, unfortunately, I had really bad side effects with Xyrem. I’m pretty sensitive to medications and their side effects, so I wasn’t able to continue taking that medicine. And I do still have issues with disrupted nighttime sleep, unfortunately, but that’s what we’re currently doing. I also utilize different sleep hygiene techniques, like going to bed at the same time every day and only going to bed for sleep and keeping the room dark and comfortable, that kind of stuff. So that is what I do to manage it.

I currently take Xyrem, which is a sodium oxybate solution to help me with my narcolepsy. I take one dose at night before I go to bed, about 3.5 milligrams, I believe it’s milligrams, mixed with water, and I take that and I sleep for about three to four hours, sometimes a little bit less, sometimes a little bit more, and I wake up halfway through the night and I take a second dose of the same amount. This helps me to get adequate sleep more deeper than REM so that I don’t feel as exhausted when I wake up in the morning. My doctor and I came up with this treatment because we’ve talked over the different kinds of medications that were offered at the time when I was diagnosed, and this seemed like the best option for me. I like it better because a lot of the other ones, you’re awake during the day and help you not to fall asleep while this one helps me get adequate sleep.

Well, since I’ve had this for about 27 years I’ve had a lot of different treatments and some that haven’t worked as well as others. Currently, I am taking Provigil and I take it in the morning or, if I have to work, or I’d take it in the evening before I go into work. And then I have some Adderall to take for when I am having problems at night. Or during my shift I just take an Adderall if I need it, I tend to drink caffeine but that’s probably not really helpful. My dad … actually the reason I chose Provigil is, or Nuvigil, actually the one I’m on, I’m on Nuvigil. I like the way that works the best. And I know that with Provigil that it is not as addictive as Ritalin and stuff like that. I was really hesitant to start the Adderall but it got to the point where I really needed to have something for when I got tired during my shift, something extra I could take. So the doctor and I just kind of decided that that was the best. And as I’ve gotten older the Adderall, I’ve kind of had to accept that even though the potential for addiction and things like that, that’s kind of how we’ve decided.

I take Armodafinil once daily in the morning since the pandemic started. And I was diagnosed during that, I haven’t been able just to get a second sleep study because I had one previously that said I had some sleep apnea. And then this got worsened in December of 2019, and then I was seen and diagnosed with the narcolepsy in about May, right after I graduated, and then started taking Modafinil, Provigil, same thing, and had really bad side effects. So then I started this drug, and it helps somewhat more, but I’m still extremely tired, but it’s going to be hard for me to get a different medication without having a sleep study done. But the sleep lab is not open because of the pandemic.

We currently are doing Nuvigil. Provigil wasn’t cutting it, Nuvigil actually works, and the side effects with my other medication is minimal, so we stay with that.

I’ve tried the typical narcolepsy medications, armodafinil, modafinil. And didn’t seem to work even on the maximum dose. Currently, going to be trying Sunosi, which is a new narcolepsy medicine. I originally went in for treatment of sleep apnea and discovered that I had narcolepsy, which made sense because I could go all the way back to my childhood and the struggles that I had with sudden urges of sleep. So me and my doctor are just trying to find a medication that works.

I worked with my doctor to try a couple of approaches, prior to finding one that actually worked. And we finally found a medication that has helped significantly during the day, which is called Modafinil. And it’s helped me just really kind of… My brain, I guess, feels more alert and I tend to not fall asleep quite as often on that. I still do have spells where I will just go out of it, but for the most part that has worked. But I have to combat that with the problems I have at night, sleeping. And so, I tried multiple sleeping medications and all of them left me way too groggy in the morning or left me feeling hungover until we found that a very small dosage of Xanax has helped significantly. And then in addition to that, I’ve really worked to develop a bedtime routine where I ensure that, regardless of things that still need to be done in the house or laundry or dishes or anything, that I am in bed at 10 o’clock and lights out by 11. And that has been really key for me, and the nights that if for some reason, if I forget to take my nighttime med, then I’ll have a horrible night. I’ll be up multiple times. And I also suffer from nightmares in that circumstance as well, and that wakes me up. So I really have to stick to that nighttime routine, in order to make the daytime routine successful.

I have had narcolepsy for over 10 years. So I have been on a lot of different medication. Currently, I am using Xyrem and Baclofen in the evenings, and Vyvanse and Zenzedi during the day. And that allows for me to be awake and go on about my day. The way that I found out that I had a sleep disorder is I thought I was depressed and finally found a psychiatrist that said that I wasn’t, and he felt that I had a sleep issue.

I am currently taking methylphenidate 10 milligrams, twice daily, immediate release. I take that as soon as I wake up. I also take methylphenidate extended-release 20 milligrams twice a day. I also take that as soon as I wake up. So, I take the two medications together because the immediate release will work immediately while it takes time for the extended-release to kick in. They usually hold me over for about four to five hours, and then I have to take my second dose. Then, I also take Xyrem at night, I take it twice a night. After the first dose, about three and a half hours, I take my second dose. We came with this plan because I have a really hard time waking up in the morning, so that’s why I take the methylphenidate to help me wake up. Otherwise, the Xyrem really works. It helps me feel like I actually slept an entire night full of sleep, and then it’s easier for me to wake up, but I still struggle.

My symptoms are managed through the use of stimulants during the day. Xyrem at night and periodic naps in between my short-acting and long-acting stimulant. The Xyrem was recommended by my doctor and it’s been good so far. It allows me to have really good night of sleep. The naps, I didn’t want to do. I’m finding that I need to do in order to make sure I don’t have cataplexy attacks during the day. And the stimulants, we’re still trying to figure that out. So I just recently was put on another stimulant and hopefully, that will not give me heart palpatations like the previous ones did.

I am currently on two medications. One, for a stimulant, to keep me awake during the day. And one to help at night for cataplexy and to help with my sleep, to hopefully to get me in a better sleep cycle, which has helped. The doctor and my husband and I had talked about it extensively to see if these will help. And that was the conclusion we came up with.

I am currently taking 150 milligrams of Wellbutrin twice a day, which is the correct dose, and it’s helped me immensely. I had a sleep study last October that finally diagnosed me with narcolepsy. And I received the proper diagnosis and I’m finally getting the right medication to keep me alert and awake during the day. Still occasionally sleepy, but I’m much better.

I am currently taking baclofen, which we decided because I was not comfortable taking Xyrem along with my depression. I sometimes take modafinil as well to help me stay awake during the day.

I am currently taking Armodafinil because it is a non-stimulant drug that’s not addicting. I was taking 150 milligrams a day, but it seemed to not be working as well, so I am now taking 250 milligrams a day. I could probably use some more help, but I don’t want to move into any stimulant, and neither does my doctor want me to.

My doctor and myself looked at the hours that I seem to require to sleep, for sleep, and day-to-day stressors expected stressors, and how those things are normally for me without medication. And then we determined what hours of the day that I would need to take my medication in order to be most awake and less stressed, and determine as to even what shift of work that I would need to do. And always try to allow a little bit of extra time and energy in the event of a family emergency so that I’m not completely wiped out and the cataplexy does not completely take over my life.

So I’m currently managing the condition primarily with medications, some nighttime medication, some daytime medication. And it’s through just constant conversations with my various doctors and with my husband, who’s my main support, and just knowing that sometimes you need to make a change and things don’t necessarily improve with the different medication regimen, but to just try and always find that optimal combination of medications and doses for maximum functionality.