6 replies to this topic

[ozwald]

vitals: I am a 38-year-old woman and have had sleep disorders my entire life.

Hi There,

I'm new here, but I'm so happy to have found this site. I experience EDS and am "narcolepsy suspect." Although I didn't have abnormal REM patterns during my sleep studies, I have had since childhood occasional episodes of sleep paralysis, frequent hallucinations while sleeping, and scary episodes in which I sleepwalk (or run). I also have vivid, detailed dreams and dream going into sleep (and during, and coming out). These symptoms, coupled with my frequent naps and overall lack of energy, made both of the neurologists I have seen conclude that I probably have narcolepsy although the REM patterns don't show it. In other words, I am a "likely suspect"

My questions for you all are about medications and interactions. A few years ago my first doctor prescribed me Provigil (or maybe it was Nuvigil; i frankly can't remember) and gave me a month's supply of samples because I was leaving the country for a year and wasn't sure what my insurance/medical options would be abroad. I was grateful she did this for me, but I was freaked out by the thought of taking a CNS stimulant in a foreign country, so I never took a single one. I think I ended up throwing them out in the move. At any rate, I am back in the country, I love my job, but the sleep symptoms, especially the EDS, have become a real problem, so I went to a new doctor where I live now. He was wonderful -- he took me seriously, looked at my previous sleep studies, we had a long talk, and he gave me a sample pack of Nuvigil to try. Long story short: the Nuvigil has been great so far. Nothing trippy, loopy, or high-like about it. I just feel *awake*. I want this to work out so badly -- I want to keep taking it, but I don't want to get too excited just yet. So here are my questions:

1. I take zoloft for depression. It works great. I have taken it for a few years now, and I don't want to go off it. But the doctor said that it might have skewed my REM patterns during my sleep study. Is there a study that anyone is aware of about how zoloft might effect REM?
2. Before I tried zoloft, I tried and found out the hard way that I am allergic to Wellbutron (bupropion). It took three weeks for the allergy to manifest. When it did, I had this awful hive-rash where the hives were perfectly symmetrical circles. My g.p. had to put me on steroids until it subsided. Because Wellbutron and Nuvigil both have a relation to dopamine, I am afraid that I will prove allergic to Nuvigil, as well. Is this fear unfounded? Has anyone had success with Nuvigil who is allergic to Wellbutron? If you did find out that you were allergic to Nuvigil, regardless of Wellbutrin, how long did it take for you to find out?
3. The labels on Nuvigil say to avoid alcohol and limit caffeine use. I like to have wine with my dinner and coffee with my breakfast. Has anyone experienced adverse affects mixing moderate amounts of wine and caffeine with Nuvigil?
4. It says the half life of nuvigil is 15 hours -- but does anyone know more about the rate of dispersion during that time? I notice little waves of sleepiness that subside throughout the day and wondered if this is normal or if it should be 100% steady throughout the day.
5. I went for a run this morning -- is it ok to exercise normally? I usually run a few times a week.
6. Finally, when I go to sleep I have no problem falling asleep (the story of my life), but I noticed that I wake up more often throughout the night. Is this normal?

Thank you all so much -- it's great to have found this forum.
-Ozwald

Edited by ozwald, 26 November 2012 - 01:42 PM.

[tabster1]

Nuvigil was the best thing that ever happened to me. I remember my dr. stressed the rash thing a lot because you can get um what is it called. steven-johnson's syndrome or something. Which can kill you so you have to call your dr right away if you get any type of rash. But if you are allergic you are most likely to have a reaction within the first month I think.

I don't drink any alcohol so I can't give you advice there. I do drink a lot of caffeinated soda though and I haven't seen a difference. I don't really know what it would do.

I know that anti-depressants can affect REM sleep. I remember my dr. said my sleep study was strange because I had an abnormally high amount of REM and anti-depressants are supposed to suppress it.


"It is well recognized that virtually all major antidepressant drugs suppress REM sleep and it has, in fact, been proposed that the clinical efficacy of these drugs largely derives from their suppressant effects on REM sleep." http://ndri.com/arti..._sleep-131.html

Just google anti-depressants and REM and a ton of results will come up.

[ozwald]

thank you *so much* for your response, tabster1! I am glad to hear the nuvigil helped you. It is helping me too. I am hopeful that I will not have the allergic reaction. Thanks also for the info on REM and antidepressants. This is super useful. When you first started the medication did you have to change your dosage at all? I am on 150, which is great, but it seems to level off in the afternoon. At any rate, thanks again! I am going to check in with my doctor today to see how it's going. Wish me luck!

Nuvigil was the best thing that ever happened to me. I remember my dr. stressed the rash thing a lot because you can get um what is it called. steven-johnson's syndrome or something. Which can kill you so you have to call your dr right away if you get any type of rash. But if you are allergic you are most likely to have a reaction within the first month I think.

I don't drink any alcohol so I can't give you advice there. I do drink a lot of caffeinated soda though and I haven't seen a difference. I don't really know what it would do.

I know that anti-depressants can affect REM sleep. I remember my dr. said my sleep study was strange because I had an abnormally high amount of REM and anti-depressants are supposed to suppress it.


"It is well recognized that virtually all major antidepressant drugs suppress REM sleep and it has, in fact, been proposed that the clinical efficacy of these drugs largely derives from their suppressant effects on REM sleep." http://ndri.com/arti..._sleep-131.html

Just google anti-depressants and REM and a ton of results will come up.

[munky]

I'm new to Nuvigil as well. My doctor had me try the 150mg first, which didn't seem to help at all. He had me try the 250mg next (I started them this past Monday night) and that seems to be doing the trick. I mean, the first few nights on it (I work graveyard shifts) were wonderful. I felt awake for the first time I can remember, and even found myself smiling for no particular reason! By the time I got home from work or school, the medicine would be wearing off, but that was okay because that's the end of my day and time to go to bed, anyway.

Thursday night wasn't as good, but I don't think I slept very well on Thursday afternoon. I have RBD, and while I don't remember whatever dreams I had, I know I was very active. When I woke up, I was practically mummified in the covers and the cats were way on the other side of the bed instead of curled up close to me. Between that and the fact I haven't quite managed to cut the caffeine completely out, Thursday night/Friday morning were rough. Still not as bad as before the medicine, mind, but I could feel that zombie fog lurking just outside, and when I got home from school after work, I could feel the fog descending. I just couldn't do anything else and fell into bed--and then had trouble getting to sleep, of course.

I haven't gotten the headaches that others have with Nuvigil--yet. I'm surprised by that, because I'm prone to headaches, anyway, so I was expecting them. But from what I've seen other people say, if you do get the headaches, just keep going because they'll go away.

The only real issue I'm having with Nuvigil is actually not with the medication itself, but with the insurance company. When I called the doc's office to tell them which strength to call in, they told me that it might actually take a few days because a lot of insurance programs require a pre-authorization for Nuvigil. And since I have really crappy prescription insurance, I'm not sure yet whether it will be covered. If it isn't, I plan to go around to the places that offer discount programs (Walgreen's, Wal-Mart, grocery store pharmacies, etc.) and see if it'd be cheaper to get the Nuvigil through them. Especially since, starting at the 1st of the year, my insurance is going to require I get all "maintenance" drugs through mail-order.

[tabster1]

Yeah she started me off on 150 but bumped it up to 250. And I also take ritalin as needed. I had massive headaches every day for a month when I first started taking it. But I stuck with it and they eventually went away. The only side effect that still gives me trouble is it suppresses my appetite. I can usually only eat a little for lunch and then a normal sized dinner. Then around 7 I get munchies really bad, I guess that's when it's completely out of my system. So I don't really eat a lot during the day but I eat a lot at night.

I was on Nuvigil for a year when they changed the approved meds in my insurance. They would only cover nuvigil if I tried provigil first and it didn't work. So then I had to switch to provigil (which didn't work) for a week before they would approve me for the Nuvigil. I was pretty mad but at least it was over the summer and not when I was in school.

[Hank]

I was on Adderall XR 30 mg, then Adderall XR + Provigil. Then Xyrem with Adderall XR 30, down to 20, down to plain Adderall 20. Recently I have felt overstimulated with no appetite. Xyrem has improved my EDS so incredibly well.


I started Nuvigil 150mg yesterday. I have not felt overstimulated, I had a good appetite. I just felt evenly well all day. I did not feel a crash when it wore off, like I have with Adderall. I had been forcing myself to stay awake until dose 1 of Xyrem at 10:15.


I don't think this would have been strong enough for me before Xyrem, but it seems to be a big improvement right now. I appreciated your posts because I was reluctant to try something new. I have had so many changes and reductions recently, and I was concerned about another change. I am glad I tried it - this is the best combination for me, so far. I am curious about the 250 mg, but will stick with 150 for a while.

[munky]

I got lucky. While Nuvigil isn't on the formulary, the prescription insurance is still going to cover it--with twice the normal copay. Still, $60 is a lot better than the $462 estimates I was seeing if you had to pay for it out of pocket!

Now I just have to figure out what hoops I'll have to jump through to actually get the medication, since my prescription insurance will require all "maintenance medications" be ordered through mail-order starting the 1st of the year. Since Nuvigil is on the FDAs schedule C2 as a controlled substance, I'll have to get a written prescription and mail it in. I don't know yet if I'll have to do that every month, or if they'll be willing to fill it 3 months at a time. It's going to suck if I have to go pick up a written prescription at the doctor's office every month and mail it in. Can't even have the doctor fax it.

Still, it'll be worth it.

--munky