35 replies to this topic

[munky]

At least I'm not along in my Nuvigil experience. It gives me headaches, too, but not all the time. I still feel like it's not worth taking, though. Blah.

 

Here's how my primary care doctor explained the Nuvigil headaches:

 

"Nuvigil is a CNS [Central Nervous System] active drug, which means that it crosses the blood-brain barrier. Now, while your brain might like the results of the Nuvigil, it does not like things crossing that barrier, thus the headaches. However, if you can push through them, keep taking the medication for a month or so, your brain will get used to that particular chemical crossing the barrier and the headaches will stop."

 

The timing would likely be different in your case. I only take my meds on the days when I'm working, unless I have something else to do on a day off for which I need to be sure I'm fully awake. Since I work a 12-hour shift, that means I'm only taking the meds 3 days one week and 4 the next, with the possibility of taking them on other days--like when I start building my deck and will be using power tools. Or when the rain and meltwater go down enough for me to start storm cleanup and I'll be wandering around with a chainsaw. Unmedicated narcoleptic with a chainsaw? Bad idea!

 

I also have a fairly high pain tolerance. I've had arthritis since I was six, so I've been in some kind of pain pretty much every day of my life. Heck, I was told by an orthopedic surgeon once that, despite the nerve conduction test that showed definite carpal tunnel syndrome in my right wrist, I couldn't possibly actually have it because I wasn't "in enough pain." I should be "unable to so much as hold a pen" (I'm right handed). A headache has to be pretty bad to actually impact my daily life--and by "pretty bad," I mean getting close to migraine-level pain. So, there again it may be different for you. I hardly notice the Nuvigil headaches ... but I have noticed that I'm having fewer of them, so I think I'm finally getting through that adjustment.

[wisher]

From my short experience with Provigil/Nuvigil I can tell you that if you don't feel like you are 85% awake on it then it's not working for you. Especially if you are getting side effects. I've noticed that it doesnt remove my EDS and I can recognize when i'm having a sleep attack, but it passes within minutes and I can refocus on my tasks. So far it's only been effective in the 5 hour period after I take it. After that my EDS symptoms come back hard and I end up napping for the rest of my classes. 

 

Interesting. I don't think I've ever had a sleep attack that passed within minutes! Although sometimes, while on Nuvigil, if I get the chance to take a nap, sometimes I'll be awakened after only a few minutes and then I feel alert enough to stay awake. Other times I'm still sleepy though.

 

At first Nuvigil worked great for me, but after a couple of days I was back to being sleepy. Now, like you, it works for the first few hours after I take it. Then the sleepiness hits. I basically just have to force myself to stay awake at work, and it has been especially hard lately. Then, I get headaches on top of it. Maybe it's tiem for me to try something different.

[wisher]

Here's how my primary care doctor explained the Nuvigil headaches:

 

"Nuvigil is a CNS [Central Nervous System] active drug, which means that it crosses the blood-brain barrier. Now, while your brain might like the results of the Nuvigil, it does not like things crossing that barrier, thus the headaches. However, if you can push through them, keep taking the medication for a month or so, your brain will get used to that particular chemical crossing the barrier and the headaches will stop."

 

That makes sense, and that's usually the way I treat side effects from new medications. My current problem is a bit weird though. I've basically been getting migraines, and the only thing that helps my migraines is Excedrin. Excedrin has caffeine in it, which I really cannot have when I'm on Nuvigil. So, I'm kind of stuck dealing with one issue or another. Either I try to suffer through the headache (which was a disaster for me yesterday), or I treat it with Excedrin and deal with the horrible jittery anxiety and increased heartrate due to the Nuvigil/caffeine combo.

 

Hmph. Xyrem is looking more and more comfortable. =/

[2Tired4This]

The naps definitely help when I get an attack on Nuvigil, but the whole process is just very inconvenient. Especially for someone like me who is is in a school setting most of the day and w/o a proper place to nap.  I think that the Nuvigil makes me nap longer after school though. Right after my last post I took a nap and didn

't wake up until now (7 hrs later) Usually my post-school naps dont last that long. 

 

I read in another post about dealing with Narcolepsy the 2 criteria you need to fill in order to be productive/sucsessfull.

1: You need reasonable time to be able to complete your tasks. (You need to be awake.) 

2: You need to be able to utilize the time properly with your full abilities. (In other words. If you are awake but unable to concentrate/function due to EDS or Cataplexy then your time is wasted and you might as well have stayed asleep. In the same sense if your headaches or jittery anxiety are impeding your ability to complete your tasks then the medication basically defeats its own purpose.

 

 

 

Easy Summary you ask?

 

Q = Cons of Current Drugs and Lifestyle Changes

X = Pros of Current Drugs and Lifestyle Changes

Y = Current amount of happiness/satisfaction with life. 

Z = Desired amount of happiness/satisfaction with life

D = Drug

 

(X-Q) Is the function of (D) drug

 

If Z <  Y + D

(If desired goal is not reached by adding drugs into your lifestyle.)

 

then the variable D must be changed. (Switching to a new stimulant, changing dosage, going back on Xyrem, etc.)

Everyone has a different Z value and a different Y value, however both are rather independent of the rest of the variables and can not be modified at will in this equation. 

 

It's important to acknowledge Z as your desired lifestyle and ideal happiness instead of thinking of Z as D only solving a Symptom. 

 

No idea if this helps anyone but I find that it just makes it a bit easier for me to decide what's working for me or not. 

[wisher]

It's important to acknowledge Z as your desired lifestyle and ideal happiness instead of thinking of Z as D only solving a Symptom. 

 

No idea if this helps anyone but I find that it just makes it a bit easier for me to decide what's working for me or not. 

 

Yes, that is really helpful. Thank you!!!

[munky]

 Excedrin has caffeine in it, which I really cannot have when I'm on Nuvigil. So, I'm kind of stuck dealing with one issue or another. Either I try to suffer through the headache (which was a disaster for me yesterday), or I treat it with Excedrin and deal with the horrible jittery anxiety and increased heartrate due to the Nuvigil/caffeine combo.

 

Why can't you have caffeine while you're on Nuvigil?

 

I actually tried to cut out caffeine at the same time as starting the Nuvigil, and had 3 migraines in a week. Don't normally get that many in an entire year. So, I thought the withdrawal headaches and Nuvigil headaches were combining. Started drinking caffeine again, and no more migraines. When I talked to my PCP, and she gave me the explanation I mentioned a few posts back, she also said that I should wait until the Nuvigil headaches stop before trying to cut the caffeine again, and then do it very slowly. My caffeine comes in the form of sodas, so she said to drop 1 soda from my daily intake for a couple of weeks, then drop another for 2 weeks, and so on until I was off it entirely. At this point, I just make sure I don't have any within a couple hours of going to bed.

 

And in a lot of my reading, I've found several mentions of people still having their morning caffeine fix (coffee, tea, soda, whatever) while they wait for the Nuvigil (or other stimulant) to take effect.

[wisher]

Why can't you have caffeine while you're on Nuvigil?

 

I actually tried to cut out caffeine at the same time as starting the Nuvigil, and had 3 migraines in a week. Don't normally get that many in an entire year. So, I thought the withdrawal headaches and Nuvigil headaches were combining. Started drinking caffeine again, and no more migraines. When I talked to my PCP, and she gave me the explanation I mentioned a few posts back, she also said that I should wait until the Nuvigil headaches stop before trying to cut the caffeine again, and then do it very slowly. My caffeine comes in the form of sodas, so she said to drop 1 soda from my daily intake for a couple of weeks, then drop another for 2 weeks, and so on until I was off it entirely. At this point, I just make sure I don't have any within a couple hours of going to bed.

 

And in a lot of my reading, I've found several mentions of people still having their morning caffeine fix (coffee, tea, soda, whatever) while they wait for the Nuvigil (or other stimulant) to take effect.

 

I can't have caffeine with the Nuvigil because it makes me feel awful. My heart races and my body feels anxious and jittery and shaky, etc. I feel like I'm super nervous for no reason. I really hate it.

 

Trust me, I would love to have my morning coffee, but that is the worst thing for me to do with Nuvigil. I take Nuvigil when I wake up, and by the time I get to work (about an hour later), I really don't need caffeine because I actually feel awake for a while. But after a couple of hours I'm sleepy again. Occasionally I've had a soda or something midday when I'm desperate to stay awake, but then the caffeiene doesn't even help, lol.

 

In addition, since Nuvigl also makes it difficult for me to fall asleep at bedtime, the caffeine will just make it worse.

[MissRae]

I've been taking Nuvigil for about 15 months now. It helps me a lot and the times it doesn't, I've noticed it's because I've taken it later in the day, didn't get much sleep, or I was extremely active / emotional that day. I get up in the mornings about 5:00 am, and I usually take the medicine by 5:45. For me, I have to take it before 9:00 usually. When I take it on time, it normally drops off about 10:00 and I can get to sleep fairly easily. When I can't sleep, I usually just feel like my brain won't shut off and I work on a puzzle book or play a game on my phone until I run it down and get sleepy. 

 

As for emotional side effects, I've been taking St. Johns Wort, which is recommended for those who deal with Depression. I noticed a few months ago that I was having issues feeling depressed, and also agitated. The depression is normal for me, but I've never really had issues with anger. The St. John's Wort seems to help with both of those a bit. 

 

I've noticed the same thing about Caffeine. Also, I'm having to now really avoid Sugar during the day because it makes me crash HARD. 

 

Hopefully some of this may help for you. I don't know if you have but maybe try talking to your doctor about some of the side effects of the Nuvigil and see if there is something, even natural supplement wise, that may be able to help with some of it. 

[munky]

I can't have caffeine with the Nuvigil because it makes me feel awful. My heart races and my body feels anxious and jittery and shaky, etc. I feel like I'm super nervous for no reason. I really hate it.
 

Ah, that explains it. I don have that problem, thankfully. It could be that Nuvigil just isn't the right thing for you. Sounds like you should talk to your doctor.

[LauraL]

The problem is that the Nuvigil is keeping me from falling asleep at bedtime.

 

So now I'm wondering what the point of taking Nuvigil is. WIthout the Nuvigil, I take naps during the day, but I have no trouble falling asleep at bedtime. On Nuvigil, I still have to take a nap during the day, and then I can't fall asleep at bedtime. If the whole point of Nuvigil is to stave off the EDS, then it just kinda seems like a wasted effort, and it's creating more problems than it solves.

 

I had headaches, some irritability/anxiety, and difficulty falling asleep when I started Nuvigil.  These side effects lessened after a couple of weeks, and went away completely after a month or two.  Give it some time.

 

Nuvigil worked really well for me for several months, but more recently I've stopped responding to it.  So now I take... nothing.  I just got a referral to see the head of sleep neurology at the local university medical center.  We'll see if he can help me figure something else out!

[MINItron]

I had headaches, some irritability/anxiety, and difficulty falling asleep when I started Nuvigil.  These side effects lessened after a couple of weeks, and went away completely after a month or two.  Give it some time.

 

Nuvigil worked really well for me for several months, but more recently I've stopped responding to it.  So now I take... nothing.  I just got a referral to see the head of sleep neurology at the local university medical center.  We'll see if he can help me figure something else out!

 

Did you ever try a med holiday where you stopped taking the Nuvigil for a couple days, and then went back to it? It seems that a lot of people have to do that with their stimulants.

[wisher]

Did you ever try a med holiday where you stopped taking the Nuvigil for a couple days, and then went back to it? It seems that a lot of people have to do that with their stimulants.

 

That is actually what I do every week. I only take it on weekdays when I wake up early enough to take it. On Saturdays and Sundays I skip it. Although it's interesting that you bring this up because I was just wondering if other people do that too.

[wisher]

I had headaches, some irritability/anxiety, and difficulty falling asleep when I started Nuvigil.  These side effects lessened after a couple of weeks, and went away completely after a month or two.  Give it some time.

 

Nuvigil worked really well for me for several months, but more recently I've stopped responding to it.  So now I take... nothing.  I just got a referral to see the head of sleep neurology at the local university medical center.  We'll see if he can help me figure something else out!

 

Hmmm. Yeah, it's only been about a month for me (unless you count the 2 weeks of samples I used before my holiday break, in which I did not take it for a few weeks). I'm trying to give it more time. I have an appointment with my sleep doctor next week, so we'll see what he suggests.

[munky]

That is actually what I do every week. I only take it on weekdays when I wake up early enough to take it. On Saturdays and Sundays I skip it. Although it's interesting that you bring this up because I was just wondering if other people do that too.

 

My neurologist actually suggested that I skip taking the Nuvigil on days I don't have to work, and that's exactly what I do. Although there are exceptions. For instance, if I'm going to be working with power tools on my day off, I'll take the Nuvigil. An unmedicated narcoleptic with a chain saw or nail gun just ... doesn't seem like a good idea.

[2Tired4This]

Summary: Provigil actually decreased my efficiency throughout the day and my current doctor's solution was to up my dosage by adding in another 200mg at lunch. For reasons specified below I don't like my doctor. He's not unprofessional, however as he is a psychologist I feel as if he treats me more as a nutcase rather than a rational and logical human being who is more than enough responsible for myself. I feel like i'm going nuts in this constant battle against myself as I try to do be a good student and fight off the constant waves of fatigue and lethargy.  

 

 

 

 

 

Since my last post about being on Provigil things have gotten a lot worse. I had always done the whole weekend med vacation thing from day 1 in consideration of the fact that I never liked taking medicine to begin with. What I have documented is that the first day back on the meds is usually great but every following day is accompanied by 1-2 hours of wakefullness followed by returned EDS afterwards. Around 7 hours after taking the meds I would experience an extreme crash and sleep attack unlike any I had experienced b4 meds. The resulting sleep attack would end up making me take a 5 hour nap usually from 3:00 to 8:00. Then I would be up until 12:00 scrambling to finish homework and such before school starts at 6:00.

 

So with all of these factors added together what have I gained since starting Provigil? 

 

Nothing. In fact I have lost productiveness due to the fact that I can't get my homework done until later at night. These late night homework scrambles mean I only get 5 hours of night time sleep at best with increased sleepiness during the day. So while i do experience increased productiveness while i'm sitting in a desk in a classroom, in no other way has my current treatment  options increased my efficiency. I'm doing worse than when I was falling asleep in class because now I have perfect knowledge of the lesson but no time to do my homework haha. 

 

 

Had a 2nd appointment with the psychologist that I was referred to from my Sleep Specialist who ordered the MSLT and gave me by diagnosis of N, but I think I have decided to go with a different doctor. The old, overweight, and unfriendly oaf of an MD told me to try and "limit my naps" to 90 minutes so I could have better night time sleep. And also told me to start taking another 200mg of modafinil at noon. I also explained to him that I can't afford another $650 Rx for 30x 200mg modafinil. The new regimen he is suggesting would cost over $1200 a month. I might as well have not even mentioned it to him as he disregarded everything I said and told me to come back in 4 weeks with my mother so she and him could discuss MY treatment options. =/ while I do understand the importance of having a guardian present while deciding new Rxes for a minor I would appreciate having a preliminary  discussion with him while we had the chance, considering I don't have 4 more weeks to fool around and mess up my Junior year's grades. 

[DeathRabbit]

I would recommend limiting the naps too, I guess, as much as you dont want to hear that. Naps that long will just trash your sleep architecture further, so while they may work at the time, it's just going to make you even sleepier the next day. But yeah, if the meds aint working dont take them. There's no reason to pay hundreds of dollars just to poison yourself.