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Having Trouble With Treatments

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I was on Xyrem for a year and a half, and it was like a miracle drug for a long time. Cataplexy was greatly reduced, I was able to stay awake during the day, and I slept beautifully at night. It even helped me lose weight!

 

It wasn't until I lost TOO much weight and had a lot of trouble gaining it back, that I wanted to stop taking it. Long story short, my doctor is running a clinical trial for a new narcolepsy+cataplexy drug, and he suggested I would be a good candidate. In order to join it, I had to be off of Xyrem for a month, then take a special sleep study. Well, after all that, I didn't qualify for the trial.

 

At that point, I did not want to go back on Xyrem. I realized during my month of no drugs that I felt SO much better without the Xyrem - that is, mentally and emotionally. I didn't realize that it was the Xyrem causing me to be so irritable and boring. But after stopping it, I got my passion back! My creative muse(s) returned, my sex drive came back, and I generally felt alive (aside from the EDS returning) -- and like MYSELF -- again.

 

So... my doctor suggested that I try Nuvigil instead of Xyrem.

 

I take it first thing in the morning, on an empty stomach. Often, I still get very sleepy during the day, but by bedtime, I can't fall asleep! Now I'm in this cycle where I get 5-7 hours of sleep at night, then take a nap when I get home from work, then can't fall asleep until late that night again...

 

Has anyone else had this experience? I'm not sure what to do about it now, but it's making me question everything. Am I napping because of the narcolepsy, or am I napping because I didn't get enough sleep last night? It seemed so much easier on Xyrem, and I'm tempted to go back to it, but I don't want to lose my passion and my ME-ness again. :(

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I take Nuvigil, myself. Take it when I wake up in the late afternoon/early evening (I work nights) with my dinner. Then at work, I have a scheduled 20-minute nap every 4 hours. I also try to get at least 7 hours of sleep every day. That's all part of the treatment recommended by my neurologist.

 

I'm no doctor, but it's my understanding that the Nuvigil helps with the EDS, but that naps might still be required, for certain people. Alas, Narcolepsy is one of those things where an effective treatment is going to be different for everyone, and sometimes involve both medication and behavioral adaptations (i.e. naps).

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It often seems that the side effects of Xyrem gorw with time. I wonder if it might be effective, if after one has been on the high dosage for a long while, to actually step it down to a slightly lower doses. There are some medications that become more powerful over time instead of less and perhaps Xyrem does this to some people.

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I take Nuvigil, myself. Take it when I wake up in the late afternoon/early evening (I work nights) with my dinner. Then at work, I have a scheduled 20-minute nap every 4 hours. I also try to get at least 7 hours of sleep every day. That's all part of the treatment recommended by my neurologist.

 

I'm no doctor, but it's my understanding that the Nuvigil helps with the EDS, but that naps might still be required, for certain people. Alas, Narcolepsy is one of those things where an effective treatment is going to be different for everyone, and sometimes involve both medication and behavioral adaptations (i.e. naps).

 

See, really, my problem isn't with the naps, although I can see now that perhaps I didn't write my inital post accordingly.

 

If I'm not on medication, I'm going to be taking naps. While on the Nuvigil, I am taking naps.

 

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.

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It often seems that the side effects of Xyrem gorw with time. I wonder if it might be effective, if after one has been on the high dosage for a long while, to actually step it down to a slightly lower doses. There are some medications that become more powerful over time instead of less and perhaps Xyrem does this to some people.

 

You know, I did try this. I was taking 3.75g for a long time, and the weight loss was just too much. So my doctor stepped me back down to 3g, and while it did help with the weight problem, it just wasn't effective enough to keep me awake during the day. :(

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Maybe 3.5 then? I've been having trouble finding my ideal mix too. It's pretty discouraging that I've yet to see a significant improve or at least one that isn't pared by severe side effects since I started this stuff a month and a half ago.

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Maybe 3.5 then? I've been having trouble finding my ideal mix too. It's pretty discouraging that I've yet to see a significant improve or at least one that isn't pared by severe side effects since I started this stuff a month and a half ago.

 

Perhaps. My other issue with the Xyrem was how it affected my mental/emotional state, and I'd rather not go back to that medication if I can help it.

 

As for you... give it time. A month and a half seems like a long time, but with Xyrem I learned that it can take months to figure out the balance that works best. :)

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Perhaps. My other issue with the Xyrem was how it affected my mental/emotional state, and I'd rather not go back to that medication if I can help it.

 

As for you... give it time. A month and a half seems like a long time, but with Xyrem I learned that it can take months to figure out the balance that works best. :)

 

Yes def takes much longer then a month.  I feel like although Xyrem has given me clear moments throughout the day and it took away my depression that I had for 10 years or so... I do kindof feel Blah... but that could be the dreary winter, or the fact I was busy with work and school and now that I graduated I have more time to be blah.

 

One thing I have started doing (only two weeks now) I am not sure if its a good idea or not, but I dont take Xyrem on Saturday nights... this way I can have a couple of drinks hang out late eat food late ect... I was happy to find I was able to fall asleep pretty fast and havent had SP/HH yet.  Sundays are lazy days where I try to eat a ton and nap and relax.  Its crazy how much more I can eat when having not taken Xyrem.

 

I have found the only way to keep/gain weight is weight gain shakes with whole milk.  They add about 1000 calories to my day.  If I stop drinking them I loose everything I gained :( I am happy to say I went from a yuck 100LBS to a better but still not great 105! I will be happy at 110! (im only 5'1.5 :)

 

One more thing to add to this scattered post...

 

The moments of clarity are so strange to me, and as soon as I realize it is upon me it can bring tears to my eyes... feeling the fog completely lifted! To not feel the slight bit tired, they may only last 10, 15, 20 min, ahhh it makes all the BS of Xyrem worth it! 

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Yes def takes much longer then a month.  I feel like although Xyrem has given me clear moments throughout the day and it took away my depression that I had for 10 years or so... I do kindof feel Blah... but that could be the dreary winter, or the fact I was busy with work and school and now that I graduated I have more time to be blah.

 

One thing I have started doing (only two weeks now) I am not sure if its a good idea or not, but I dont take Xyrem on Saturday nights... this way I can have a couple of drinks hang out late eat food late ect... I was happy to find I was able to fall asleep pretty fast and havent had SP/HH yet.  Sundays are lazy days where I try to eat a ton and nap and relax.  Its crazy how much more I can eat when having not taken Xyrem.

 

I have found the only way to keep/gain weight is weight gain shakes with whole milk.  They add about 1000 calories to my day.  If I stop drinking them I loose everything I gained :( I am happy to say I went from a yuck 100LBS to a better but still not great 105! I will be happy at 110! (im only 5'1.5 :)

 

One more thing to add to this scattered post...

 

The moments of clarity are so strange to me, and as soon as I realize it is upon me it can bring tears to my eyes... feeling the fog completely lifted! To not feel the slight bit tired, they may only last 10, 15, 20 min, ahhh it makes all the BS of Xyrem worth it! 

 

I don't blame you, about not taking it on Saturday nights so you can drink! I definitely did that occasionally. Eventually, I just started making sure that I stopped drinking 4-6 hours before I took my first dose of Xyrem (as recommended by the Xyrem nurse staff), and it worked great for me. Of course, it was still kinda like I was the party pooper. "Oh, it's 9:00, time for me to stop drinking!" Hehe...

 

I agree with you about the weight gain shakes. I tried those for a long time, and I tried to eat a lot, too. Basically, they did help me gain back about 7 pounds, but you're right... as soon as I stopped drinking them on a regular basis, the weight just came right back off!

 

Yes, those moments of clarity are awesome. It's amazing how much I forgot what life was like before Xyrem, until I stopped taking it. Now I'm in a fog so much of the time, I hate it. I'm starting to feel the desperation all over again, especially since this Nuvigil just doesn't seem to be working for me.

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Have you asked the doctor about combining the Xyrem with an antidepressant?  I know it stinks to have to take add another medication to treat side-effects from another, but if Xyrem was effective, it might be a way to get back on it without having the mood changes.  I'm battling the weight loss now and have started to notice myself being...less happy, I suppose.  I am under a lot of stress lately, so it could be that, but my doctor did say we can talk about adding something like Effexor if it doesn't stop.

 

I tried Nuvigil first and hated it.  It kept me up at night, too, but I still fell asleep during the day.  It made absolutely no sense whatsoever.  That drug made me seriously irritable and gave me such bad headaches.  I was happy to stop taking it.

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See, really, my problem isn't with the naps, although I can see now that perhaps I didn't write my inital post accordingly.

 

The problem is more likely to be that I misunderstood it. I've been very bad about taking my naps--I just don't want to do it, despite the fact that I know there will be issues if I don't. Like this one. :blush:

 

If I'm not on medication, I'm going to be taking naps. While on the Nuvigil, I am taking naps.

 

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 can't say the Nuvigil is keeping me from falling asleep. I was an insomniac all my life, up until the narcolepsy. It would take me 30 minutes or more just to fall asleep, and if I got four straight hours of sleep--meaning that when I woke up, I was able to get back to sleep within 10 minutes--it was a good day. Five hours meant I was coming down with something. More than that meant I was sick and/or drugged. More commonly, I'd sleep for about an hour, wake up and be unable to get back to sleep for another hour or more, then sleep for another hour or two ... lather, rinse, repeat. Now, when I go to bed, I fall asleep very quickly, and I usually manage to sleep all the way through to my alarm--again, meaning that when I wake up, I fall asleep again within a few minutes--but there are days when I'll wake up after four or five hours, and there's just no going back to sleep.

 

My best suggestion would be to echo advice you've already gotten and say talk it over with your doctor. Maybe s/he will have some other suggestion that will work better for you, such as the one Meg suggested.

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Have you asked the doctor about combining the Xyrem with an antidepressant?  I know it stinks to have to take add another medication to treat side-effects from another, but if Xyrem was effective, it might be a way to get back on it without having the mood changes.  I'm battling the weight loss now and have started to notice myself being...less happy, I suppose.  I am under a lot of stress lately, so it could be that, but my doctor did say we can talk about adding something like Effexor if it doesn't stop.

 

I tried Nuvigil first and hated it.  It kept me up at night, too, but I still fell asleep during the day.  It made absolutely no sense whatsoever.  That drug made me seriously irritable and gave me such bad headaches.  I was happy to stop taking it.

 

My doctor did mention the possibility of an antidepressant, but I've been resistant. Like you said, I don't want to add more meds to the mix unless I absolutely have to. In addition, with the Xyrem already affecting my mental/emotional state so much, I don't want to combine that with an antidepressant. I've so often herd that antidepressants don't make the depression go away, they just make people feel numb, as if they no longer have emotions. That's kind of the experience I already got from Xyrem, so I'm not sure how adding an antidepressant would help.

 

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.

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My best suggestion would be to echo advice you've already gotten and say talk it over with your doctor. Maybe s/he will have some other suggestion that will work better for you, such as the one Meg suggested.

 

Yeah, I'll definitely be talking to my doctor about it at my next appointment. It just seems like he's running out of suggestions to give me. At least based on my last appointment (which happened after I had 2 weeks of Nuvigil samples). We'll see. :)

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I think with the Nuvigil, the numbness won't be such an issue. But take them at night before bed, because almost all tricyclics, SSRIs, and teracyclics have a mild sedative ffect.

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I think with the Nuvigil, the numbness won't be such an issue. But take them at night before bed, because almost all tricyclics, SSRIs, and teracyclics have a mild sedative ffect.

 

Hmm, interesting. Actually, for combination with Nuvigil, my doctor suggested some drug called Strattera. He actually gave me a prescription for it, but I didn't get it filled yet. I didn't want to add more drugs to my daily cocktail, plus it was expensive. Hrm...

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I want to say someone else on here had experience with Strattera, but I'm not sure. Wiki says it's for hyperactivity. Strange thing to give a narcoleptic, but perhaps it's to cut the side effects of the Nuvigil.

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I want to say someone else on here had experience with Strattera, but I'm not sure. Wiki says it's for hyperactivity. Strange thing to give a narcoleptic, but perhaps it's to cut the side effects of the Nuvigil.

 

Yeah, my doctor told me it would help a little bit with the EDS and the cataplexy. I looked it up when I got home and saw that it was for people with ADHD and was confused. Whatever the case, I haven't tried it. Not sure if I will.

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Hmm, interesting. Actually, for combination with Nuvigil, my doctor suggested some drug called Strattera. He actually gave me a prescription for it, but I didn't get it filled yet. I didn't want to add more drugs to my daily cocktail, plus it was expensive. Hrm...

 

Strattera is a norepinephrine reuptake inhibitor where Ritalin is a norepinephrine-dopamine reuptake inhibitor. Many of the drugs that are used for narcolepsy are primarily used for ADHD, so it isn't that far of a stretch that it could be of some use as an adjunct to Nuvigil.

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While antidepressants do often cause sedation, sometimes, particularly SSRIs and SNRIs, they can be quite activating, and cause sleeplessness in some people. Often it is a matter of trial and error, to work out the best time to take it, depending on an individual's response.

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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. 

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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.

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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.

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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. =/

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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. 

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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!!!

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