11 replies to this topic

[smg08009]

I was just diagnosed with N w/C (today!) and prescribed nuvigil with ritalin as needed. I've taken ritalin previously and tolerated it well, though it made me a bit anxious and made my stomach feel...weird. I know nuvigil isn't a stimulant, but I was just wondering what I should expect in terms of side effects. I've read a lot about it causing muscle and joint pain. I'm starting at 75 mg in the morning and titrating up in about a week. Has anyone else started this gradually and still had the severe muscle pain?

Any advice would be much appreciated!

[Johnna]

I was just diagnosed with N w/C (today!) and prescribed nuvigil with ritalin as needed. I've taken ritalin previously and tolerated it well, though it made me a bit anxious and made my stomach feel...weird. I know nuvigil isn't a stimulant, but I was just wondering what I should expect in terms of side effects. I've read a lot about it causing muscle and joint pain. I'm starting at 75 mg in the morning and titrating up in about a week. Has anyone else started this gradually and still had the severe muscle pain?

Any advice would be much appreciated!

I've never taken Ritalin, but am currently on Nuvigil. I took 150 for about a year before going up to 250. The only side effect I ever had we're headaches. I hope the medicine works well for you!

[smg08009]

Thank you for your reply Johnna. I've been taking 75 mg for the past three days and the only thing I notice is extra sleepiness/difficulty focusing. I'm not sure if this is a weird paradoxal effect of the medication, or if it's just too low of a dose and I've become accustomed to the ritalin. I've also noticed a bit of dry mouth...especially when I first wake up (though this could be caused by my CPAP). I'm hoping the medication will really kick in when I reach the "steady state" on Friday.

[Stephan]

Thank you for your reply Johnna. I've been taking 75 mg for the past three days and the only thing I notice is extra sleepiness/difficulty focusing. I'm not sure if this is a weird paradoxal effect of the medication, or if it's just too low of a dose and I've become accustomed to the ritalin. I've also noticed a bit of dry mouth...especially when I first wake up (though this could be caused by my CPAP). I'm hoping the medication will really kick in when I reach the "steady state" on Friday.

I am on nuvigil since it came out. I also don't have side effects. But I did once try half a pill to save money and it seemed to make me more sleepy. I went straight to sleep after taking it. So perhaps once you're up to the full dose it will be okay.

[smg08009]

Thanks for your replies everyone! I went up to 150 mg for about a week, but there was no discernible improvement in my fatigue. I actually felt MORE tired and spacey. The dry mouth was a real pain, though I'm not sure if it was from the nuvigil or a problem with my CPAP humidifier since I only had it first thing in the morning. The last straw was when it started giving me muscle pain in my neck and shoulders. My shoulder muscles were actually swollen. Since it was my week off and I hadn't done anything but hang out on the couch I figured it was the medication. Sure enough, after skipping two doses I was back to normal. I'm meeting with my sleep doctor tomorrow to discuss controlled release ritalin and maybe xyrem (eek!). I'm starting an accelerated nursing program in two weeks, so I'm hoping to have my meds somewhat under control by then.

[Megssosleepy]

Thanks for your replies everyone! I went up to 150 mg for about a week, but there was no discernible improvement in my fatigue. I actually felt MORE tired and spacey. The dry mouth was a real pain, though I'm not sure if it was from the nuvigil or a problem with my CPAP humidifier since I only had it first thing in the morning. The last straw was when it started giving me muscle pain in my neck and shoulders. My shoulder muscles were actually swollen. Since it was my week off and I hadn't done anything but hang out on the couch I figured it was the medication. Sure enough, after skipping two doses I was back to normal. I'm meeting with my sleep doctor tomorrow to discuss controlled release ritalin and maybe xyrem (eek!). I'm starting an accelerated nursing program in two weeks, so I'm hoping to have my meds somewhat under control by then.

Dry mouth is definitely from the meds all well as being sore. I have had a really hard time with everything that Ive tried. Nuvig was def. the worse!! I must say despite the Roller coaster of side effects I LOVE Xyrem!! Just picture sleeping though the night, and being able to wake up in the am without wanting to cry cuz you just want to sleep longer! I still have my C and EDS, but just the fact that I am not waking 20+ times a night is AMAZING!! I have noticed my mood has started to improve as well??? And I have always been depressed and grumpy so that in its self make my sleepyness more bearable. Also, I take a low dose of Adderall as needed, I tried the XR but I prefer to have complete control. So I can take 3 or somedays just one so I don't fall asleep on my way into work.
Don't be scared of the Xyrem... I was and made the first night hell... just relax think happy thoughts and drift off to sleep! Its not scary at all, now I just feel warm and light

[smg08009]

Megssosleepy, thank you so so much for your replies about the xyrem. I know it's probably my best option, and I probably need it to get the cataplexy in my hands under control before I start clinicals, but the possibility of throwing up terrifies me. My doctor wants to start me at 2.25 mg 2x/night and I trust him more than any other doctor I've seen, but 2.25 seems like a lot. I'm very petite (5'1" 95lbs) and sensitive to drugs. My sister will be starting xyrem with me, so at least I'll have someone to commiserate with. My doctor said daytime meds aren't his forte, but he wrote me an RX for 10 mg focalin xr to tide me over until I start the xyrem...though I'll probably just stick with the plain old ritalin for better control. Keep your fingers crossed for me!!!

[Hank]

Megssosleepy, thank you so so much for your replies about the xyrem. I know it's probably my best option, and I probably need it to get the cataplexy in my hands under control before I start clinicals, but the possibility of throwing up terrifies me. My doctor wants to start me at 2.25 mg 2x/night and I trust him more than any other doctor I've seen, but 2.25 seems like a lot. I'm very petite (5'1" 95lbs) and sensitive to drugs. My sister will be starting xyrem with me, so at least I'll have someone to commiserate with. My doctor said daytime meds aren't his forte, but he wrote me an RX for 10 mg focalin xr to tide me over until I start the xyrem...though I'll probably just stick with the plain old ritalin for better control. Keep your fingers crossed for me!!!

I am now halfway through week 4 on Xyrem on 3.0g x 2. I also started on 2.25 x 2. I am getting 8 hrs of restful sleep and only wake up for the pillow alarm for dose 2. I feel better during the day than I recall in my life. I catch myself in extended periods of focus and concentration. I am interested to know what "well" is like since I seem to be unfamiliar with well. I was concerned about the side effects like vomiting and bedwetting- hasn't happened yet. I was also concerned I would be comatose, but I can wake up if needed. I take Adderall xr 30 mg which I find to be very even throughout the day. I went without Adderall Sunday for a "holiday" and I was ok but just ok. I am beginning to feel a great sense of relief about my future. It was getting too hard to keep pushing myself so hard. C is beginning to diminish thankfully. I seem to have reached a milestone I did not know was possible for me. I stop food 3 hrs before Xyrem and that is better than 2 hrs for me. I hope you start feeling some relief soon- we live with a heavy load and it certainly feels lighter for me recently.

[SleepyRaffie]

I too am terrified of vomiting. Have been since I was little. I am currently on Xyrem 3g 2X per night and I have not even felt remotely sick. If I sit up it makes my head spin, but I just don't sit up. I have really had only very mild side effects. The Xyrem nurse said that everyone metabolizes the medication differently and that it has nothing to do with body weight. I am sure they will give you the same speech as they have a very specific way they do things there. I am also sensitive to many drugs especially things that make you sleepy. I totally expected to fall asleep within seconds, but I am actually awake a bit longer than before I started it. Oh well.

[Megssosleepy]

Megssosleepy, thank you so so much for your replies about the xyrem. I know it's probably my best option, and I probably need it to get the cataplexy in my hands under control before I start clinicals, but the possibility of throwing up terrifies me. My doctor wants to start me at 2.25 mg 2x/night and I trust him more than any other doctor I've seen, but 2.25 seems like a lot. I'm very petite (5'1" 95lbs) and sensitive to drugs. My sister will be starting xyrem with me, so at least I'll have someone to commiserate with. My doctor said daytime meds aren't his forte, but he wrote me an RX for 10 mg focalin xr to tide me over until I start the xyrem...though I'll probably just stick with the plain old ritalin for better control. Keep your fingers crossed for me!!!

That seems to be the standard low dose that everyone starts with. Its not a lot at all. I stayed there for about a week and am now on 3.0 2x This dose has kept asleep longer but I will most likely still need a bit more.
Just some advise... DO NOT FREAK OUT!! thats what I did and made the first night nuts. I didnt know what to expect and when I didnt drift off to sleep I panicked. Take your dose, turn out the light and expect it to take around 15mins try to just think about a movie you just saw or something along those lines, don't think about the Xyrem, I noticed shallow breathing (how we breath when we are asleep) and that scared me... but that's normal just go with it... just relax and think happy thoughts and you should be good to go! Going in worried made my night unpleasant... but the second night I relaxed and drifted off to sleep nicely. I Have not experience any nausea at all... Although Ive had some rough GI problems. I normally wake with a little headache and take 2 Alive before heading into the shower and its gone by the time Im off to work. So this is my advise!! I am so so so happy I am on Xyrem, Its crazy Yesterday I was clear headed and actually happy! Today Im pretty foggy and glum... but having that good day, I realize there are more in store for me!

[Megssosleepy]

I too am terrified of vomiting. Have been since I was little. I am currently on Xyrem 3g 2X per night and I have not even felt remotely sick. If I sit up it makes my head spin, but I just don't sit up. I have really had only very mild side effects. The Xyrem nurse said that everyone metabolizes the medication differently and that it has nothing to do with body weight. I am sure they will give you the same speech as they have a very specific way they do things there. I am also sensitive to many drugs especially things that make you sleepy. I totally expected to fall asleep within seconds, but I am actually awake a bit longer than before I started it. Oh well.

I am actually awake longer and wake up easier in the morning! Before my alarm goes off!! its kindof annoying... trying to tweak the times to see if I can get my internal clock to be closer to my alarm clock. I find it odd that when I do wake 2 hours before I need to get up, I actually feel like I should just get up... where before being on any meds Id wake up all the time and NEVER EVER want to get out of bed!

[Fluffybunny5000]

Thank you for your reply Johnna. I've been taking 75 mg for the past three days and the only thing I notice is extra sleepiness/difficulty focusing. I'm not sure if this is a weird paradoxal effect of the medication, or if it's just too low of a dose and I've become accustomed to the ritalin. I've also noticed a bit of dry mouth...especially when I first wake up (though this could be caused by my CPAP). I'm hoping the medication will really kick in when I reach the "steady state" on Friday.

I've been on nuvigil for a year... a few tips.. #1.. do NOT stop taking this.. taper off.. you will have a narcolepsy hell ride if you do.. #2 give it time! it takes a few weeks for it to even out.. after wards its your saving grace.. my main side effect was lack of appitite and i've lost 78 pounds.. i call this a blessing lol. I usually take it first thing in the morning then i go back to bed (i work nights) and wake up in an hour or 2 and wake up feeling great!