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Not Sure If Nuvigil Is Helping Or Making It Worse

Nuvigil insomnia sleep hygiene

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#1 NightinPhilly

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Posted 03 December 2013 - 12:18 AM

Hi everyone, I will preface this by saying I know I likely need to be a bit more patient but I'm a bit perplexed / confused by my experience so far with Nuvigil. I've been on it for ~5 weeks with a 10 day break because I got really sick (bronchitis, severe upper respiratory infection, ear infections) a few weeks in; I think I made this worse because I assumed I was just tired and that was my 'normal.' Anyway, I've been observing some things and I was hoping some of you might be able to shed some light on whether I'm off-base with my observations. 

 

1) I think it's making my insomnia worse: I always had trouble getting to / staying asleep; before my diagnosis I just thought I had really poor sleep hygiene and was a bad sleeper, etc. I know I need to have more discipline around starting good sleep habits. But I think Nuvigil is making my insomnia worse - I've read in various posts, sites that it should take ~12-15 hours for it to exit my system. I try to take it before 8AM but I'm still having trouble "running out of steam" before midnight or later. I'm only on 150mg and I did do a ramp up from 75mg. AND I still get up so many times during the night too - even more so if I have a nightmare, it takes me so long to calm down even though I know it wasn't real. I feel like I'm not getting any more sleep and then the Nuvigil just keeps me going through the motions during the day.

 

2) I'm still tired / foggy: So even though my mind doesn't start winding down later, I'm still really tired and have slumps throughout the day. It's frustrating because I can't really nap at work and when I get home I'm afraid if I try to nap I will be awake even later when I need to sleep. I've also been MORE forgetful / spacey than I was before I started taking it. I forget what I'm saying mid-sentence, forget what questions I responded to even 30 seconds before. I've even forgotten things that I've known for years (like my ATM pin).  <_<

 

3) I get really tense / jittery: I've dialed down my caffeine intake a lot because I think the Nuvigil makes me really tense - actually, I'd say it makes it harder for me to manage how I respond to stress / anger / frustration. The tension is not just emotional - my neck and back are so tense sometimes it hurts to sit at dinner and I've gotten random shoulder spasms because my neck got so tense. Another challenge is that I'll get really jittery / shaky during one of these episodes and then I feel like I crash. A stressful situation early in the work day can knock out my energy for the rest of the day as if I didn't even take Nuvigil. I feel like a deflated balloon. 

 

4) I forget to eat: So appetite suppressant is an understatement - I forget to eat, I don't really feel like eating, I lose interest in eating, I lose my appetite early in a meal. I realize some of the jitters could be caused by forgetting to eat so I try to be aware of this and remember to eat. But if I don't my appetite doesn't come back until after ~6PMish. 

 

5) I lose track of time: I've noticed that I get so engrossed in things that I completely lose track of time. For example, I'll look at the clock at 5:15PM and say "I'll just do one more thing before I go." Next thing I know, the auto-shut off lights in the common space at work go off and it's now 7PM. What?!?!? How does that happen? That is also one of my issues with eating - I delay getting food at lunch time and then think, well, it's 4PM now so why bother to eat when I can just wait until dinner.

 

I feel like I don't know myself anymore - I doubt how I'm feeling so frequently. Is this normal? I know when I don't take the Nuvigil I end up sleeping a lot when I'm not at work. I go back to sleeping entire weekend / vacation days away. I've tried to give myself some slack since I was really sick and didn't take it while I was on all the other medication (antibiotics, steroids, inhaler, etc.).  I'm just feeling mentally drained and overloaded at the same time.  :(

 

I will definitely try some melatonin and I've started putting on alarms to remind me to shut off lights / tv, try to prepare for bed. I'd really appreciate any other suggestions, recommendations, confirmations that you guys have to share. 

 
 


#2 Kimpossible

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Posted 03 December 2013 - 08:15 PM

I have been going through similar things.  I started Nuvigil at 150mg and moved up to 250.  I had to stop for a while because I got sick and wasn't sure whether the medication was causing it or not.  I had such severe upper back and shoulder achiness, I was convinced I was getting the flu.

I also felt more spaced and out-of-it than normal (for me).

 

I started back at 1/4 of a 250, then half, then 3/4.  I couldn't take 3/4 because it made me feel like my heart was going to pound its way out of my chest.  I am currently at 1/2 of a 250.  I would describe its effects at this point, after several weeks of taking it, as keeping me from napping during the day but not improving the time I'm awake.  I'm still miserably tired and annoyed, wanting desperately to take a nap.  When I lie down to take one, I can't fall asleep.

 

I guess I have no real advice.  It's comforting to know that I am not the only one though.



#3 NightinPhilly

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Posted 03 December 2013 - 10:40 PM

Thanks Kimpossible - knowing I'm not imagining things is reassuring.

 

I am also fortunate to have a great sleep doctor who is really supportive; we discussed all my frustrations this morning during a follow-up. With my PSG / MSLT results and the readout from my CPAP card she suspects I also have delayed circadian rhythms - trying to make myself to go bed earlier just isn't working. She recommended that I try getting up a bit later to give myself a break and mapped out a plan to start to shift my internal clock with melatonin and light therapy. If at any point this doesn't work or I continue to have issues she wants me to reach out. She also pointed me to some additional resources to give me some more background, tips, etc.  

 

So I feel a bit better knowing I've been trying to force my body to do something it just doesn't want to do... once again the universe seems to be saying to have some self-compassion. :blush:  



#4 bh2601

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Posted 12 December 2013 - 05:50 PM

I have experienced some of this.  I've only been on this for a couple of weeks.  At first i was amazed at how much more awake i was during the day.  I didn't notice this working until I took a day off!  Then after being on it, I cannot go to sleep at a normal time.  Because I go to sleep late, I can't get up to work out in the AM.  Then I feel tired all day.  Yesterday I was even able to nap while on the medicine.  I basically still feel tired all the time but get less sleep. 

 

I'm also never hungry except maybe in the AM.  I often want to eat and then look at food and i can't do it.



#5 ruthie s.

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Posted 23 December 2013 - 06:19 AM

I have taken adderrall for ten yrs, it's been the one trusty thing ive ever known - and now that ive gotten to weeks 4-6 of Xyrem (dosage 4.5 /4.5) im more run down feeling plus my adderrall has for the first time in ten yrs - FAILED ME. in fact one day when I took enough to think I should finally be awake, it actually made me jittery and want to jump out of my skin.. never before now has my adderrall made me feel anything but fresh, clear, natural, and awake.

#6 Ferret

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Posted 23 December 2013 - 09:02 AM

OK ruthie s....are you smileyH's daughter?

I'm replying here to a whole string of posts from you this morning. Why this one? Because you state above that you are only on weeks 4 to 6 and are at 4.5/4.5 per night already. To me, that seems to be an extraordinarily fast upward titration.

You are not being snubbed but I am certainly not the person to be giving you advice on Xyrem because I don't use it, haven't tried it and probably never will.

If the Adderall was working so well for you, why did you start the Xyrem? I am a firm believer in "if it ain't broke, don't fix it" so I'm very curious as to your reasoning.

Please have more patience with your body and the changes that you are making. It's a process and everyone's different.



#7 Hank

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Posted 23 December 2013 - 11:29 AM

I have taken adderrall for ten yrs, it's been the one trusty thing ive ever known - and now that ive gotten to weeks 4-6 of Xyrem (dosage 4.5 /4.5) im more run down feeling plus my adderrall has for the first time in ten yrs - FAILED ME. in fact one day when I took enough to think I should finally be awake, it actually made me jittery and want to jump out of my skin.. never before now has my adderrall made me feel anything but fresh, clear, natural, and awake.

Have you gotten up to 4.5 x 2 in 4-6 weeks. A the above poster said, that is a very fast titration.

 

Your posts are vague on a lot of details.

 

You said that Xyrem failed you. But it did not fail you by allowing you to fall asleep, you experienced CNS side effects.

 

For me, as Xyrem chipped away at my sleep debt, I began lowering my Adderall dose for the same reason. My mind was racing, I experienced anxiety and racing thoughts and was a real wreck. Backing down on the Adderall dose relieved those side effects.

 

Your posts sound very "all or none"/ "black and white". There is not a lot of "flexibility" to your statements. I don't know if this is part of your overall personality and not big deal- or- is this something new. Is this a "change in your personality" , in which case this rigidity in your thinking may be a side effect.

 

I say this because it was the case for me. As my thinking became more rigid, I could not see other options available and the rigidity made perfect sense. It was one of the first red flags that I missed in my downward spiral.

 

So, I would suggest asking those close to you if they have noticed any changes in your personality. Don't make it a discussion with them and debate them or feel hurt by their responses. Just ask for a compassionate yes or no. If yes, discuss these changes with your doctor.







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