Nuvigil and Provigil NOT working What next??

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SleepingUgly
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Re: Nuvigil and Provigil NOT working What next??

Post by SleepingUgly » Fri Sep 28, 2012 10:20 am

AHI15 wrote:No, there are tremendous differences. Everyone responds differently, but for me at present, only Ritalin can make me alert no matter how fatigued I am. Not that I would consider that as a viable daily solution. Ritalin also produces a miserable crash when it wears off, though its not so bad if I only stay on it for a short time. Like to survive a drive to a Dr. appt
You're "crashing" off Ritalin because you're taking an immediate release formulation. You wouldn't "crash" as badly if you were on an extended release, and you would perhaps not "crash" much at all if you were on the patch.

It is possible that for you, and many others, the effects of amphetamines or methylphenidate are more robust than modafinil.

A lot of people's lives are improved by the addition of a wake-promoting agent. It can be temporary, but some people have to take them long-term.
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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Re: Nuvigil and Provigil NOT working What next??

Post by AHI15 » Fri Sep 28, 2012 11:00 am

SleepingUgly wrote:
AHI15 wrote:No, there are tremendous differences. Everyone responds differently, but for me at present, only Ritalin can make me alert no matter how fatigued I am. Not that I would consider that as a viable daily solution. Ritalin also produces a miserable crash when it wears off, though its not so bad if I only stay on it for a short time. Like to survive a drive to a Dr. appt
You're "crashing" off Ritalin because you're taking an immediate release formulation. You wouldn't "crash" as badly if you were on an extended release, and you would perhaps not "crash" much at all if you were on the patch.
Well, I think I'm taking an IR preparation because 1. I need a higher peak concentration to even begin to get an alertness benefit than could be achieved by all but the highest XR or OROS doses; 2. I can have the flexibility of "turning it off" faster if I don't want to be on it all day, or taking it only in the afternoon if I want to have a pleasant lunch without the appetite suppressing effect that would occur (for me) if I was on it through the lunch period. I'm pretty sure I'd crash even on an XR prep. because if I take Ritalin for a longer time period, my dosing schedule basically approximates the release pattern of a high-dose XR preparation.

If you read on the ADD forums, a large proportion of people have Ritalin crashes no matter what preparation they take. Certainly for me, if I only take a 2-3 hour dose, then the crash is mild or maybe not a crash at all. If I stay on it for 4-6 hours, it is worse. Some people report being frazzled for the rest of the day after even a small dose of Ritalin wears off. For me I recover normal mood and my usual evening peak in alertness, once the 1.5 hrs or so of misery passes. Also, for me the crash is worse if I was more fatigued from the get go. So, I'm learning to just avoid any stimulant meds. on a "bad day." It's just not worth it because it a) won't help much and b) the crash will be worse.
SleepingUgly wrote: It is possible that for you, and many others, the effects of amphetamines or methylphenidate are more robust than modafinil.

A lot of people's lives are improved by the addition of a wake-promoting agent. It can be temporary, but some people have to take them long-term.
Yes, modafinil worked well for me for alertness for about 2-3 months, then began to stop working. That is, the balance of benefit to adverse side effect slowly shifted from fairly positive to decidedly negative. Moda often kept me from sleeping until 1-3am. However, there were times when I fell asleep at the normal time and slept not too bad.

There was always strong anxiety and stomach turning, which subsided along with the alertness benefits.

In the end I was left with only mild anxiety, consistent insomnia, and still not being able to hold my eyes open. And that was even with only intermittent (2-3 per week) use.

Unfortunately, it is looking likely that I will be in that category of people who need to take a stim. med long term, for both ADHD and EDS management. It's looking like the only two remaining choices are amphetamine and methylphenidate. The former is causing a similar insomnia problem as modafinil, while only the latter works for me with no sleep disruptions.

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Re: Nuvigil and Provigil NOT working What next??

Post by Suddenly Worn Out » Fri Sep 28, 2012 11:44 am

I can tell you one thing for sure. Response to psychopharmacology drugs such as Provigil and Nuvigil (same drugs, just different names basically btw) or the amphetamines, is TOTALLY INDIVIDUAL! A drug can do anything. One person it might do this to them. Another, it might do that to them. Another, it might not do squat to them. I learned a long time ago, before I was put on CPAP, that discussing psychopharmacology on the Internet is like arguing about religion. Everybody has their opinion and there are a gazillion armchair psychopharmacologists on the Internet willing and wanting to give "expert advice."

I listened to some of those Internet armchair experts years ago and got talked into taking MAOIs. That ended up ruining my blood pressure.

I suggest sticking to your IRL psychopharmacologist for these drugs. And reading the OFFICIAL sites and reputable sites. Not that this site is not reputable it is just not the place to discuss sleep psychopharmacology as everyone is an expert on the subject. And response is so subjective and so varied.

Eric

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Re: Nuvigil and Provigil NOT working What next??

Post by 49er » Sat Sep 29, 2012 6:50 am

Suddenly Worn Out wrote:I can tell you one thing for sure. Response to psychopharmacology drugs such as Provigil and Nuvigil (same drugs, just different names basically btw) or the amphetamines, is TOTALLY INDIVIDUAL! A drug can do anything. One person it might do this to them. Another, it might do that to them. Another, it might not do squat to them. I learned a long time ago, before I was put on CPAP, that discussing psychopharmacology on the Internet is like arguing about religion. Everybody has their opinion and there are a gazillion armchair psychopharmacologists on the Internet willing and wanting to give "expert advice."

I listened to some of those Internet armchair experts years ago and got talked into taking MAOIs. That ended up ruining my blood pressure.

I suggest sticking to your IRL psychopharmacologist for these drugs. And reading the OFFICIAL sites and reputable sites. Not that this site is not reputable it is just not the place to discuss sleep psychopharmacology as everyone is an expert on the subject. And response is so subjective and so varied.

Eric
I respectfully disagree that this site is not the place to discuss psychopharmacology. Yes, it would be preferable if people had a good doctor to go to but then there is reality as many of us have found with sleep doctors.

It is up to each individual to decide if what someone said is applicable to their situation and proceed accordingly. The fact that you got talked into taking MAOIS is not the fault of the internet board. And by the way, I don't mean to be critical as I think all of us in our lives have done things we shouldn't have.

And by the way, it was those evil internet boards that enabled me to get of 4 psych meds safely. If I had listened to my so called reputable former psychiatrist, I don't think I would have been successful as his method would have been way too fast.

My heart goes out the folks who are struggling with ESD. When I took Adderall before I knew I had apnea, it helped initially with concentration and focus. But the effect waned.

Of course, taking 4 meds probably didn't help. Also, at the time I thought I had ADHD and I no longer feel I do.

Has anyone considered trying phosphatidylserine? I have seen this mentioned on ADHD boards.

I tried it on an infrequent basis and I wasn't sure how much it really helped. At some point, I may give it another shot.

49er

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Re: Nuvigil and Provigil NOT working What next??

Post by AHI15 » Sat Sep 29, 2012 8:41 pm

49er wrote:It is up to each individual to decide if what someone said is applicable to their situation and proceed accordingly. [edit]

And by the way, it was those evil internet boards that enabled me to get of 4 psych meds safely. If I had listened to my so called reputable former psychiatrist, I don't think I would have been successful as his method would have been way too fast.
Good for you. It's always better to get off them than get on. Like someone else said, if I have to get on something, I do it with a plan of how I'm going to get back off. And I don't let a Dr. decide what I should take. I decide if what the Dr. recommends is right for me. If not, I don't take it.
49er wrote:My heart goes out the folks who are struggling with ESD. When I took Adderall before I knew I had apnea, it helped initially with concentration and focus. But the effect waned.
How long did it take to stop working? What kind and dose, if you don't mind sharing.
49er wrote: Has anyone considered trying phosphatidylserine? I have seen this mentioned on ADHD boards.

I tried it on an infrequent basis and I wasn't sure how much it really helped. At some point, I may give it another shot.
I've tried some phosphatidylserine, and don't know that it did anything. Usually, no supplements do anything for me. But it may very well be that they can make things worse! I just experienced an occasion of avoiding a Ritalin crash, and I think the crashes may have been associated with taking Mg supplements. I have to see if I can reproduce this improved experience...

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Re: Nuvigil and Provigil NOT working What next??

Post by 49er » Sun Sep 30, 2012 3:15 am

Hi AHI15,

Sadly, I had a psychiatrist who thought I needed to be on meds for life and there was never a plan to get me off of them. Fortunately, I realized he was wrong but I wasted many productive years of my life on them.

I now follow your philosophy of not letting a doctor decide what I should take. I feel my former sleep doctor tried to bully me into taking meds and that is why I no longer see her.

My memory is very hazy as far as my Adderall experience. I think it worked initially for about a year and then the effect lessened to about 60%.

But keep in mind I was on at that time a cocktail of 3 meds that later went up to 4. The dose was 15mg which was increased at times. Unfortunately, I never found an increase to be helpful and it just led to more side effects.

Totally understand your experience with supplements and have no doubt that they can make you feel worse. I definitely experienced that.

People think they are harmless and that couldn't be further from the truth.

I hope you find solutions and soon.

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Re: Nuvigil and Provigil NOT working What next??

Post by forrie » Tue Oct 09, 2012 5:48 pm

Regarding Provigil, it's recently gone generic -- so ask your doc again about that. It's much less expensive.

Essentially, Provigil is comprised of two forms of the same chemical -- one long acting, the other short acting. Nuvigil is all the long-acting stuff, I believe. Basically, the pharma company wormed their way into a patent of something that already existed.... that's my understanding.

I personally have had limited benefit of Nuvigil (I have apnea and daytime sleepiness). It seemed to work for a few days, then it actually makes me sleepy! LOL Go figure.

I wouldn't do any pseudo-ephidrine or uppers like that... especially, if you have apnea AND high blood pressure (or other risk factors). I drink enough latte's during the day that caffeine doesn't do much anyway My neurologist had me try Ritalin -- GOD BLAH! He says it's actually safer than coffee, but the crash from it is horrible.

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Re: Nuvigil and Provigil NOT working What next??

Post by MaxDarkside » Tue Oct 09, 2012 10:45 pm

My apologies for not responding sooner, I've not been to the forums much lately. I went to Europe and got busy with work after my return and ... (excuses ad nauseum)...
AHI15 wrote:Don't you think you would be safer taking amphetamine? If the point is to reduce sleepiness, then a CNS stim. is warranted. In which case, you want to minimize peripheral stimulation so there isn't much cardio risk. Certainly with your history, you shouldn't be adding any heart stresses. Amphet. is much safer than using pseudoephedrine IMHO.
Yes, I should avoid anything that gives me cardio issues. I'm best avoiding everything if I can. The pseudo-ephedrine I take is only now and then lately and is a small dose, like a piece of a 12 hr release caplet. It's cheap and easy. Now I might have some mild chronic stable angina, my chest gets tight and my upper arms get numb/achy if I walk more than 2 blocks, tho probably not due to this, maybe due to stopping simvastatin in case that was contributing to my neuro problems in the gut (intestinal pseudo-obstruction) that sent me to the ER, for which the doc says there is no cure and makes me drink lots of plastic (PEG 3350 (Miralax)), so I've stopped the pseudo stuff all together in case that was contributing to it all.

Getting old sucks.
This is an interesting story:
http://en.wikipedia.org/wiki/Paul_Erdos
It is. An interesting character and in reading that, I got off onto some of the challenges he posed and then I got into degrees of social connectedness and then into vertical vs. lateral social power structures and communications that are powerful problem solvers whereby vertical power structures cause problems (think governments and wars) and well... I blew an hour BTW, my Erdos number is probably 3 or at most 4

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Re: Nuvigil and Provigil NOT working What next??

Post by srenit59 » Wed Oct 10, 2012 8:34 am

I just found this site through googling this similar question. I'm heading out to my sleep lab doctor in a short while to discuss this same issue. I feel that NuVigil has a short shelf life for me. some people swear by it. Well I'm not as well as CPAP. Several months ago my levels were increased from 7 to 9 because still getting up exhausted. I've been getting really drowsy behind the wheel again and in my class when idle. Oh well, let's see what she has to say, today.

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Re: Nuvigil and Provigil NOT working What next??

Post by yankeenoles » Wed Dec 19, 2012 6:57 pm

Sorry I havent posted on this in a while but I wanted to post an update. About 3 months ago my doctor prescribed me Well utrin XL to see if that would help. Unfortunately it has not helped, so after some more discussions he gave me a prescription for adderal XR 30 mg to start with. After taking it for a month it seemed like it was making me feel more tired so I have quit taking it. After my appointment today my doc stated that he has nothing else for me. I talked to him about changing my script to concerta but he stated that would probably not help. So once again I am back to square one. Has anyone had experience with concerta? I read that about a third do well on adderral, a third do well on concerta and a third do well on both.

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Re: Nuvigil and Provigil NOT working What next??

Post by arnicletech » Sun Jan 25, 2015 3:38 am

Every symptom that everyone here is experiencing is what I am going through now, here's my history:
Was on Zoloft from October 2008 till October 20013 when I was put on Nuvigil, but had to stop taking the Setraline because they did not go together.
November 2013 I went to the doctor for issues with Nuvigil and heart pains, was asked to stop and was then put on Adderall Jan 2014, July 2014 back on Nuvigil 1/2 tab of 250 mg before bed, until Dec 2014 to help me sleep at least 4-6 hrs straight through, issues with Adderall keeping me up and only sleeping 4 hrs a day.
So what has worked for me to keep me awake is Adderall 2 10mg tabs before work, 2 10mg tabs before lunch and 2 10mg 2 hrs before shift end at work around 5 pm. Only issue is now I need the 1/2 of the 250 mg of Nuvigil to go to bed around 11 pm and wake up refreshed and with at least 4-6 hrs sleep I usually wake up around 6 am, which is good for the kids and my wife take them to work and start my day, the only problem is I want to take the Setraline to deal with depression at times but cannot if I start back on the Nuvigil

My choices are Adderall for sure to keep me working to be able to be sound mind income and stability
Setraline for Sound Mind with sleep deprivation
or take the Nuvigil and have chest pains....

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Re: Nuvigil and Provigil NOT working What next??

Post by 49er » Sun Jan 25, 2015 4:13 am

arnicletech wrote:Every symptom that everyone here is experiencing is what I am going through now, here's my history:
Was on Zoloft from October 2008 till October 20013 when I was put on Nuvigil, but had to stop taking the Setraline because they did not go together.
November 2013 I went to the doctor for issues with Nuvigil and heart pains, was asked to stop and was then put on Adderall Jan 2014, July 2014 back on Nuvigil 1/2 tab of 250 mg before bed, until Dec 2014 to help me sleep at least 4-6 hrs straight through, issues with Adderall keeping me up and only sleeping 4 hrs a day.
So what has worked for me to keep me awake is Adderall 2 10mg tabs before work, 2 10mg tabs before lunch and 2 10mg 2 hrs before shift end at work around 5 pm. Only issue is now I need the 1/2 of the 250 mg of Nuvigil to go to bed around 11 pm and wake up refreshed and with at least 4-6 hrs sleep I usually wake up around 6 am, which is good for the kids and my wife take them to work and start my day, the only problem is I want to take the Setraline to deal with depression at times but cannot if I start back on the Nuvigil

My choices are Adderall for sure to keep me working to be able to be sound mind income and stability
Setraline for Sound Mind with sleep deprivation
or take the Nuvigil and have chest pains....
Hi arnicletech,

You really need to find a doctor you trust who can sort this all out which I know can be a major proposition.

Were you prescribed the stimulants for narcolepsy or something else? Do you have sleep apnea and if so, perhaps sub optimal pap therapy is contributing to the need for all these meds?

By the way, please fill out your equipment profile if you do have sleep apnea so members can better tailor their responses to your situation. Also, you might want to consider starting another thread since you replied to an old thread. Avoids confusion.

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Re: Nuvigil and Provigil NOT working What next??

Post by Bugbarb » Sun Jan 25, 2015 5:49 am

I was diagnosed with EDS after I had finished treatment for Lyme Disease. I was presccribed provigil/modafinil. It did what caffeine couldn't. However, I couldn't take it after 1pm or it would affect my sleep. For some strange reason, it helped me sleep better, improved my sleep pattern and most strangely it helped my speech pattern. For several years, I have been on a morning dose of400mg provigil. I have always had episodes of sudden sleepines since my Lyme diagnosis, even after I stopped treatment for it. Recently, I started having these episodes while driving. One time, I nodded off several times on a windy mountain road, finding myself in the lane of oncoming traffic. I went to my doctor and begged for an increase in my Provigil. Now, I take 200mg mid-day in addition to the 400mg I take in the morning, for a total of 600mg a day. Three months ago, I started on CPAP and noticed a decrease in amount 0f time that I woke up during the night. I still have episodes of sleepiness, but none as severe as prior to the increase in provigil and the addition of CPAP. I supplement the provigil with caffeine, coffee in the morning and an energy drink mid day. I have been on provigil for so long that I don't even remember how many years I have been on it. I'm guessing 15 years with no ill effects and little if any tolerance has built up. I hope you find what works for you.

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