Nuvigil and Provigil NOT working What next??

[Sgt_Pepper]

Out of curiosity, what happened on your multi latency sleep test? I've been battling excessive daytime sleepiness for some time now. Had a complete physical from the family doc. She referred me to an endocrinologist for a peak at suspect thyroid and testosterone test results. All was made well there as of last June and still lots of sleepiness. My body weight is close to ideal and i", in good physical condition. All roads led back to the sleep doc. A re-titration followed by a mlst revealed narcolepsy in my case. I was asleep in 2 - 3 minutes for each of teh 5 naps and went into REM on 4 naps.

Everyone reacts differently but i tend to disagree with the idea that Provigil/Nuvigil/modafinil is superior to other stimulants for wakefullness. I took 200 mg of Provigil then switched to 250 mg of Nuvigil (my copay is also a % - I went on their website and got a $50 off per fill card and had my fills done once a month instead of 90 days so I could get three $50 discounts

A few things I didn't like about modafinil in its various forms is A) I reacted very inconsistently to it, B) I could often fall asleep on it, C) It's prohibitively expensive and D) because it can be long lasting it occasionally messed up my sleep at night and E) Sometimes it made my sleepiness worse. . it's not the end all measuring stick but modafinil is a schedule 4 med while some of the alternatives are schedule 2 (more tightly controlled). I would guess there are any number of reasons why something might be more tightly controlled .. having a bit more bite would be one of them.

My sleep doc put me on 20 mg imediate release adderal a couple of times a day. I can't speak for everyone, but if you're narcooleptic .. and I'm guessing if you're dealing with hyper somnolence, adderall isn't a euphoric happy pill. Adderal helps me stay awake. I sleep just fine at night. I've been on ritalin before and personally I find adderal to be a little smoother. Can you develop a tolerance to it? Sure .. but you can develop a tolerance to a lot of things. I skip it on the weekends when possible.

I guess there are two extremes to be avoided with the heavier duty stims .. one is handing them out too quickly without eliminating all other possible causes and trying alternatives. The other extreme is demonizing them. I get so tired of journalists who become self appointed experts and every now and again run a series on the ritalin/adderal crisis. The days of that stuff being handed out like candy are over.

There is another alternative I wondered about .. on the other end of the spectrum .. but that is prohibitively expensive .. and that is xyrem. My insurance doesn't like to pay for anything that isn't generic. has xyrem eevr been a topic of discussion with your sleep doc?

[Suddenly Worn Out]

Maybe it is not hypersomnia maybe it is depression? Ever tried anti-depressants? Push the dose up high enough and it becomes hard not to be wired during the day.

Eric

[AHI15]

Maybe talk to your doc about pseudo-ephedrine? I have very mild narcoleptic type symptoms, the doc would prescribe Nuvigil or Provigil but he and I decided no, due to cost and insurance fighting it and I don't like drugs that work on your central nervous system in general. So I take one-half to one 12-hr pseudo-ephedrine caplet in the AM, up to noon. It helps some. I don't take much because I don't want to get totally wired and blow a gasket (I have controlled high blood pressure already).

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.

If you want to avoid amphetamine's neurotoxicity (which may not be much except for abusers taking excessive doses along with poor nutrition and loosing sleep), then consider methylphenidate. But, MPH is very short acting. After trying Adderall recently and having extremely mild effects, I'm beginning to think that there is mostly a societal brainwashing that amphetamines are so addictive and dangerous. I'm left wondering what on earth people abuse the stuff for, since I get no thrill out of it and don't want to take more when it wears off. Actually, it barely even makes me feel energized. Remarkably, it just makes me motivated to function despite fatigue. But not in a wired manner. More spontaneous like I once was. Thus, it makes me feel more like normal, rather than drugged, except for some minor hand claminess and jitters (though less than caffeine and Nuvigil). MPH is more of a kick in the pants, but in an elating way. Until it wears off, then I feel miserable for an hour. Amphet. gives me no kick on the way up, nor crash on the way down. Still trying to figure out which is a better trade-off.

This is an interesting story:

http://en.wikipedia.org/wiki/Paul_Erdos

[sickwithapnea17]

what exactly do nuvigiil/provigil do? it seems they only mask the symptoms of sleep apnea without curing/treating it

[AHI15]

I have read from credible sources that adenosine is a key player in controlling the "sleep-wake" boundary, much the definition of narcolepsy, the loss of that boundary management. Adenosine causes you to get sleepy and go to bed when it accumulates in 2 places in the brain, but I doubt there's a test for concentrations in those places in the brain and to what degree adenosine "clears" during sleep to reach a proper level upon waking. A theory of mine, but if that is truly a major player as they say, I'm guessing in narcoleptics (narcolepsy in varying degrees, I'm mild) don't fully "clear" those levels.

There is also orexin. http://en.wikipedia.org/wiki/Orexin

A new sleeping pill is being developed to go right to the heart of the matter. This one, if it can pass muster, might actually be a near-cure for intractable insomniacs:

http://en.wikipedia.org/wiki/Suvorexant

[AHI15]

I agree in my journey through all this I feel that hypersomnia is a catch all diagnosis. My CPAP numbers are great, according to my doctor sleep apnea is not the cause of my EDS. My AHI still continues to be under 0.5. I have gotten my thyroid checked, I have lost 60 lbs, every possible test including an MSLT to find out my EDS issues and the only answer I get is hypersomnia. When I was taking the nuvigil I would take it on an empty stomach. My doctor had suggested that I actually set my clock an hour before I need to get up and take the nuvigil and go back to sleep. I started out doing that for a few weeks and once it quit working I would just take it as soon as I wake up. I really dont have issues falling asleep. I can sleep for 6 - 8 hrs, but I still wake up feeling like I slept 3 hrs. I exercise everyday and still can't seem to figure this out. I am kinda at a loss, and my doc has just told me that a small percentage of CPAP users still exprerience EDS eventhough their apnea is treated. I guess the trick now will be finding the right medication that works.

Oh darn, this is a difficult challenge to deal with. I have exactly the same problem. CPAP is working great, but I'm still near disabled with tiredness and fatigue. I'm now on the med. odyssey too.

Please read my older post on modafinil (Provigil) and R-modafinil (Nuvigil). I don't believe these are viable for every day use without pooping out like you've experienced:

viewtopic/t81336/considering-nuvigil--t ... tives.html

At this time, Nuvigil no longer works for me either to overcome EDS, yet it still can cause insomnia. So it's useless to me.

I hope you find answers. BTW, how long was it that you were getting non-restorative sleep before being diagnosed and treated for OSA, and how long have you been getting treated with CPAP?

Good luck to you.

[AHI15]

Ok, I'm glad to hear your SDB is under control, and that they've tested you beyond belief (even if I'm not glad about the latter per se.)

As I said, the only thing I can suggest is that there is some fairly powerful stuff out there to try to improve your sleep quality

Can you tell us what they are? I'm always looking for new leads... But I have been under the impression that anything which assists sleep is either of the benzodiazepine class which disturb sleep architecture and are therefore counterproductive for improving sleep quality, or Z-drugs which are just milder and less anxiolytic than benzos. Then there are certain tricyclic antidepressants such as trazodone and the tetracyclic mirtazepine (Remeron). I've tried Remeron which was a disaster despite sleeping better, since it was completely cognitive impairing and caused even more daytime drowsiness. Then there is Seroquel. Are you talking about that?

Oh, I almost forgot. About the only thing which continues to fascinate me with its potential to actually improve sleep architecture without serious daytime side effects, long-term tolerance and dependence, etc., is GHB (Xyrem).

But unless you are bonafide Narcoleptic, good luck getting a chance to experiment with that.

One other thought - you can't take most stimulants every day without developing tolerance. I've seen practitioners recommend skipping weekend doses, so it might be worth trying that with the -fils again and seeing if they work at least a bit.

Yes. At this point I'd recommend the OP take at least a solid month off any stims, then see if modafinil will work again only 1-2 days per week.

[AHI15]

As I said, the only thing I can suggest is that there is some fairly powerful stuff out there to try to improve your sleep quality, and I'd suggest talking with your doctor to figure out if there's anything in that category that you can try before moving on to another stimulant

We are all different, but I'm finding that if I take a mild sleep aid, such as 50 mg benadryl and a cup of Tulsi tea just before bed, I do sleep sounder in the beginning of the night, but my next day grog is worsened. Double edged sword.

Yes, antihistamines are counterproductive because they disturb sleep arch.

[AHI15]

You could try Ephidrine HCL. In the US you can't get it in straight form, it is always mixed with guafenesin as OTC Primatene tabs or Bronkaid and it's available at certain drugstores if you show an ID to the pharmacist. I think in Canada you can get it straight. It was the only thing that worked for me. Ritilin and Adderall put me right to sleep. So does coffee.

What Ritalin and Adderall doses were you tested on? The tendency I see here is for EDS patients to be given baby doses of these stims., so no wonder they don't work. I experience only mild effects from 20mg Adderall, but they last a long time. 20mg Ritalin makes me very alert, for 2 hrs. then crash.

[SleepingUgly]

If you want to avoid amphetamine's neurotoxicity (which may not be much except for abusers taking excessive doses along with poor nutrition and loosing sleep), then consider methylphenidate. But, MPH is very short acting.

I don't see what's more "neurotoxic" about amphetamines vs. methylphenidate. Also, methylphenidate is not necessarily "short acting". So let's start from the beginning. You can find both amphetamine and methylphenidate in short and long-acting forms. For example, immediate release ritalin may last just a couple of hours (although people metabolize these drugs at very different rates), similar to Focalin immediate release. But there's also Focalin XR (extended release), which lasts longer, as well as others, such as Concerta, or Daytrana (a patch). Amphetamines can have short acting formulations such as dexedrine immediate release, or longer acting sustained release formulations, Adderall or Adderall XR, Vyvanse, etc., to name a few.

Unless there's a medical contraindication for trialing some of these drugs, I would hope your doctor would be willing to try some of these if you've truly exhausted your provigil/nuvigil options (I don't remember what doses you used).

I've felt at times that medications don't last long, and if I could rotate from one to another every two weeks, that would help. Good luck finding a doctor who's willing for you to do that. My best guess for why a medication is not working well after so short a period of time is that it worked well briefly as a novel agent, but when it wasn't novel to your brain anymore, it really wasn't enough of a dose. Not very scientific, but I've seen this happen and it's the best description I've gotten the phenomena.

As for Xyrem, my understanding is that it works very well for narcolepsy and not particularly well for run of the mill excessive daytime sleepiness aka hypersomnia. I think some doctors may be willing to experiment with it in the absence of a likely narcolepsy diagnosis, but I don't know that most would.

[Suddenly Worn Out]

what exactly do nuvigiil/provigil do? it seems they only mask the symptoms of sleep apnea without curing/treating it

That is not true. Provigil/Nuvigil are FDA approved to treat narcolepsy. Which is a Neurological illness, not sleep disordered breathing. Also, both drugs are FDA approved to treat "residual sleepiness and fatigue" after CPAP therapy has been initiated and the patient is CPAP compliant. Unfortunately, despite CPAP compliance, some people have residual fatigue issues. For all we know, it could be due to some sort of brain damage or CNS changes from untreated sleep apnea. Or who knows what causes residual sleepiness and fatigue in sleep apnea patients. But thats what Provigil/Nuvigil are for.

If I remember correctly, both are also FDA approved for shift worker fatigue.

Eric

[AHI15]

Well now, could it be at this point that your CPAP is set in a way that causes EDS!?

[edited a lot of interesting stuff]

Wow, this is a post I need to file for further consideration. Thanks for the interesting ideas about how the CPAP machine may be a residual factor in not achieving successful sleep quality.

BTW - anymore, whenever I am proscribed a drug I start making a plan to get off of the drug. If I do not, the drugs, and all the added drugs to counteract the side effects of the drugs, and then those to counteract the side effects of the drugs proscribed to counteract the side effects of the original drugs - I do believe - will kill me.

[/quote]

Bingo.

[AHI15]

If you want to avoid amphetamine's neurotoxicity (which may not be much except for abusers taking excessive doses along with poor nutrition and loosing sleep), then consider methylphenidate. But, MPH is very short acting.

I don't see what's more "neurotoxic" about amphetamines vs. methylphenidate.

Just google the research on amphetamine neurotoxicity. It exists. However, for MPH, it may be the opposite. There is one study in which MPH was even neuroprotective from the neurotoxicity of AMP:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2701286/

Lots of interesting stuff here:

http://biopsychiatry.com/

Just the modafinil section:

http://www.modafinil.com/

Also, methylphenidate is not necessarily "short acting". So let's start from the beginning. You can find both amphetamine and methylphenidate in short and long-acting forms. For example, immediate release ritalin may last just a couple of hours (although people metabolize these drugs at very different rates), similar to Focalin immediate release. But there's also Focalin XR (extended release), which lasts longer, as well as others, such as Concerta, or Daytrana (a patch). Amphetamines can have short acting formulations such as dexedrine immediate release, or longer acting sustained release formulations, Adderall or Adderall XR, Vyvanse, etc., to name a few.

Yes, these are preparations.

What I was talking about is pharmacokinetics, not how long preparations work. The half-life of Ritalin is about 4-5 hours, and for amphetamines about 10-12 hours. Psychoactive effects do not necessarily follow blood concentration levels.

Don't worry, I'm not trying to be argumentative. It's just that we are on slightly different wavelengths, so I hope I've clarified the meaning of my terminology.

[Suddenly Worn Out]

what exactly do nuvigiil/provigil do? it seems they only mask the symptoms of sleep apnea without curing/treating it

My psychopharmacologist let me try some Provigil back in late 2008. He told me it was nothing but a sympathetic nervous system stimulant, basically an amphetamine. Ive taken both Ritalin (for severe fatigue and for depression off label) as well as Provigil. They both feel similar to me. Both work on dopamine. Both are classified as CNS stimulants. Both are controlled substances, although I believe Provigil/nuvigil have less abuse potential. If I remember correctly, Provigil and nuvigil are lower classified than traditional amphetamines like Ritalin.

Most of it is just marketing, to be honest. Whats the difference between taking controlled release Ritalin daily and a Provigil or Nuvigil daily? Not an awful lot.

Eric

[AHI15]

what exactly do nuvigiil/provigil do? it seems they only mask the symptoms of sleep apnea without curing/treating it

My psychopharmacologist let me try some Provigil back in late 2008. He told me it was nothing but a sympathetic nervous system stimulant, basically an amphetamine. Ive taken both Ritalin (for severe fatigue and for depression off label) as well as Provigil. They both feel similar to me. Both work on dopamine. Both are classified as CNS stimulants. Both are controlled substances, although I believe Provigil/nuvigil have less abuse potential. If I remember correctly, Provigil and nuvigil are lower classified than traditional amphetamines like Ritalin.

Most of it is just marketing, to be honest. Whats the difference between taking controlled release Ritalin daily and a Provigil or Nuvigil daily? Not an awful lot.

Eric

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.

Nuvigil generally produces no crash problems in most people. It doesn't crash for me. Of course I can never get to sleep at night and it doesn't keep me alert in the day so...it's not very useful.

Finally, the mechanisms of Ritalin and amphetamines are distinct, and fairly well understood. Modafinil appears to act on dopamine as well, but it is more complex than a simple dopamine releaser or reuptake inhibitor.

Modafinil != speed.