Nuvigil and Provigil NOT working What next??

I have been daignosed with Hypersomnia and I am on a CPAP but it has not eliminated my daytime sleepiness. A few months back my doctor prescribed me Nuvigil 150MG, and it worked great for about a week. After that week it had no effect. I did continue to try for the rest of the month. I did had my month follow up and I expressed to him that Nuvigil only worked for a week at which point he wanted me to try provigil. He stated that although they are basically the same medication some some people have reported that provigil work when nuvigil does not. So he wrote me a script for for 100MG provigil and told me to take 2 in the morning and one in the afternoon. That has worked for about 2 weeks and again has now worn off. I even stopped taking it for week and then started again to see if this would change things, but it has not. My question is if Nuvigil and provigil do not work, what is next? I have seen things about adderrall or ritalin. However my doctor states he does not like either of those because they are habit forming. Any thoughts???

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).

On the other hand, maybe some endocrine testing is in order. Maybe you are running high or low on something.

There are plenty of stimulants left in the amphetamine category, but they generally don't work as well as Nuvigil and Provigil for people who are sleep deprived. One thing about Nuvigil that may not have been passed along is to take it on an empty stomach and not eat for at least 30 minutes. Otherwise it isn't really going to kick in until several hours later.

I'm a little concerned about the hypersomnia diagnosis and giving you that much of the -fils, though. Excessive daytime sleepiness can often be kind of catchall if they can't figure out what else is wrong with you. There are also non-stimulant meds that might help your sleep more if you're really hypersomnic, which is usually how sleep docs prefer to proceed first. You try to work on the underlying problem rather than making someone feel better, which is what the stimulant class ends up doing.

How have your CPAP numbers looked? An old post said you were doing a lot better once you started CPAP therapy, and I'm surprised they haven't upgraded you to a Bilevel if you've got complex sleep issues.

old64mb wrote:You try to work on the underlying problem rather than making someone feel better

You are right, the best approach is to find the root cause and treat that rather than symptoms. In my personal experience, the doctors, including the world's top notch specialists, don't have the time to make the effort to determine the root cause, but slap meds onto symptoms. Finding the root cause is very hard. It takes time, thinking, testing, catching events, understanding temporal dynamics. It may require tests that don't yet exist, and then, if and when the root cause is found, is there a "fix", a treatment that resolves it? Often not. But it is the most critical, best approach to medicine.

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.

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.

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, 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. It may not work, but it's something that's probably worth an attempt. The only good news I can give you on stimulants is that there's no hard and fast rule for what works for some people and what doesn't work for others; brain chemistry varies dramatically from person to person. Just in general the -fils are the closest mimic we've come up with so far for 'normal' alertness, so the amphetamines may provide as much help even if they work.

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.

Comment,

A study done in France in 2009 found that 12% of those who were treated with CPAPs had Residual Excessive Sleepiness (RES) during the daytime (notice that EDS differs from RES b/c it may not relate to those on CPAPs only). After eliminating depression and restless legs syndrome the prevalence dropped to 6%. In my case the CPAP treatment is optimal but I still get a RES in the mornings till noons. But I would not touch Nuvigil because:

NuVigil=

Armodafinil(ar moe daf' i nil)


Why is this medication prescribed?

Armodafinil is used to treat excessive sleepiness caused by narcolepsy (a condition that causes excessive daytime sleepiness) or shift work sleep disorder (sleepiness during scheduled waking hours and difficulty falling asleep or staying asleep during scheduled sleeping hours in people who work at night or on rotating shifts). Armodafinil is also used along with breathing devices or other treatments to prevent excessive sleepiness caused by obstructive sleep apnea/hypopnea syndrome (OSAHS; a sleep disorder in which the patient briefly stops breathing or breathes shallowly many times during sleep and therefore does not get enough restful sleep). Armodafinil is in a class of medications called wakefulness-promoting agents. It works by changing the amounts of certain natural substances in the area of the brain that controls sleep and wakefulness.

1) I am not young enough to take the stimulating effects of this drug especially on the heart.
2) If I was on it and got a stroke then I could not be prescribed blood thinners to save my life b/c NuVigil counteracts the blood thinners effectiveness.

old64mb wrote: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. I took the sleep aid for some months, was groggy pretty bad during the day, then abruptly stopped the aids and my grog was reduced. It's still there, it's oddly a different "flavor", lighter-fluffier . It's like you can't win. So right now I'm taking no sleep aids, and a small dose of stimulant during the AM. That's the best I can do.

Maybe I could try other sleep aids and see if grog falls with them, instead of getting worse.

I think the stimulant burns "watts" during the day, which also helps me sleep the next night. Getting more exercise would help. Getting aerobic each day for 20-30 minutes probably works wonders for sleep too.

Thank you all for the information I have an appointment with my doctor on the 20th of this month and we'll see what happens.

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. Since guafenesin can make you feel sleepy and relaxed, you might have to take the stuff every day and wait a week for the sleepy effect of the guaf to start wearing off, thus exposing the stimulating effect of the Ephidrine. Or you might feel it right away, YMMV. Don't take the herbal stuff Ephedra though. That can cause heart irregularities. I take half a pill at noon with a half of a caffeine pill (to counteract the gauf). It works great for me.

I know how it feels to be desperate to feel awake. I don't think I would be able to keep my job if it wasn't for this med.

I was Rx Nuvigil by my PCP today, but I was shocked when I checked with my insurance company regarding coverage. Since it is a brand pharmaceutical, my 15% co-pay was $80 for a 30-day supply. The Nuvigil website has an excellent offer for folks who qualify: the first 30-day supply is free, and the co-pay is as low as $5 per refill thereafter up until 12/2013. (My co-pay would have been $30.) Alas, I didn't qualify since my wife is a state employee, so there will be no Nuvigil in my future. A 90-day supply of generic Provigil is $125, so I'm going to try that. I'm waiting for approval from my doctor.

If Provigil does not work for me, then I think I'm going to try Ritalin next.

yankeenoles wrote: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.

Hi yankeenoles!

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

Yes the AHI numbers are down, that is good. But I know from recent experiance and knowing what to look for that loosing weight (about 15 pounds for me - you lost 60!! Wow!!) causes one to tend more toward unstable breathing. Breathing control in us is done by a negative feedback loop. "Gain" factors in this are such things as muscle strength, resistance to muscle force (like all that stuff out there), sympathetic nervous activation, etc... Now, if the "system gain" goes above one then breathing takes off causing the likes of periodic breathing, hypocapnic central apneas, and many arousals due to the increased breathing effort. Arousals are a likely source of EDS.

In my case I could see this in my nightly data. Doctors in my new digs are scarce and I knew that unstable breathing is very bad for me - so - I have been reducing pressure - note effects in the data for about a week - reduce pressure and am down from 15 cm/H2O to 10 cm/H2O seeing an actual reduction in AHI (like from 2 to 1) and much less unstable breathing, and, less leaks as well.

Perhaps you should talk with your doctor about reducing pressure? At least that would be a place to start the conversation.

Regardless, I would recommend you look at your own data to see what is going on at night.

May you find the source of the problem soon!

Todzo

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.

i'm sure you have looked at your diet, but if not, you might want to. I found with my daughter who has narcolepsy really bad as well as myself, Not allowing her certain foods that she craved for breakfast or lunch decreased her symptoms greatly. With me I have severe OSA, and narcolepsy Thanks to my wonderful APAP machine AHI is <1, but I was still falling asleep during the day. I found that not eating carbs (esp. sugar) and staying away from the fake sugars helped tremendously with my daytime sleepiness to the point where I can stay awake most days without a nap! Just a thought you might check into.

brucifer wrote:.....If Provigil does not work for me, then I think I'm going to try Ritalin next.

A word of caution on the Ritalin. For me, the brief time I was on it (say 4 months), it had a varied effect. Yes, it would keep me awake but also seemed to bring on more agitation. YMMV, just a word of caution.