provigil: daily or as needed?

[quest496]

Hi All, question about provigil below, but some background first...


I haven't written in a while because I am actively contemplating jumping off the CPAP wagon. It has been over a month now, three different masks, four if you count Rested Gal's suggested alterations on the Breeze, and I am more tired than ever, sore muscles, achey joints all over when I wake up in the morning, in other words I feel worse than before. It's not only not working, but it actually is making me feel worse.

I admit a few times I have gone without the mask because I want to get sleep. According to my smart card I am sleeping an average of 6 hours a night with the machine and "That's great, we're happy with four hours" says my sleep doc's office. When I told htem I feel worse, she agreed to make a follow up apointment, the first opening being at the end of September!

I manage to sometimes conciously, sometimes not, remove the mask after about 6 hours and sleep for another 3-5 hours without it. If I try to force myself to go back to sleep with it on, I will shift restelssly for an hour, finally fall back asleep and just take it off in my sleep.

So, anyway, my regular doc suggests provigil. I have read the past posts about it, and I have gone to presumably independant sites regarding it, and am obviously scared out of my mind about the side effects, but have to remind myself that that is just what they have to say by law and it's not likely that I will get all of them, or even any of them, necesarily.

Here is my question:
most of the responses to previous posts talk about taking it only during the work week, or whenever they need a boost. I thought this was a drug, like antidepressants, that you were supposed ot take every day in order to balance something out that is not right in your system. But taking it only sometimes indicates that it is like any old stimulant, like nodoz or coffee.

I drink maybe one soda a day, coffee only when I have a really bad headache and am trying to stave off a migraine, and I have never in my life taken either a sleeping pill or a stimulant like nodoz. the closest I came was taking melatonin a few years back. (Did nothing, BTW.) If I do have too much caffeine it makes me jittery, sleepy and jittery, not awake and jittery.

So, anyone out there take Provigil daily? Not as a stop gap, but as a cure for the symptoms?

Very frustrated.
Quest

[christinequilts]

I've been on Provigil for 1 1/2 years due to treatment resistant Central Sleep Apnea (I have 30+ central apneas per hour with BiPAP ST which is better then the 65 without) and severe Alpha Wave Intrustion. My sleep doctor gives me a lot of flexibility in my dose- depending on how I slept, how I feel, and how busy of a day I have planned I can take up to 400mg. I do end up taking it nearly every day due to the severity of daytime sleepiness caused by lack of restorative sleep. If I am not feeling well or plan on having a 'lazy day' reading/watching TV I don't take it.

Provigil does not cure anything or treat anything- all it does is mask sleepiness/fatigue so it is not really an alternative to xPAP therapy by any means. Its the equivalent of turning off the lights so you can see a messy room instead of cleaning it. xPAP doesn't 'cure' anything either but it helps prevent the problem of sleep interuption from apneas.

Provigil can be taken on an as needed basis- it doesn't build up in your system like antidepressants and such that need a steady blood level to be effective. In fact Provigil needs to be taken early enough in the day (before noon- 1pm for me) so it doesn't mess with my sleep at night. It is different in how it works then other stimulants and its abuse potential but the over all effect is the same. If I had to chose between using my BiPAP ST that is only able to reduce my central apneas 50% or Provigil that only tries to cover up that I am sleepy during the daytime I would pick my BiPAP ST in a heartbeat.

[yawn]

I take 200 mg Provigil every morning and I don't notice any side effects. I often wonder if it's even doing anything for me. I usually have 3 cups of coffee too and am still fighting to stay awake most days (although I think that's getting better). I'm allowed to take another provigil at noon if I feel I need it but I usually don't take it. If I were at work and struggling to stay awake, then I would take it. I've seen other people talk about Provigil being addictive and their friends acting crazy when they take it but I haven't experienced any of that. I definitely don't depend on Provigil to wake me up and it doesn't make me hyper or shaky.
Why don't you give it a try and see if you like it. You can always stop if you don't like it.
Amy

[ozij]

Quest,
Try not to sleep without your mask. Sleep less, if that's what it means, but don't sleep without it.

I think apnea plagued sleep can mask the results to xPAP supported sleep.

We all go through the period of taking off the mask, but I believe a firm conscious decision not to sleep without the mask can percolate to your unconscious semi asleep mind and eventually keep you from removing the mask in your semi sleep.

You tell yourself something like this: "OK, if you can't sleep with the mask any longer, you don't have to. Get up, do something quiet and relaxing... When you're ready to sleep again, we'll go to bed and put the mask on.
Sleeping means sleeping with the mask. There will be no sleeping without a mask, period."

The reason I believe this is so important is that sleeping with a mask is something you condition yourself to do. Sleeping without the mask is a way of teaching yourself to avoid it - and when you do that you get reinforcements for sleeping without the mask, and you create a vicious cycle, where you know you can opt out, and of course you do.

Your conscious, semi-conscious and unconscious are all of them you, and as long as you believe there a kind of sleep that is better, more worthwhile, than sleeping with a mask, you'll try it.

Good luck!
O.

[guest29]

I have been taking 400mg daily for about 2 months now. It has made a big difference (positive) in my wakefulness during the day. like the first respondant I only take it during the work week. Mosts do not present any side-effects to me but unfortunately provigil does. If I don't eat specific food beforehand (banana or bread) my body violently reacts to it. I find that for the first hour or so I am more sensitive to, um, noxious smells. Needless to say the summer commute on the NYC subway can be challenging.

That said I am pleased with the results.

Kurt

[quest496]

Thanks guys, this helps a lot. The original diagnosis was hypersomnia, which Provigil is the most common med for. The lab refused to keep me for a 24 hour sleep test for it though once I tested "positive" for apnea.

Because I had no apnea before I gained weight a year ago, but have been tired for fifteen years, I assume, as my doc did initially, that it was something other than apnea.

So while I am not going to stop the CPAP therapy until I can see my sleep doc again, hopefully the provigil will get at the actual illness, which will give me the energy to lose weight and then the apnea will go away again.

Sigh. My life is a series of IF, THEN statements.



Thanks again and I'd apreciate any other feedback as well. It sounds like it is relatively random as to side effects. But most people I have heard from are positive about it in general. Makes the hypochondriac in me feel a little better.



Thanks
Quest496

[Janelle]

Yes, I agree it is very important to use the mask whenever you intend to sleep, even for a nap. The information shown on your reports only shows the number of hours you wore the mask, not the number of hours you slept. The only thing that will show that is a sleep study EEG.

I am wondering, however, if there might not be more to this than just not sleeping with the mask. Did you get Stage 3/4 sleep during your initial sleep study and/or your tritation study. It could be you are still not getting that, and that is the restorative stage of sleep, the part where you awake rested and eventually get more energy. This is what happened to me.

Do you have Restless Leg Syndrome? That could be causing your muscle aches and pains. Or a bad mattress. Do you have sources of pain which could be influencing your sleep, like arthritis, bad knees, neck, back? Need to get that under control, too.

There are many things that can influence your quality of the sleep you do get. The CPAP gets the apneas/hypopneas under control, but not the other things.

There are various medications you can use to get the Stage 3/4 sleep, Gabitril, which might cause weight gain, and Xyrem which causes weight loss, probably because the Stage 3/4 sleep affects your Cortisol levels and that is the cause of weight gain in Apneacs. I take Xyrem and in the last 6 weeks or so have lost about 12 pounds. I've been on APAP for 8 months, and it was only after getting on the Xyrem that I finally started feeling more energy.

I tried Provigil, too, but only when I had to drive for more than an hour. It did help my alertness, but it gave me a very seldom reported side-effect of drymouth for 24 hours. So I was changed to Focalin for alertness, but haven't taken it since starting Xyrem. I was also having trouble falling asleep and found just 1/2 a caplet of Ambien very effective for sleeping all night.

With the Xyrem, which has a whole list of scary side-effects, but only when abused, you take one dose mixed with Crystal Light at bedtime, four hours later you take a second dose. I fall asleep about 15 minutes after the first dose and sleep through until about 3-6 hours later. The Xyrem has a "life" of four hours on the "half-life" method. In other words, after 2 hours it is half as strong in your system as when you first took it. So it is totally out of your system in 4 hours. The higher the dose, the deeper you sleep.

Yawn, I would definitely look at your data sheet summaries for your sleep studies and check out the Stage 3/4 times. It could be this is your problem. And if you finally can get that really deep sleep, you probably won't be taking off your mask anymore either.

You really have to communicate with your doctor and let them know you are not doing well, even if you are showing 4 hours. True, they may tell you it simply takes time for some people before they start feeling rested, but if you aren't and are feeling worse, SOMETHING IS WRONG!

You haven't said if you are on a straight CPAP or an APAP, either. It could be the pressure if you are on CPAP are too low or too high and your are still not getting the treatment you need. Is your mask comfortable? That is a major reason people do not comply and quit treatment. Do you find it difficult to exhale?

You might want to request another sleep study if your insurance will pay for it to find out exactly what is going on.

[quest496]

Thanks for all the great info.

Unfortunately, my biggest problem is that I can't get in to see my sleep doc till September, and everyone else just tells me that the reports are sayign that the CPAP is working the way it should.

I've gone thru all of the other "usuals" regarding the aches and pains when I wake up, and they only just started upon using CPAP, so I'm pretty sure it's because I don't move around at night when I wear the mask, which makes me sore.

My regular doc, though not a sleep disorder expert, is great, and lets me email questions or call her at home and will see me when ever I need to talk to her. So it is with her that I am starting the Provigil. But I will look into the complete details of my sleep tests as well as the other medicines you mentioned Janelle, needless to say, they are all new to me.

I worry about taking something to help sleep because my work makes for a very un-regular sleep schedule. Some days I work 10-6, some days 8AM-2AM straight thru. But it sounds like the one you take is short lived, so as long as I have 4 hours or more to sleep I should be fine.

So, thanks for all the advice, it makes it easier when I at least know what different meds are even called.

I asked my pharmacist about Provigil and all he said was "it's different for everyone." No where near as much help as you guys have been.

Thanks
Quest

[rested gal]

Quest, this is going to sound overly simplistic..but...just in case...

I reread your posts, thinking about these points you mentioned:

I am more tired than ever, sore muscles, achey joints all over when I wake up in the morning,

I've gone thru all of the other "usuals" regarding the aches and pains when I wake up, and they only just started upon using CPAP, so I'm pretty sure it's because I don't move around at night when I wear the mask, which makes me sore.

Is any one of the "usuals" checking to see if your mattress is giving you comfortable sleep? Sometimes an older mattress that's seen better days, or even a fairly new one that isn't giving the kind of support that suits you best, could be a big part of waking up with aches and pains.

Just a thought.

I'm very sorry that you're not feeling better.

[quest496]

Thanks Rested Gal, yeah, mattress falls into the "usuals" I took about two months to find the right mattress because I knew I couldn't afford to add to my sleep issues by getting another bad one.

It was difficult for my brain to wrap itself around how much a decent mattress set costs these days as I had been a life long futon user before (loved it all the way thru college when I started having problems)

I saw some threads on the Tempur Pedic and remembered all my testing of the full tempurpedics, the mattress toppers, etc. I sunk so deeply into the tempurpedic that I couldn't move at all, and with my achey joints, it was actually difficult to get out of the bed once I was in it. (I admit that it was kind of funny at the time).

I've done meditation before sleeping, more, or less exercise than usual before bed, and/or upon rising, I've changed mattress, I've even kicked the cats out of bed for a few nights to see if that helped, as they are both 15-20 pound weights on top of my blanket at night. I've changed the temperature in the room, I've tried blacking out the windows, pretty much everything except a sleep drug.

So, hopefully I will be one of the ones who say that Provigil is great, and that will be that.

Here's hoping.

Thanks
Quest