UPDATE - Appt with Sleep Neuro

[Madalot]

I am a long term Provigal user (6 years). Let me share some of my findings.

Your body needs to adjust to Provigal, that will take some time before you overcome some feelings of anxiety, nervousness, nausea (those are I side effects I experienced). I would recommend you start with a low dose (get a pill cutter) 50mg. After a week increase another 50mg until you reach the Doctors recommended level. Use it daily, first thing in the morning. Do not skip a day. It is non habit forming, and side effects are mild. Do not use it after lunch time as it may impact your sleep. The low initial doses will also help avoid interference with sleep.

Avoid Nuvigal. It is a longer acting, slow release version. Even after years on Provigal,converting to Nuvigal (even giving my body time to adjust) I had found my sleep was disrupted.

Do not be afraid to work with your Doctor on higher doses, if the results do not show. I have been at 300mg per day now for 4 years. It is non habit forming, has relative few side effects which go away over time. It is also far better for you with less side effects than other options such as Caffeine, Adderall and Ritalin. We have also found effective for me to stagger my doses with 200mg first thing followed with 100mg just before lunch.

I just realized that I never really addressed this. Sorry.

My sleep neurologist went straight to Nuvigil, 150mg. I wondered about that because my regular neurologist has erred on the side of caution (medication wise) and always given me about half a normal dose of anything to start, this after I experienced bad side effects the first time he gave me a medication. The mestinon dose is typically 60mg 3 times a day, but he started me at 30mg, 3 times a day to see how I would do and minimize any side effects. Smart and appreciated by me.

Since they had talked, I assumed (stupid me) that they had this covered and just went with it.

I have a pill cutter and cut a Nuvigil in half on Saturday rather than just stopping cold.

As I said -- IF I had gotten a more thorough response from them, indicating they understood the bad reaction to Nuvigil and would like me to try Provigil, at a much lower dose with a slow upward titration depending on my reaction - I might be inclined to try.

Even though they never gave me specific instructions about timing of Nuvigil (and believe me, they did not), it seemed logical that if you are taking a medication to keep you awake during the day, it would be smart to take it as early as possible to avoid it keeping you awake at night. I was taking it first thing when I woke up (with breakfast and juice, which I normally don't eat first thing, but started doing so I could take the meds).

I also have a MAJOR problem with my leaving two messages on Friday (first one not urgent, but the second one a few hours later WAS indicated as urgent, saying my situation was worsening badly) -- and not ever getting anyone to return that call. When I finally spoke to someone on Tuesday -- TUESDAY -- they claimed Tuesday was the first they had known anything was wrong. And they want me to just try the other medication? Seriously?

[Mary Z]

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[robysue]

Maddie,

My heart goes out to you. It's hard to see you struggling so hard day after day. And that frustration of dealing with person after person denying that you know what machine you're using (and why) has got to be a constant source of negative energy. For face to face meetings with these idiots, I'd suggest pulling out that user's manual and start of the conversation by saying, "This is the machine that Dr. So-and-so has put me on."

Going back to Square something before Zero: Once upon a time (when I was a newbie) someone made the suggestion of video taping yourself at night. Did you ever find a way to do that? If not, is it worth revisiting that idea in your opinion?

[Bear100]

I feel for you, as this was my situation 15 years ago. Sleep disorders did not have the focus, and widespread acceptance they have today, to say nothing of the leap forward in CPAP and medications. My primary and even my family questioned me. I am sure they though I would snap out of it, or stop being so lazy. It was impacting my lifestyle, family, job, relationships, everything.

You are already on the right road by challenging the Doctors and questioning the treatment. And of course learning from others, via CPAPTALK. I wished I had done so early on. People are not machines we are individuals. Once you get outside of what they consider the norm, Doctors have difficulty focusing on you as an individual. Nothing against them, but their pressures with medical system force them to quickly diagnose and move on. You need to determine what is right for you, by the results achieved. Go slow, experiment, be systematic, learn from others.

Do not be discouraged, if something does not work cross it off the list - one less variable in the mix. I tried everything, all the meds, CPAP equipment, meditation, biofeedback, acupuncture, hypnosis, a bunch of Doctors, as well as surgical procedures. My situation today is not perfect, but far improved. I continue to look for new avenues. Let your frustration give you energy to find solutions.

Bear 100

[SleepingUgly]

I tried to skim your posts to figure out exactly what side effects you had from Nuvigil. Trouble breathing and appetite suppression? Is it possible that the trouble breathing was anxiety? Wake promoting agents can cause anxiety (which is not to say they will, especially at appropriate doses). Appetite suppression is normal and may remit (I see it as a benefit, frankly). Side effects such as nausea or headache often attenuate over time. How did you feel on 75mg of Nuvigil? Better than on 150mg? If so, maybe there's hope for it at a lower dose.

I did not like Nuvigil. I liked Provigil much better. I had more side effects on Nuvigil than Provigil. Assuming the side effects from the medication were not life threatening, you might think about trying Provigil (or even a lower dose of Nuvigil before dismissing it and moving on to Provigil).

[Madalot]

I tried to skim your posts to figure out exactly what side effects you had from Nuvigil. Trouble breathing and appetite suppression? How did you feel on 75mg of Nuvigil? Better than on 150mg? If so, maybe there's hope for it at a lower dose.

I did not like Nuvigil. I liked Provigil much better. I had more side effects on Nuvigil than Provigil. Assuming the side effects from the medication were not life threatening, you might think about trying Provigil (or even a lower dose of Nuvigil before dismissing it and moving on to Provigil).

Almost every time I start a new medication, I experience side effects to a certain degree. As long as they aren't severe (or life threatening), I deal with it until I adjust and the side effects go away.

The side effects of Nuvigil were SEVERE (heading towards life threatening) and could not be ignored. I had no appetite, but was nauseous, had horrible stomach pain, but the breathing difficulties were during the day and getting frightening. Any moving around I did resulted in my gasping and panting for breath. I was also still sleeping during the day, even on the medication. The battle on my body between wanting to sleep and the medication trying to keep me awake was awful.

I'm not saying that I won't try Provigil, but I feel that I need a little more assurance from my doctor that he will be watching and available before I would be willing to agree to it.

I still need to hear about what to do with the mestinon.

Plus -- I need to figure out my insurance problem, which is the last thing I need right now.

[DoriC]

I'm not saying that I won't try Provigil, but I feel that I need a little more assurance from my doctor that he will be watching and available before I would be willing to agree to it.

That's really understandable, your Drs don't have a very good track record with communication and I would want assurance too that they would be available if I experienced any serious side effects from a new med. BTW, I forgot who gave that tip about not starting any new meds on Friday but that's something a pharmacist told me a long time ago so unless it's absolutely urgent I wait until Monday to start. Hope you get some answers today.

[Madalot]

I'm not saying that I won't try Provigil, but I feel that I need a little more assurance from my doctor that he will be watching and available before I would be willing to agree to it.

That's really understandable, your Drs don't have a very good track record with communication and I would want assurance too that they would be available if I experienced any serious side effects from a new med. BTW, I forgot who gave that tip about not starting any new meds on Friday but that's something a pharmacist told me a long time ago so unless it's absolutely urgent I wait until Monday to start. Hope you get some answers today.

Today, I am focusing on mestinon and figuring that out (I placed a polite reminder call a bit ago as I am still waiting on that). I will be seeing my Pulmo next week and will discuss the Nuvigil/Provigil situation with her, THEN decide if I want to bother trying Provigil. IF I do, there is NO doubt that we will start it on a Monday.

At this point, I am waiting on a call about mestinon, delaying any decisions about Provigil and sleeping my regular nightly sleep and 3-5 hours every afternoon. There's nothing else I can do right now.

[Madalot]

Going back to Square something before Zero: Once upon a time (when I was a newbie) someone made the suggestion of video taping yourself at night. Did you ever find a way to do that? If not, is it worth revisiting that idea in your opinion?

I was just reading back and saw this and realized (again) that I never replied to this question. So sorry....

We gave up that idea, but I'm not sure why. We spent a lot of time trying to figure out what equipment to get, but didn't get beyond that. And when nobody (pulmo, sleep neurologist) can see anything wrong on the documentation from the sleep study, videotaping my waking up - it's a lot to do when I'm not very hopeful it will gain us anything.

I DO know that the download from the ventilator will show increased usage AND the naps, so my pulmo will see that this week - I have my regular checkup with her later this week.

I am going to ask HER about the Nuvigil - ask her what she thinks of the fact that even on it, I still fell asleep (first day, I held off until around 4pm, but the second day on it, I still went to sleep around 1pm and slept for 3 hours).

At this point, I have resorted to OTC sleeping pills to try to keep me asleep. I wake up 2-3 times on it, but am able to go back to sleep. But...I'm still falling asleep in the afternoons....

[Mary Z]

Madalot, have you ever had a Multiple Sleep Latency Test (MSLT)? (I'm sure this has been already asked somewhere in one of your threads). When I took this test I found out I had "hypersomnia" which is just a fancy word for sleeping a lot. I take Nuvigil, 250 mg dose, and it was not enough to keep me awake during the day until my psych doc stopped one of my morning meds that I thought was sedating, Now I still get a bit sleepy early evening, but don't have to nap anymore.
I know this increased afternoon sleepiness is somewhat new for you, but perhaps you are just exhausted by a cycle of events- not sleeping well, stress, then worry about sleeping too much and trying to take care of the family and dealing with all the doctors.
What would happen if you just gave yourself permission to sleep when you're sleepy? I know you have a family to take care of, but for a week or two could you just "go on vacation" (simple meals, less stress over your napping, less worry about waking at night because you'll allow yourself those naps during the day) and see if you could get rested up. Take away the pressure, just for a week or two.
Glad you're trying some of the OTC sleeping aids, some of them are highly effective in helping you stay, or get back to sleep when you wake.
I'm late to your history so if this is just old stuff, take it as such and you don't need to respond.
Good luck.

[Madalot]

Madalot, have you ever had a Multiple Sleep Latency Test (MSLT)?

No, I've never had it. I guess it's possible my pulmo will suggest it, but as of now, it's never been mentioned.

What would happen if you just gave yourself permission to sleep when you're sleepy? I know you have a family to take care of, but for a week or two could you just "go on vacation" (simple meals, less stress over your napping, less worry about waking at night because you'll allow yourself those naps during the day) and see if you could get rested up. Take away the pressure, just for a week or two.

I'm kind of doing that now. I've stopped fighting the fatigue/desire to sleep and nap when I need to (and can). I have a way of making up the sofa and it's pretty comfortable for a long nap (on my machine always). I agree with what you're saying, but it makes me feel like I'm wasting so much of the day. But, if I can't stay awake (which I can't once I stop moving), I might as well give in to it.

Glad you're trying some of the OTC sleeping aids, some of them are highly effective in helping you stay, or get back to sleep when you wake.

I think the sleep aid is making me sleep harder and more soundly, but I still wake up a lot. But, I enjoy the deeper sleep. I will let my pulmo know about it, though, because I'm a bit concerned that it will depress my respiratory efforts even more...could be another problem that I need to watch for.

[DoriC]

For what it's worth, we tried Mike on OTC sleeping pills when he first started, they did the job but he was always zonked during the day. This didnt occur when the Dr gave him an RX for Ambien, he slept better and had no side effects. He still takes one occasionally if he doesn't fall asleep after an hr or so.

[Madalot]

For what it's worth, we tried Mike on OTC sleeping pills when he first started, they did the job but he was always zonked during the day. This didnt occur when the Dr gave him an RX for Ambien, he slept better and had no side effects. He still takes one occasionally if he doesn't fall asleep after an hr or so.

My pulmo might suggest a prescription, but I don't know. I'll talk to her about it...

[mdboze]

I started daily 250mg Nuvigil about 3 weeks ago. My new sleep apnea Doctor prescribed it for my regularly feeling exhausted before the end of each day, regardless of having had several hours good night sleep. (AHI was about 4.0 - 5.0 typical)
I take it every morning at about 7am. It definitely helps me stay focused at work.

Had many tough days with Nuvigil at first, still have issues, but not as frequently.
In the first 2 weeks: Several noticeable weakness of the knees when I would stand up from a sitting position. That is totally gone now.

Some days are fine, like today.
Some days are really bad. The bad days are always similar. A horrible tingling feeling in my head, starting around 11:30 am that builds. Feeling more awful as time progresses. Hard to describe the feeling, not a headache, but a deep tingly tiredness combined will a "big stuffy head" feeling (but without actual congestion).
It will subsides some after eating lunch, but lasts until the evening, sometimes up to bed time - leaving me feeling I totally wiped out and horrible.

But seems to be getting better as I build up the Nuvigil in my system.
Also have reduced appetite that still continues. (but I don't mind that side effect)

Drinking more water throughout the day seems to make a difference, and helps me feel normal. (still testing the water theory)

Oh.. and I get occasional intensely focused on something for long periods of time... or spend too long wordsmithing a document I'm writing at work. OR reading the news on my PDA into the night (to 3am once).
With this intense focus, my body may feel tired, but I am mentally focused; and easily distracted into the night, instead of sleeping.
SO... I learned that while taking Nuvigil, I commonly have to decide to sleep, rather that wait to feel mentally sleepy. Like right now... screwing around on the web after midnight, got focused reading about Nuvigil for hours. Yep it happened again.... NOW, I will decide to go to sleep (when I do this, I am usually out very quickly).

Just noticed the numbers in my signature need to be corrected to:
EPAP Max:6
PS Min: 7

I'll fix it later.

[Madalot]

Some days are fine, like today.
Some days are really bad. The bad days are always similar. A horrible tingling feeling in my head, starting around 11:30 am that builds. Feeling more awful as time progresses. Hard to describe the feeling, not a headache, but a deep tingly tiredness combined will a "big stuffy head" feeling (but without actual congestion).
It will subsides some after eating lunch, but lasts until the evening, sometimes up to bed time - leaving me feeling I totally wiped out and horrible.

SO... I learned that while taking Nuvigil, I commonly have to decide to sleep, rather that wait to feel mentally sleepy. Like right now... screwing around on the web after midnight, got focused reading about Nuvigil for hours. Yep it happened again.... NOW, I will decide to go to sleep (when I do this, I am usually out very quickly).

I'm really glad you are able to take Nuvigil, get some benefit from it and deal with the side effects.

The side effects, for me, were too severe and potentially life threatening to keep taking it. The daytime breathing problems were a big concern. Additionally, the side effects worsened each day.

A lot of people take these medications and get fantastic benefit from them. My doctors met with me and discussed it among themselves and all agreed -- this class of drugs is not something safe for ME to use. With my medical problems, the side effects were just too severe and dangerous.