CPAP + Provigil

[kaydacat]

Has anyone had success with adding Provigil therapy to their CPAP therapy?

I've been on CPAP for 6 months now, and I have improved, but I still have quite a bit of daytime sleepyness. My doc wants to put me on Provigil, but after reading about it, I'm scared to take it.

Anyone got any testimonials they would like to share?

Thanks for you input in advance.

[roster]

You risk causing night time sleeplessness unless you get the dosage and timing of the Provigil exactly right. And the dosage and timing are different for each person.

Are you doing anything with caffeine?

IMO, without a data-capable machine and software, you could be having a poor CPAP therapy causing daytime sleepiness. What are the chances of upgrading?

[kaydacat]

I have thought about upgrading to a data compatible machine, but it is cost prohibitive. I've only had this machine for 6 months now. When I started therapy, I knew nothing about it, and this is what the DME company gave me. Of course now I realize I need a better machine, but I really can't afford it right now. I know provigil is expensive, but it turns out that my insurance covers it.

[roster]

I...... I know provigil is expensive, but it turns out that my insurance covers it.

Keep in mind that it is a powerful drug. It will keep you awake and alert but it has no "off" switch. It is commonly used by the military to keep enlisted people awake for 24 to 48 hours when necessary.

What about caffeine? I did a lot of experimenting and this helps me:

-On many days I drink 6 ounces of Diet Coke after lunch and this keeps me awake and alert until about 11:00 p.m.
-On days when I do a lot of strenuous exercise, it takes 12 ounces of Diet Coke after lunch to keep me awake and alert until about 11:00 p.m.

On either day, I can still fall asleep quickly and sleep most of the night. If it is after 2:00 p.m. and I forgot my fix, I just have to tough it out until bedtime. Caffeine after 2:00 p.m. is likely to interfere with my sleep.

I am not saying this dosage would work for you. Everyone is different.

There is about 47 mg caffeine in 12 ounces of Diet Coke.

Maybe keep in the back of your mind the idea of someday getting data capability.

[kaydacat]

Well, I told my doc that i'd mull over the provigil idea for a month and discuss it with him at my appt next month. Until then I'll try the caffeine. I will most likely buy a data capable machine next year. Thanks for your input Rooster.

[BeanMeScot]

I would request an in home study using an APAP machine before resorting to powerful drugs. It is quite possible that your pressure settings and/or leak rates aren't right and that is causing you to continue to be sleepy. Most DME's will provide a loaner APAP for a couple of weeks or so if prescribed by a physician. Also, make sure your TSH, iron, and vitamin D levels have been tested as well. An underactive thyroid or low iron or D levels can also cause fatigue. There seems to be some relationship, in particular, between being hypothyroid and having sleep apnea. If all that comes back ok, only then would I consider the drug therapy. It is always better to treat the problem than the symptom and being sleepy during the day is a symptom.

[roster]

Well, I told my doc that i'd mull over the provigil idea for a month and discuss it with him at my appt next month. Until then I'll try the caffeine. I will most likely buy a data capable machine next year. Thanks for your input Rooster.

Your dosage and timing with caffeine needs to be consistent. I suggest a prepackaged beverage from a major supplier. Locally or home brewed teas and coffees can vary widely in caffeine content from cup to cup.

Here you can find resources showing caffeine content of many products: http://www.google.com/search?q=caffeine ... lz=1I7SUNA

[kteague]

I take 200 mg of Provigil daily. Most days it gives me a window of "on" time. Sometimes, like today, I take it and still doze off and on for a few hours. Increasing the dose causes me to feel jittery with palpitations. I know why I am still sleepy - my limb movements during sleep are not well controlled. If I did not know why, I would want to pursue all other measures as described in prior posts. Years ago I pursued the loaner autopap route and found my pressure needed increased. Also reduced my ramp time and increased my ramp pressure. And addressed mouth leaks. My cpap therapy then became therapeutic and I saw significant improvement.

If a stimulant becomes necessary to function after all other issues have been ruled out, so be it. I know this sounds insane, but I am fortunate to be unable to work so I can just sleep when I'm sleepy. When I was still trying to work as a zombie, I would have been glad to take anything to help me through the days. I'm afraid it would have, however, just prolonged my misery and delayed confronting the real issues.

Hope you figure out what's best for you.

Kathy

[bootz]

Has anyone had success with adding Provigil therapy to their CPAP therapy?

I've been on CPAP for 6 months now, and I have improved, but I still have quite a bit of daytime sleepyness. My doc wants to put me on Provigil, but after reading about it, I'm scared to take it.

Anyone got any testimonials they would like to share?

Thanks for you input in advance.

Be sure to try it on a non-work day first. At first the energy level was great but it created insomnia for me no matter how little the dosage. After 3 days my mind wasn't tired but my body was! I guess my OSA is mild compared to some other folks.

[GumbyCT]

Do some research to find the model of data capable machine you want. Then have the doc script that make & model. Get this script in your hand. Your insurance will cover the change. But then you will need the reader and software which the insurance will NOT cover.

Improving your therapy will help a lot.

[twasbrillig]

I'm with the folks who say optimize your CPAP treatment first. Sometimes doctors are easily satisfied, and don't worry about whether you are getting the best treatment - as long as you are getting some treatment. But it's your body, and you need to be an advocate. You may be missing out on other health benefits as well if you are not optimizing your treatment.

I just read that they tested Provigil on regular, sleep-deprived people, using a driving simulator. Even though the folks felt more alert, they did not have across-the-board increases in driving ability. The article suggested folks might overestimate their improvement. One wonders whether Provigil might increase the risks, then, of having accidents while driving and in other situations that require alertness.

Your doctor should be your advocate in getting better (i.e. data capable) equipment. If you don't have an improvement in daytime sleepiness, you should expect a little more effort on your doctor's part. If you don't, get a different doctor!

[kaydacat]

Do some research to find the model of data capable machine you want. Then have the doc script that make & model. Get this script in your hand. Your insurance will cover the change. But then you will need the reader and software which the insurance will NOT cover.

Improving your therapy will help a lot.

I have a $2000 deductible, so it's really not that easy to get a new machine. I will talk to the Doc and DME about possibly getting an APAP for a couple of weeks though.

[elg5cats]

Has anyone had success with adding Provigil therapy to their CPAP therapy?
I've been on CPAP for 6 months now, and I have improved, but I still have quite a bit of daytime sleepyness. My doc wants to put me on Provigil....

rooster

What about caffeine? I did a lot of experimenting and this helps me:
On many days I drink 6 ounces of Diet Coke after lunch and this keeps me awake and alert until about 11:00 p.m....On days when I do a lot of strenuous exercise, it takes 12 ounces of Diet Coke after lunch to keep me awake and alert until about 11:00 p.m.

Kaydacat, Have you discussed any co-existing medical conditions with fatigue as a symptom? If not, a simple blood test can rule out thyroid problems which can cause fatigue...It can be a moment of wisdom for women who are experiencing significant fatigue to inquiry about cardiac health as fatigue is a primary symptom in heart problems for women. Some autoimmune syndromes also have fatigue as a primary symptom.

Rooster, I'm impressed at your benefits of so little caffeine intake. I'm jealous. In the past I could drink one 12 oz can diet coke before lunch and no more than 1/2 of a can at lunch or risk insomnia. Currently, I am drinking 60-80 ounces diet coke daily, never less than 40 ounces. I can drink a can of diet coke, go to bed and sleep 8-10 hours, get up, have a diet coke and return to sleep 3 hours later. I'm becoming concerned about side effects of caffeine at my rate of intake....I'm not sure it's any less risky than prescription stimulants types of medication.

I think there may be times, medications risks and benefits weigh toward taking the risks for improving quality of life. KaydaCat, I too am considering medication for improving daytime wakefulness. And remember, there are no 100% safe drugs and some drugs are used because the side effects are helpful to symptoms being treated. Just know what risks you are willing to take and what risks your feel appropriate for your desired quality of life.

elg5cats

[GumbyCT]

If your DME gave you a machine which does not capture any useful data for $2k and will not make it right then you need to loose that DME, period.

You need to talk to your insurance to see if you are outside the window that would require another co-pay, your insurance, - NOT the DME your INSURANCE. If it does require another co-pay, then get the script, remember that part, in your hand. That means YOU have the prescription and control who gets a 'copy'. This time look at buying the machine yourself.

For $2k you can buy a lot of machine. Or consider buying a used data capable machine from Craigslist or Ebay.


Good Luck

[KristieCA]

I started taking Provigil about 8 weeks ago. I have been using an apap for over 3 years, and, I'm a compliant patient. The day time sleepiness has always been a problem for me, but I never really brought it up with my doctor, until recently. I had a full physical and blood work done to rule out thyroid or other problems, and did a sleep study using my machine and mask, to rule out a machine issue, even though my card reader seemed accurate. My doctor and I discussed the usage of Provigil, and I researched it all over the internet, and of course, at cpap.com. I do not like taking medications , so I was very nervous-but, I decided to give it a try. As mentioned here, you need to find out what timing works for you when taking Provigil so it won't disturb your sleep. It took about 2 weeks to fine tune the time I need to take it, which is before 8:00 am. I really don't feel a big difference, but my husband notices I don't fall asleep while sitting and reading like I did before. The best part for me is, I can stay awake after 9:00pm, and not be asleep on the sofa!! I am taking 200mg, but started with half a pill because of my fear, but it didn't work as well, the 200mg is what I need. I don't see this as a miracle cure, but it does help with my day time sleepiness-Kristie