I've been on CPAP therapy for six months and Provigil 200mg 1 a day for the past 3 months (for daytime tiredness). Over the past few weeks I've noticed the desired effect of Provigil has diminished and excessive daytime sleepiness has resumed. On average I'm on CPAP therapy 6-7 hours. Had a titration study a few months back-MD and RT are convinced my pressure is were it should be. I'd really like to return to the energetic euphoria I experienced following my polysomography/1st CPAP therapy! Suggestions? Thank you.
Thu Jun 19, 2008 5:47 pm
lynn543
Joined: 17 Jul 2005
Posts: 1177
Location: australia
Have the B12 checked through a urine test...not a blood test since the range is not as accurate as it should be and very wide. I found B12 to help me. Research studies have shown those in their early to mid 60's with B12 in the middle of the range on the blood tests showed early signs of Dementia. I am in my 40's and my B12 was in the acceptable range with the blood test at 300...but that is on the low side. Once I started getting B12 injections...my need for naps (usually 4 or 5 a day) have now decreased to maybe 1 a day. Also you could be having leg movements and unaware of it...which should have shown up during the re-titration.
I HATED the Provigil which was given for my Primary CNS Hypersomnia...speaking of that, Have you had an MSLT study? Anyway...the Provigil becomes ineffective over time and has to be retitrated...once it hits 1000mg they usually switch you to something else. Take a look.search at Hypersomnia and Narcolepsy..the meds used are the same...which is Provigil plus other alternative meds.
Another thing for me that has helped I think...I was switched to a BiLevel machine due to having trouble breathing out against the pressure, aerophagia, mild COPD and I forget what else...but it was something that you usually do not think BiLevel to treat. The BiLevel has helped me a lot also...took away a little more of the 'fog'. I am still in a fog..a Zombie but compared to before the switch of machines and the B12...boy, I was the walking dead.
Keep Us posted...curious to know if you find an answer...also curious to what other things your Dr may come up with...since I still want to wake up even more and live my life!
I don't get some doctors. If you're on CPAP, your energy should be increasing, the sleep debt should correct and Provigil should no longer be necessary. Unless you have some other disease process that would justify it.
I totally understand prescribing Provigil while trying to determine whether or not you have OSA, especially if you get drowsy driving, but once the diagnosis is made, every effort should be made to wean you off Provigil. Six months on both is way too long. If you're not improving on CPAP, they need to figure out why, for the sake of your cardiovascular health.
I don't get some doctors. If you're on CPAP, your energy should be increasing, the sleep debt should correct and Provigil should no longer be necessary. Unless you have some other disease process that would justify it.
I totally understand prescribing Provigil while trying to determine whether or not you have OSA, especially if you get drowsy driving, but once the diagnosis is made, every effort should be made to wean you off Provigil. Six months on both is way too long. If you're not improving on CPAP, they need to figure out why, for the sake of your cardiovascular health.
I agree, 100%.
Your doctor has the details of the diagnostic and titration test and should be able to pinpoint the exact problem. Throwing pills (long term) at it is not the answer.
Daniel.
_________________ The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!
I've been introduced to Bupropion 300mg once daily. Noticed improvement for about a month or so...back again to consistant daytime sleepiness. Have scheduled an appointment with a sleep specialist at a regional medical center/medical school.
Sleep study stats:
AHI-49.7 events per hour
AHI (supine)-67.7
Oxygen saturation(awake)-96%
Oxygen saturation(during REM sleep)-87%
I've been introduced to Bupropion 300mg once daily. Noticed improvement for about a month or so...back again to consistant daytime sleepiness. Have scheduled an appointment with a sleep specialist at a regional medical center/medical school.
Sleep study stats:
AHI-49.7 events per hour
AHI (supine)-67.7
Oxygen saturation(awake)-96%
Oxygen saturation(during REM sleep)-87%
My CPAP is set to 11 mc water pressure.
Have you read the earlier posts ??
Pills will not cure your tiredness...........it's like throwing buns at an elephant.
Talk to your sleep specialist, check your original and titration reports.......have him/her pin point the problem.
Daniel.
_________________ The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!
If you guys/gals are using full face masks, that's great, but check your machine's data for your AHI and leak rates. If your AHI is 5 or above, the usual culprit is excessive leak from the mask. Too high a leak rate reduces therapy pressure and your apnea is not being treated. You can then take steps to find and solve the leaking and your energy levels may improve as a result. Today's CPAPs compensate for some leakage, but can't for higher leak rates and your therapy pressure drops as a result.
If you don't have a fully data capable CPAP, and you still feel badly despite indications that your therapy is properly prescribed, look into what it would take to get a fully data capable machine. That capability won't provide all the answers, but it can be very helpful in pinpointing and correcting issues with your at-home therapy, that a sleep study or doctor cannot detect.
Whether your leak rate is excessive or not is determined from a few factors. (N.B. This information pertains to all flavors of CPAPs, including autos and most bilevels, but not to the ventilation assist machines such as the BiPAP SV or Adapt SV etc.)
Excess leak is calculated from the 'expected leak rate' of your mask at your pressure, and the leak amount displayed on your machine.
If you have a Resmed machine AND a mask selection on the machine that matches the mask you're using, you're pretty much done. Resmed already displays a figure that is very close to your 'true' leak rate. Much above -0- is a sign that your mask may be leaking excessively, especially if accompanied by an AHI that is at 5 or above.
If, however, you don't have a Resmed machine and/or your Resmed mask selection on the machine is at 'standard' or some other selection that does not match your mask, you will need to calculate your total leak rate.
First determine the expect leak rate from your mask at your pressure. The 'expected leak rate' is the stream of air coming from the mask via the 'port exhaust' or 'vent' outlets in the mask. All CPAP masks for home use, have a minimum amount of air streaming from these holes in the mask. (Some hospital CPAP masks are closed-ventilation. Do not use these at home. If you have one of these please ask about getting a ventilated mask.)
This is published in charts available from most manufacturer's web sites in a downloadable PDF on mask specifications. It may be published in literature you may have received with your mask. You can email or call the manufacturer to get the information, if you can't find it online and don't have it. (Your RT at your DME may be able to give it to you as well.) Please note whether this figure is Liters per MINUTE or Liters per SECOND.
Here's where it can get a bit tricky. Resmed tries to be helpful and subtract the expected leak from the displayed figure for you, so you have no math work to do. But if the mask selection on the machine does not match the actual mask you use, this figure will probably be off. You will need to email or call Resmed with your pressure and what mask is selected on your machine, and they can tell you what amount of leak has been subtracted from your display. Add the displayed figure to the figure from Resmed folk, to get your total leak. Otherwise your machine most likely is already displaying your total leak rate at 90th (or 95th) percentile.
To determine whether your leak rate is excessive, you need to calculate the amount of leak you experience that is over and above the expected leak for your mask at your pressure. If this figure is more than 5% (some doctors use 10% or even 15%) of the expected leak rate for your mask at your pressure, then your mask is probably leaking too much.
1. If the expected leak rate figure for your mask at your pressure is in liters per second, multiply by 60 to get liters per minute. Write this down.
2. Multiply the expected leak rate by 0.05. And also by 0.1. And by .15. Write these figures down.
3. If your total leak rate you experienced (you either calculated this or it is shown on your machine) is liters per second, multiply by 60 to get liters per minute. Write this down.
4. Subtract the figure from Step 1, from the figure in Step 3. This is the amount of leak you experienced which is over and above the expected leak from your mask.
Is this figure from step 4 (your excess leak) more than both figures from step 2? If so you are almost certainly experiencing too much leaking from your mask. If between the two figures from step 2, you MAY still be experiencing too much leak. If your excess is below the smaller figure from step 2, your mask is probably not leaking enough to drop your therapy pressure.
Here's an example.
Let's pretend your machine shows your 90th (or 95th) percentile pressure at 11, and your machine displays your TOTAL leak rate as 0.67 liters per SECOND. Let's also pretend that you looked up your mask's expected leak amount for pressure 11, and that is 35.8 liters per MINUTE. Let's do the math.
1. Don't need to do step 1 as the figure for expected mask leak rate is already in liters per MINUTE. (35.8)
2. Multiply: 35.8 * .05 = 1.79 Also 35.8 * .1 = 3.58 And 35.8 * .15 = 5.37
3. Convert the TOTAL leak rate into liters per minute. .67 * 60 = 40.2 liters per minute
4. Subtract step 1 figure from step 3. 40.2 - 35.8 = 4.4 liters per minute. This is the amount of leak over and above what normally comes from the mask at your pressure.
Compare 4.4 liters per minute to the figures from step 2 (1.79, 3.58, 5.37). If your doctor believes 15% is OK, this hypotheical leak experienced is below that figure. Probably would be better to get the leak at least below the 10% figure, and preferably below the 5% figure, if at all possible.
Of course you need to take into consideration other possible reasons for a high leak figure, that the machine would have no way of knowing. For example, if you take the mask off one or more times during the night with the air still blowing, the machine's algorithms may not detect this immediately and the leak figures might be skewed a little bit as a result. Make it a point to always shut the machine off before pulling off the mask, and see if your leak figures improve.
Hope this helps, Blessings,
--pseudonym
Thu Aug 21, 2008 8:53 am
ArthurAnxious
Joined: 30 Jul 2006
Posts: 332
Location: Bergen County NJ
I am actually tired of the standard line that CPAP will get rid of tiredness. I have experienced more tiredness after diagnosis and treatment than in the good old days before I knew I had OSA. And I have shared experiences with enough people online and in perrson to know that this is not very unusual. My doctor doesn't think there is anything wrong, says I may just notice my tiredness more. My internist offered to put me on provigil and said he has lots of OSA patients who need it. So why do the lay (self proclaimed) experts make fun of the trained MDs who prescribe provigil!
_________________ Arthur
Sleeping with a curvaceous blonde autoPAP (Resmed autoset). Hope springs eternal.....
I am actually tired of the standard line that CPAP will get rid of tiredness. I have experienced more tiredness after diagnosis and treatment than in the good old days before I knew I had OSA. And I have shared experiences with enough people online and in perrson to know that this is not very unusual. My doctor doesn't think there is anything wrong, says I may just notice my tiredness more. My internist offered to put me on provigil and said he has lots of OSA patients who need it. So why do the lay (self proclaimed) experts make fun of the trained MDs who prescribe provigil!
My energy has been been very good lately and seems to be getting better and this has been without the CPAP. Go figure. I'm starting to believe the fatigue and tiredness that I was having was due more to poor sleep habits, being slightly overweight, poor diet and lack of excercise all of which I have addressed. I do take Provigil but I'm finding that I am able to go without it more and at smaller doses.
After I was titrated and still had daytime sleepiness, the pulmonologist said the last thing that could be done for me was to prescribe Provigil. I was told my I had reached the end of the road concerning other choices. I declined and am happy that I didn't tie my health to a prescription and stop at that. It may be what works in more severe situations than mine, buy my first choice is not being dependent on a prescription pad. I would have stopped looking for other solutions and other specialists. Still looking of course, but feeling much improved with Bipap and weight loss. Its interesting to learn I would have had to move up to something else after getting to 1000 mg. or so.
If I were in a desperate situation, my choice may have been different.
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