4 months out - why so tired still?

[sproatd]

I started CPAP last March. According to the results on my machine my apneas are way down so I'm doing well with it. It's now almost August and I'm still exhausted most days. I get up in the morning, get dressed & do my morning routine. Then if I sit down in a chair I start dozing and can't stay awake.

I was prescribed Provigil and started out taking 1/4 of a 200mg tablet. The whole thing was too much for me. I've recently started taking another 1/2 tablet of Provigil in the early afternoon. I was hoping I could decrease it over time with CPAP therapy. It works fine as long as I'm busy. The minute I sit down I can't keep my eyes open.

The Doc that originally suggested the sleep study said my symptoms sounded like narcolepsy. I've since heard, from a psychiatrist, that if I had narcolepsy I would go into REM sleep almost immediately. The clinic here doesn't do multiple latency testing.

So what else could be leaving me so tired? I'm really frustrated that I just want to sit here and cry. I should go see my doctor again but in the past he has put it down to me getting older, I'm currently 50.

[Julie]

Hi, if you go to your member page you can fill in your Profile with the full name, model, etc. of your machine and mask (text, not icons) so we can all see what you have automatically every time you post (also add pressure settings). If you're using a nasal mask, but (unknowingly) end up with your mouth open once asleep and lose all the cpap air that way, you might need a full face mask - but you can test that out by taping (a forum Search for it will give you more info.) for a couple of nights to see if it helps as it's so often needed. I also wondered about the backlash of having taken the Provigil and then being on the down side afterward, though haven't any personal experience with it. What about your leak rates? They would tell also if you're losing air that should be going down and not out.

[LoQ]

I've been on therapy for two and half years and am still tired. But it's getting better. In my case, it has been a series of micro-improvements. Each one of them has been the result of thinking and investigating. It may be frustrating for it to go this slowly, but I have no other choice.

You're just getting started. I suggest that you read, read, read on this forum, and keep a very open mind. Things you are certain are not true might actually be true, and if you have a closed mind, you won't find the truth. He who has ears to hear, let him hear.


As for what you need to change, with zero information to go on I'm going to take a stab at one of the most common problems and guess that you are using a nasal mask. If you are able to breathe through your nose easily, try taping your mouth shut tonight and see if you feel better tomorrow. Taping is an art. There are plenty of threads here describing it. Look for one by rested gal. If taping doesn't work the first night, re-visit the technique; do some more reading on taping.

[echo]

I'll jump on the bandwagon here and reiterate that if you're leaking (either through your mask or through your mouth), any AHI reading will be wrong. Here's the link to the mouth leaking/breathing info: Links to: Mouth leaks - Air Leaks - Tape - DIY Guard.

And please do give us more info- which machine, mask, settings, current Leak/AHI info, etc.

[kteague]

i agree about checking your leak data, and making sure you're not losing air out of your mouth.

What tests did your doctor run on you to determine if there was an identifiable cause for your sleepiness? If they left any stone unturned, tell them you want them to run tests to rule out all possibiliites. At one point I had to explicitly say to my doctor that I didn't want him to stop until we had answers. That's how I ended up with a sleep study.

Do you have a copy of your sleep study reports? Was there any mention of limb movements? That can be an issue for some. The thing about narcolepsy is that unless there are overt symptoms like cataplexy, it can look very similar to what anyone with sleep issues experiences. An MSLT at this point probably wouldn't be conclusive unless you've already ruled out all other possibilities. My sleep doc did another sleep study on me while using my familiar mask at my customary settings. Since we already knew my cpap treatment was garnering good numbers, it was an attempt to see what else might be going on. Maybe if none of the above helps, that might be your next option.

[sproatd]

Thank you for your responses. I haven't tried taping but my leak rate for the last 30 days is 2.4L/min. I don't have software but I will list what I can get from my machine below.

Days Used 1 month 1 week 1 day
Avg Usage 30/30 7/7 1/1
Pressure 9.0 9.0 9.0
Leak 2.4L/min 3.6L/min 1.2L/min
AHI 1.9 1.9 0.9
Total AI 1.8 1.8 0.7
Central AI 0.4 0.6 0.0

I had a sleep study and a titration study. I didn't have limb movement on either one, although my husband has always been able to tell when I'm sleeping because I once I'm asleep I jerk throughout the night. I haven't tried taping. I'm afraid I'll have a hard time with it. I find that I tend to yawn a lot and cough some until I'm asleep. I also move around a lot until I'm asleep. If I don't fall asleep right away I become more and more irritated making it harder to go to sleep. I guess I'm still fighting it.

I'm sure a big part of the problem is that I wake up due to pain after a couple of hours. I often have to go sleep in my recliner so I don't wake my husband up or because I can't tolerate being in bed any longer. I need to find an easy way to move my machine back and forth including the o2 tube.

I probably just answered my own question. I'm just not sleeping well due to pain.

Thank you for responding. I try to stay positive but occasionally being tired all the time just gets to me. I appreciate your support.

Thank-you,
Denise S.

[kteague]

I had a sleep study and a titration study. I didn't have limb movement on either one, although my husband has always been able to tell when I'm sleeping because I once I'm asleep I jerk throughout the night. ..... I also move around a lot until I'm asleep. If I don't fall asleep right away I become more and more irritated making it harder to go to sleep.

So, Denise, did they wire your legs for these studies? Did the report state no limb movements were seen, or are you saying there were no limb movements mentioned on the reports? Your description just sounds like my own and what I've read by others with RLS interfering with sleep onset and PLMD during sleep. That word irritated I am familiar with, though I usually say agitated, more an intense fitfullness where I'm stuck in a state of "almost". Maybe it's not your issue, but do make sure it's not.

I'm sure a big part of the problem is that I wake up due to pain after a couple of hours.

Pain in what part of the body? PLMD wakes me up with leg, hip, and back pain.

[sproatd]

Hi kteague,

I did have wires attached to my legs but they didn't detect limb movement. I'm not positive but I think it's more that my whole body jerks. My husband says it starts when I first drift off and I do it the whole time I'm sleeping. My husband seems to think it's some kind of seizure. Of course he's an electronics technician, not a physician. The doctor's never seem interested when I've mentioned it so I just assumed it wasn't too important. We've been married almost 15 years and I've jerked while sleeping the whole time.

I taped last night and noticed a difference. I used the u-shaped method so that my mouth didn't actually have tape on it. The method worked really well. I was still able to cough. The best part of it was that I didn't feel like I was swallowing air and I my ears didn't get pressurized like they usually do whenever I swallow while using CPAP. I think the pressure in my ears has a lot to do with feeling the need to yawn a lot. I did notice that my leak rate went up from 2+ L/m to just over 4 L/m. Over all it went well so I think I'll continue taping for now.

Thank you all for your help,
Denise Sproat

[sproatd]

I didn't notice the last part of your post. I've had chronic back pain for years. Low back and mid back. Sometimes the pain is in one area or the other and sometimes it's both. So needless to say I take narcotic pain meds which doesn't help the apnea. Doc's are most concerned with my neck and that's the least painful part. Some issues of getting older suck but it sure beats the alternative.

Denise S.