Terrible Fatigue

[BlackSpinner]

Last night the Elite's data screen showed Leak .26 L/s, AHI 6.0, AI 0.8, HI 5.2 (I wore my mask from 9:00 to 3 am, waking up every 2 hours).

You might want to bump up your pressure by .5 cm for a few days at the time. Spend a few nites at each new pressure and see how the numbers look and how you feel.
You might also want to find a therapist to help you deal with all the issues you have gone through. If your doctor refers you depending on where you are in Canada it might be paid for.

I mean, why do I suddenly crash NOW when there's another ray of hope on my horizon?

I found that often happens - when we relax and let down all the other problems suddenly come to the for front like needy little kids demanding "me too me too"

[benzmum]

Well, I have days where it takes quite a while to feel 'normal' in the a.m., but after something to eat, and a bit of busyness, I can feel fine the rest of the day, or possibly add in a short nap in the afternoon. And I have days where I feel great in the a.m., but later on want a nap, and feel worse after it, then magically feel better in the evening. So I'm not sure there are consistent answers for me, but others seem to do better (or worse), and I also wonder how much difference age and fitness make. A 40 year old man who's not INactive is probably going to feel at least decent more of the time than someone of 70, but how to measure either the difference age or activity level make, never mind diet, medications, equipment, etc. etc. is probably going to be close to impossible.

Yes, how to factor in diet, etc. - that's the stuff that makes me crazy, Jan. Where does one begin?!

[benzmum]

Last night the Elite's data screen showed Leak .26 L/s, AHI 6.0, AI 0.8, HI 5.2 (I wore my mask from 9:00 to 3 am, waking up every 2 hours).

You might want to bump up your pressure by .5 cm for a few days at the time. Spend a few nites at each new pressure and see how the numbers look and how you feel.
You might also want to find a therapist to help you deal with all the issues you have gone through. If your doctor refers you depending on where you are in Canada it might be paid for.

I mean, why do I suddenly crash NOW when there's another ray of hope on my horizon?

I found that often happens - when we relax and let down all the other problems suddenly come to the for front like needy little kids demanding "me too me too"

Yes, I get what you're saying about the "relaxation response" - that's classic with migraines: they often occur on Sundays when one's had 24 hours to relax from the week.

Maybe I will try putting my pressure up .5 cm. I'd done that a few weeks ago for one night and noticed nothing so I put it back. But at that time I wasn't feeling as awful as I am now. So maybe now's a good time to try it again. Thanks, BlackSpinner.

[John From RI]

Your posting really got my attention.

CPAP cured 60% or so of my sleepiness. I've been trying hard for 3 years to cure the remaining 40% so I can live a normal life. I'm getting so desperate that I thought I'd buy every full face mask on the market until I find one that makes me feel refreshed in the morning.

I'm new to this forum. I read other folks talking about their CPAP machine giving nightly performance results. Can someone explain how this works?

[millich]

Benzmum -

You might want to play with two of your meds. They may well be screwing up your sleep (which, needless to say, can lead to terrible fatigue). Both domperidone and tylenol #3 have caused sleep problems for me. I was fine with Domperidone (not available in the US) taken during the day but taking a dose a bedtime usually led to poor sleep. I've also found that the codiene in tylenol #3 - the few times I've taken it - puts me to sleep when I take it, but leaves me "high and dry" 3-4 hours later.

Clonazepam is very sedating and may increase fatigue and worsen apnea.

I'm not telling you to stop these meds. I'm just telling you that they MAY be responsible for your poor sleep and fatigue. You could play around with when you take them and see what effect that has on your sleep. It might help to keep a log so that you can tell what's going on.

Best of luck to you.

[benzmum]

Millich, I was warned about clonazepam increasing apnea, and I've found myself that Tylenol #3 (which contains caffeine!) is a no-no after 4 pm. I hadn't heard that Domperidone was a culprit, though. I'll keep an eye on it, and only take it if I'm in real pain. Thanks.

John, my cpap machine has a screen that reports its current state. I can get into what's called the SmartData menu by holding down the left and right keys simultaneously. From there I can select Review/Results/Efficacy Data and then read out the average of last night's leak ("day" setting), AHI, HI, and AI data. SmartData needs to be turned on before you can access all this on the Elite II, and you may need to have your clinician set this for you (perhaps someone else knows for sure?). Note, though, that the readings reset at noon so you have to look for the data before that time or you'll be reading zeros!

[Rustyolddude]

One thing I would suggest is doing a goggle search on each med and the fatigue symptoms you're experiencing, you've got a lot in the mix. Some may come back with little discussion and others may come back with blogs dedicated to the drug & side effects. Only then can you try to ween yourself off the med for a week or two to see if it has a positive effect. You have to keep detailed notes, a daily journal, difficult to do when you're not %100 mentally alert or motivated but it's the only way.

[millich]

Regarding the daily journal (which is a great idea), I find an Excel spreadsheet to be the best way to go. Takes a little time/brain power to set up, but after that, it's just a matter of plugging in numbers.

[benzmum]

The Excel spreadsheet does sound like the way to go for that log - thanks, rustyolddude & millich. I have been scribbling my Elite data on the back of my last ResScan print-out, but one day I'll forget that's where I wrote it!

This morning I made an appointment to see another respirologist on Wed, my GP on Thurs, and asked the specialist's assistant to fax copies of my study results over to both (because my GP's office still can't find it in their system). All this again looks like a ray of hope. I may have a tendency to dysthymia, but I'm still an eternal optimist at heart: it doesn't take much for me to think "oh, there maybe a solution after all!"

BTW, Saltlakejan, you mentioned Lyrica awhile ago for fibromyalgia: I'd actually been on since my surgery, but went off it about a month ago because one of the side effects is gas and I was having intestinal issues. In fact, I didn't notice an increase in discomfort in my scar tissue and from the nerve damage when I was no longer taking it.

Does anyone take Starnoc? We can no longer get it in Canada, but I remember at one time finding that I woke up feeling better if I took Starnoc at bedtime. It never helped me actually fall asleep, but the quality of sleep seemed better. Anyone here have experience with it?

[Rustyolddude]

You need to log more than just your xPAP data. You need to log what time you woke, went to bed, any naps, meds you took & times, how you felt, pain, sleepy, good mood, bad. How you slept, how long, bathroom breaks etc. It may not be of total interest to your doc, but it will help you.

As a side note regarding sleep meds, I've been told a low dose of Elavil is a common one for apnea patients with insomnia and other symptoms.

[Julie]

I don't recommend Elavil - it usually ends up being a depressant (certainly did when a lot of our 'pain' patients were put on it by the MD).

[millich]

You need to log more than just your xPAP data. You need to log what time you woke, went to bed, any naps, meds you took & times, how you felt, pain, sleepy, good mood, bad. How you slept, how long, bathroom breaks etc. It may not be of total interest to your doc, but it will help you.

Yes, absolutely right.

Benzmom - one more question. In addition to your meds, what vitamins or supplements do you take?

[benzmum]

Millich, I only take the 1000 IU vitamin D and 3 tabs of ~300 mg Ca/Mg/Zn. I take the D in the morning and one tab of Ca/Mg/Zn at bedtime.

Back in terrible fatigue mode right now.... Rustyolddude, I will make a list to remind me of all those things I should monitor. But frankly it makes me SO tired just thinking about keeping those records. I understand the reasoning behind it, and will endeavour to do so in case I can get a handle on what's going on.

[benzmum]

...I keep thinking how horrific it must be to have mononucleosis.

[benzmum]

I've got to tell all you kind souls who responded to my cry for help that I finally had a good night's sleep! I did take a drug in order to do so, but it didn't screw up the quality of my sleep because I woke feeling great. I actually slept for 6 hours uninterrupted - hallelujah! Last year I was put on a med called Gabapentin for pain as my nerves were healing after surgery. I went off it when I heard there was a drug that was more effective for nerve damage (Lyrica). But I knew that Gabapentin was sedating if you weren't used to it and I still had some in my home. So I took 900 mg (my bedtime dose when I'd been on it regularly) and it knocked me out cold from 10:30 to 4:30 am. And when I woke up I just felt so good from having slept that long that I didn't care that I could feel the sedating effects of the medication still. I wound up staying in bed till 9:30 am and felt so pleased to have done so. I did have a mild headache that had to be treated later in the morning, but to me that was a small price to pay (it only required a vasoconstrictor).

I know I can't continue to do that night after night, because I'll build a tolerance to the sedating effects of Gabapentin pretty quickly. But it's so good to know I have it in an emergency. FYI, I read in the literature about this med that it is sometimes used to treat restless leg syndrome. That's something worth noting.

I will report in after my appointment tomorrow. Thanks again, everyone, for being interested.