daytime fatigue

attn. Den &Dsm Thanks for your response; here is some data : mask is "comfort gel " and I have no problems with it. quite comfortable. pressure setting is 5 and randes from 5.5 to14.8 with aver. 10.4 c-flex is 3. humidifieris set at 4 . a.h.1 aver. is 3.8 o.p.a.index aver. is 2.4 I may be off in space but none of this gets my attention. what good are stats. when I'm falling asleep 6 or 7 times a day and must restrict my driving to short hops ? my quality of life has deteriorated to a point that is worse than pre cpap!! Still may scrap that infernal device! harry

harryoh wrote:attn. Den &Dsm Thanks for your response; here is some data : mask is "comfort gel " and I have no problems with it. quite comfortable. pressure setting is 5 and randes from 5.5 to14.8 with aver. 10.4 c-flex is 3. humidifieris set at 4 . a.h.1 aver. is 3.8 o.p.a.index aver. is 2.4 I may be off in space but none of this gets my attention. what good are stats. when I'm falling asleep 6 or 7 times a day and must restrict my driving to short hops ? my quality of life has deteriorated to a point that is worse than pre cpap!! Still may scrap that infernal device! harry

Here's my take on what you've just told us.

Your bottom pressure is too low at 5. If it's averaging 10.4, I'd suggest bumping your bottom pressure to 10 (if you wish to remain in Auto mode). An alternative would be to switch the machine to CPAP mode with a fixed pressure of 10 or 11 and see how that feels and how your stats look for a week or two.
My other suspicion is that you're leaking air out your mouth (unless you tell me that you're taping your mouth shut at night). The alternative to taping is to use Polident adhesive strips or get a full face mask.

Either/both of the previously mentioned suggestions should help. Keep in mind that the recovery is NOT immediate and quitting therapy is definitely not the way to go.

Den

harryoh wrote:Pressure setting is 5 and ranges from 5.5 to 14.8 with average 10.4

I second what Den said with the qualifier that you'll probably want to bump that minimum up slowly while you adjust. I started with a min of 8 and ended up working it up to 10 for best results 0.5 cm/h2o at a time about once every 3-4 days.

Up to you entirely, and I'm NOT a doctor.

blarg wrote:

harryoh wrote:Pressure setting is 5 and ranges from 5.5 to 14.8 with average 10.4

I second what Den said with the qualifier that you'll probably want to bump that minimum up slowly while you adjust. I started with a min of 8 and ended up working it up to 10 for best results 0.5 cm/h2o at a time about once every 3-4 days.

Up to you entirely, and I'm NOT a doctor.

blarg,

But, if he's "averaging" around 10, it shouldn't be a big shock to him to set the minimum there.

Den

harryoh wrote:attn. Den &Dsm Thanks for your response; here is some data : mask is "comfort gel " and I have no problems with it. quite comfortable. pressure setting is 5 and randes from 5.5 to14.8 with aver. 10.4 c-flex is 3. humidifieris set at 4 . a.h.1 aver. is 3.8 o.p.a.index aver. is 2.4 I may be off in space but none of this gets my attention. what good are stats. when I'm falling asleep 6 or 7 times a day and must restrict my driving to short hops ? my quality of life has deteriorated to a point that is worse than pre cpap!! Still may scrap that infernal device! harry

From your post, I think I read:
1. you are on autopap using a "range" of 5.5cm to 14.8cm.
2. Cflex is at maximum relief or 3.
3. 90% pressure found within that range is 10.4cm.
4. Avg. AHI=3.8, OA=2.4 (AHI-OA=HI, so 3.8-2.4=OA=1.4, not bad).

As you mentioned, your AHI is not all that bad, certainly below the normal level of 5 and not bad enough to leave you feeling like crap.

So other than just feeling like crap, it doesn't appear you have any major issues with cpap therapy. So I think your question is why do you still feel like crap and being compliant? Some things I would ask are:

1. What was the mask leak rate associated with the above? if that was below 50L/m it shouldn't the cause of your daytime fatigue.
2. How many hours of sleep do you get?
3. What medications are you now taking and when do you take them? (any and all even if over the counter stuff).

If and when you nap, do you ever recall the feeling like you just stop breathing? (vs. something blocking your airway like your tongue, e.g. more like a lazy breather or you forget to breathe).

and here's my suggestions:

Personally, I don't think increasing your pressure from 5cm to 10cm is going to help you all that much with the daytime fatigue, if your AHI was 12 or something I could see it. But your AHI is not that high. So I don't think it is OSA leaving you fatigued during the day, it has to be something else.

1. Evaluate all medications you are currently taking, even OTC allergy medications. Medications for hypertension can be a major factor, antihistamines for allergies another. They all have adverse side effects, number one on nearly all is drowsiness, fatigue.

2. If your 90% pressure is pretty consistent at 10.4cm, then no reason to leave the Max at 14cm, put it down closer to your last titration or the 10.4cm pressure. It may help if you bumped the Min. pressure up, but what are you trying to accomplish with that increase? Your AHI is only 3.8 now, maybe you can get it to .8 or something but will that make you feel any better? I doubt it.

What you cannot see is any central apnea, those are guaranteed to leave you feeling like crap during the day. If you suspect any of those, then you need to limit the Max. pressure down to the 10.4cm or any PSG found pressure if you have that.

My guess: medications are the probable cause of the daytime fatigue, it is not OSA at all. Sometimes just switching when you take them can help, if you are having trouble falling asleep, try taking the meds at night before bed vs. in the morning. If they are the cause and make you drowsy during the day they may just help you get to sleep.

For example; The active ingredients in Unisom and Nyquill is (Doxylamine succinate) is actually a antihistamine yet it is sold as a sleep aid. Then when you look up what the active ingredients are for Doxylamine succinate you find:

It is also the most effective over-the-counter sedative available in the United States, and more sedating than some prescription hypnotics. In a study, it was found that doxylamine succinate is possibly more effective than the barbiturate, phenobarbital for use as a sedative.[citation needed] For this reason, doxylamine has sometimes been used off label in a manner similar to diphenhydramine for the reduction of anxiety symptoms.

You can try bumping up the Minimum pressure but I doubt very much that will help you any fighting off the daytime fatigue. There is a cocktail vitamin called Triple Energy, think it may be sold at Costco, it can help with some of the daytime fatigue.

and don't overlook any unknown heart condition, that can make you extremely fatigued more so than any sleep disorder.

were you checked for narcolepsy??

I completely agree with the above reply in the fact that if your AHI is at 3.8 your doing pretty good. I'm curious if you know what your AHI was during your diagnostic study and if this is a huge improvement. A normal adult will have an AHI of 0-5. So if your falling asleep 6-7 times a day I wouldn't say its because of apneic events your having....UNLESS....you are REM dominant, meaning your fine in Non-REM sleep but once you reach REM you have events all over the place. Still though 3.8 is a pretty low number if your pre-CPAP numbers are quite a bit higher (ie. my personal AHI pre-CPAP was 44.5 now I'm at 3.3 with 11cm which is completely satisfactory for me to get a sound sleep).

Its really hard to diagnose what the problem is, my first thought is there's something else going on....possibly leg movements (PLM's - Periodic Limb Movement). When you lie in bed before sleep do you feel the need to shift your legs or arms quite a bit? Ever feel a burning, creepy crawly, itchy sensation or just pain in the legs making you feel the need to move or adjust them then it goes away temporarily? If you do its probably a sensation that escalates...meaning if you try to keep them still the desire to move them increases and increases to a point where you cant stand it anymore and you have to move them. I tell quite a few people if they think that is the problem, the next time you feel the urge, keep them still for a min or so longer than normal and see if the urge escalates. When you do move them, don't readjust your legs alot just move them a little bit (maybe a few inches as opposed to a major shift). If that settles the urge I would definitely say that would be something to talk to your doctor about. Now what I just described is RLS (Restless Leg Syndrome) and you can qualify for medication on just telling your Doctor your legs are bothering you and/or keeping you up and your experiencing one of several different sensations (ie. creepy crawling, pain, itchy, burning, etc...). 80-90% of people with RLS also have PLMD which would be a reason you may be waking up several times during the night but your machine doesn't register it as an Hypopnea or Apnea because of no reduction in airflow. (*note - RLS is while your awake, PLM's cause arousals during sleep)

Sorry for the novel but I have Patients who constantly come in thinking they have Apneic events when in fact whats keeping them up at night is limb movements. Just a thought, hope I was somewhat helpful.

Chris

Also have you ever had an MSLT done? Its a Multiple Sleep Latency Test, you would have it done immediately following a PSG (polysomnogram - sleep study). This isn't a definative test to diagnose Narcolepsy but it would give your physician a good idea if that is a possibilty.
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CPAPopedia Keywords Contained In This Post (Click For Definition): AHI, Hypopnea

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CPAPopedia Keywords Contained In This Post (Click For Definition): AHI, Hypopnea

A MSLT is not a definitive test for narcolepsy? I had one done and found that I went into REM sleep in less than 5 minutes in 4 out of 5 naps....and I dreamed in those naps too. I thought that was pretty definitive. Plus, I get this weird feeling in my hands---they go weak..usually in response to sudden stress.

I wouldn't have thought I had narcolepsy..except for the fact that I was yawning ALL day nonstop and falling asleep in waiting rooms and while getting my nails done! I never fell asleep in the middle of a conversation---or while driving---which is what you think of when you think of narcolepsy....

If MSLT is not definitive, then what is?

Thanks...I go for my follow up test next week. I have been on Provigil for 6 months and feel like a new person. My Dr. wants me to take the Provigil on the morning of my MSLT. Is this normal protocol?

amy

tohegal wrote:A MSLT is not a definitive test for narcolepsy? I had one done and found that I went into REM sleep in less than 5 minutes in 4 out of 5 naps....and I dreamed in those naps too. I thought that was pretty definitive. Plus, I get this weird feeling in my hands---they go weak..usually in response to sudden stress.

I wouldn't have thought I had narcolepsy..except for the fact that I was yawning ALL day nonstop and falling asleep in waiting rooms and while getting my nails done! I never fell asleep in the middle of a conversation---or while driving---which is what you think of when you think of narcolepsy....

If MSLT is not definitive, then what is?

Thanks...I go for my follow up test next week. I have been on Provigil for 6 months and feel like a new person. My Dr. wants me to take the Provigil on the morning of my MSLT. Is this normal protocol?

amy

Ok, let me rephrase myself. In your case yes I would say thats pretty definative. Though its not my job to make that accessment, it falls on the physician. What I was trying to say is that there's no definative line in a MSLT that declares Narcolepsy. Your findings are pretty clear, the key is hitting REM within 5 min of lights out in 3 or more naps. I'm not quite sure why they went ahead and ran your 5th nap, that wasn't necessary, but thats here nor there. A MSLT MUST be run immediately following a PSG though.

There are 4 symptoms of the Narcolepsy Tetrad.

1. EDS - seen in almost 100% of patients w/ Narc
2. Cataplexy - seen in about 70%
3. Sleep Paralysis - seen in 30-50%
4. Sleep-related Hallucinations 20-40%
Only about 10% of patients with Narc will experience all 4 symptoms.

Sounds like you definately experience EDS (Excessive Daytime Sleepiness), and maybe possibly some form of cataplexy. Stress is known to trigger episodes of cataplexy, interestingly enough though the most common trigger is laughter. Forms of excitment and/or surprise will cause the body or parts of the body to go limp. Here are some videos showing severe cases of cataplexy http://med.stanford.edu/school/Psychiat ... iedog.html
The videos take a moment to load, but are very interesting.

Now please understand I do not run MSLT's at our lab, the daytime tech's normally do (rarely does a night time MSLT come into our lab), I only run nighttime Diagnostics and Titrations. I'd be happy to investigate this info for you. I go back in sunday night so I could get back with you before your test. Now I'm assuming your going in for a PSG before your MSLT, that is the only way to run a proper MSLT. I will also check on your question concerning Provigil. I will say though that if a Physician wants to know if a certain medication will work for the patient he prescribes the tech to administer to the patient immediately or as needed.

If there's anything else you would like me to check on I'd be happy to, let me know!

I apologize I don't have better information for you on the spot I just dont run MSLT's so I'm a little hazy on specifics.

Chris

Harry,

I'm going to post some thoughts & ideas that may be different to what seems the norm.

Having been through several cycles of improvement then decline, am well aware of the phenomenon that the AHI stats look great but you feel poor in the daytime.

My word to describe the poor feeling is 'leaden'.

In 2 years, my 1st 3 months were quite an exciting time, it seemed that at last I had the cause for the daily leadness under control & a therapy to deal with it. I started off on my trusty Remstar Auto in cpap mode set for 15 cms. Then after 1 month ( a commitment to a Mayo study) I switched to Auto set at 10/16 range. During this 1st 3 months had lots of energy & was exercising without difficulty.

By 6 months I was back in decline & feeling a bit desperate. I started searching data on OSA & started obtaining a variety of different machines to compare them. I obtained software & the means to monitor the data.

One way I can describe the periods of decline is that there seems to be a loss of will / energy & thus things like exercise go out the window & overeating becomes easy. Work started to become a struggle again.

At the 6 month period I got my hands on a bilevel & set it for 8epap/15ipap & found my self back on the upper - began losing weight & feeling great again. This particular Bilevel is very sophisticated but doesn't record any nightly data at all. But after about 6 months of this improvement, began to see a slow decline yet again. During this time I purchase a Bipap S/T in the belief it would allow me to gather nightly AHI data but discovered it didn't.

In Sept of last year I got my hands on a VPAP III & it does record lots of very useful nightly data. I had also purchased a Pulse Oximeter. I was damned determined to learn all I could to better understand the improvement/decline cycles.

In Sept I put several nights data up on my web site & a cpaptalk member (FrequenSeeker) along with SWS began looking at the info - believe it or not the data was showing me having 40-50 AHI score & FrequenSeeker immediately warned me to change the settings. I upped the epap to 10 & set the ipap to 14 & the AHI dropped in one night to around 4 or so.

Then using the PO & the VPAP III, I tuned the settings further & settled on 10/13 & for 5 months now have found myself on a 'sweet spot' & any time I try to vary it, seem to run into problems.

I then returned to my respiratory specialist who has me scheduled for a new split night sleep study on 25th Feb.

What he doesn't yet know is that since he saw me I have lost a further 20+ lbs & am today at the lowest weight I have been at in 15 years (183 lbs - in late 2005 I peaked at 230+ lbs). BUT, 5 nights ago I decided to lower my settings as an experiment & set 8/11 - I had a very nice sleep but woke with no desire or will to carry out my now regular exercise - I found this odd. Next night I went back to 10/13 & the following day did 3 hrs of exercise without difficulty & felt better. 3 nights later I turned the machine off & decided to try a night without it. Again had a great sleep (so it seemed) but once again woke with no real will to exercise & working was an effort - in fact I went and slept for 90 mins at lunchtime. Next night put the machine back on & the following day was up at 6am & off jogging again & feeling what I now term 'normal' (energetic).

It seems to me I can play with how I feel on wakeup almost at will by playing with my bilevel settings. Tonight I am going to try 9/12 (being Sunday tomorrow I can live with it if I wake up in the less energetic frame of mind).

So my take on this is that I can have what seem like lovely nights sleep & low AHI & feel still end up with a lack of energy. I can also stick to my 'sweet spot' settings & have not had a day on those settings where in the past 6 months I have not got up alert & exercised.

So my position based on my experience & observations & *lots* of comments by others here, is that AHI numbers do not tell the full story & god help any of us who aren't willing to experiment or monitor their therapy or who have ill informed or less than astute doctors/therapists.

I can't predict what the future holds but am willing to say at this time

1) No matter what my sleep study shows I *won't* be giving up my bilevel machine easily even if the study shows a low AHI.

2) Weight loss is not neccesarily an answer (my respiratory specialist predicted before my 1st sleep study that I would not have any significant AHI - he was quite surprised when that study came up with a 40 AHI count.) - I was not really overweight when I did that study in early 2005 - weight was 200 lbs at that time).

3) If anyone tells you your AHI are ok so you *must* be - really aren't saying anything useful or meaningful (most likely due to a lack of understanding of your particular needs)


As general comments:

The medical profession at all levels have a lot to learn about OSA & the effects of therapy on us cpapers. There is a lot of experimenting & learning still going on at all levels of the profession.

Your health is very much in your own hands & thank god we have places like cpaptalk where (in between the schoolyard scrapping ) we can share experience & information.

DSM

Motto: Always learning - always willing to!

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, CPAP, AHI, auto

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap, CPAP, AHI, auto

Wulfman wrote:But, if he's "averaging" around 10, it shouldn't be a big shock to him to set the minimum there.

Unless he's not used to falling asleep at that pressure.

Harry, I'm not a doctor or anything in the health fields. I do agree with Den that raising the lower pressure to 10 in your autopap range might be helpful. You mentioned that 10 was the "average" pressure used. What has the 90th percentile pressure usually been?

If setting the machine for a low of 10 doesn't bother you after you take several breaths, good.

If 10 feels like too much while you are awake, I'd do as blarg said and work up to that in small steps, setting the lower pressure of the range at 7 for a few nights, then 8 for a few nights, and so on, until I was able to use the autopap with 10 as the bottom pressure.

If it were me, from what you've described, I'd use a range of 10 - 16 with the autopap. Or if I wanted to try it in straight cpap mode, I'd do as Den suggested and set it for 10 or 11...see how that goes. You might be one who feels better on straight cpap pressure.

I wouldn't lower the upper pressure below 15 or 16. The data you mentioned indicates that the machine is occasionally having to use almost 15, even if for very brief times.

The Guest (snoredog? sounded like you? ) brought out a very good point about checking into other health issues...possible side effects of any meds you're on, and maybe the need to get yourself onto a good vitamin supplement. Good nutrition, exercise, comfortable sleep environment, even the mattress(!) -- so many things can have an impact on "feeling good" in general after a night of sleep. Thyroid, diabetes, heart problems...check 'em all out. Pain issues like arthritis or back problems could disturb sleep, too.

Sleep Tech Chris also brought out something definitely worth looking into. PLMD (Periodic Limb Movement Disorder) which no autopap data can tell us a thing about, and which (if the PLMs caused enough arousals) could leave a person feeling worn out even if cpap is doing its job fine.

I was glad to hear that you seem to get along with your mask ok, Harry. Sometimes the equipment itself that we have to use can cause sleep disruptions...arousals, whether we actually wake up enough to be aware of them.

Do stick with your cpap treatment while you work out any other issues that could be leaving you fatigued, Harry. There can be lots of pieces to the puzzle.

Everyone else knows more than me, but I just had to add: the machines can't read Respiratory Effort Related Arousals. My APAP says my AHI is 1.6 (as of this morning,) but who knows how often my RERAs are waking me up? The only thing I can go by is how I feel, and given that I have slept 12+ hours a night and feel really tired, I would say my pressure is not right. Short of a titration study then, I think you should experiment. For advice on that, I can only reccomend you follow the advice of the others here.

Good luck.

[quote="Rachael"]Everyone else knows more than me, but I just had to add: the machines can't read Respiratory Effort Related Arousals. My APAP says my AHI is 1.6 (as of this morning,) but who knows how often my RERAs are waking me up? The only thing I can go by is how I feel, and given that I have slept 12+ hours a night and feel really tired, I would say my pressure is not right. Short of a titration study then, I think you should experiment. For advice on that, I can only reccomend you follow the advice of the others here.

Good luck.