Beyond CPAP

[Sgt_Pepper]

Over the last 6 - 8 months my excessive daytime sleepiness has gone through the roof. I'm very compliant with my CPAP and the nightly numbers when I check them are fine. i started with my family doctor and mentioned it at my last physical. She ran some additional tests and said i was basically healthy as a horse except for a few hormonal readings ... which led to a referral to an endocrinologist. I've worked with him to get the hormonal and thyroid things adjusted. Still no joy. In a follow up with my family doc I asked if she thought I was depressed - I didn't think so but we can be very poor self observers. We've known each other for some time and she didn't think so but referred me out to a specialist who agreed I wasn't depressed or anxious or any of those other things that can cause sleepiness/fatigue.

I got a prescription for Nuvigil which doesn't seem to touch the sleepiness. Made an appt with my sleep doc .. and saw the PA .. a pleasant lady who serves as 'gatekeeper' and compliance officer . We had a nice chat about sleep hygiene and such - and we agreed my sleep hygiene was fine. After checking my machine and data card she ordered a re-titration study as a start with a follow up in 5 - 6 weeks. The 5 to 6 weeks are up and I'll be scheduling an appt soon.

in my line of work, when something weird starts happening, we look at what changed recently. Went through the same exercise with the sleepiness. I'm now using a nasal pillows mask but the sleepiness started while still using my trusty Activa (the mask is physically fine). I was still getting the same amount of sleep during the same hours. Checked my numbers via the machine (I don't have the Resmed S8 software or card reader) and they looked fine there .. and .. the PA looked at whatever they can look at with the card reader and card and didn't see anything much different from what the machine summarized.

Has anyone been through a similar circumstance where the CPAP alone didn't take care of the excessive sleepiness? In my case it handled it for a few years but the feeling of walking through life zombified has returned.

[Maxie]

Actually I'm going through that now. Back in the early 70s I used to get excessively sleepy to the point of falling asleep when I leaned back in my chair. I went to the Army doctors and a young one said I needed a complete physical. I was 25 and wasn't happy with that diagnosis but when I went back I got an older doctor who asked me what was bothering me. At that time my mother had lymphoma and wasn't doing well. He prescribed librium with a very small dosage and it totally "cured" my sleepiness when I shouldn't be sleepy. I don't know if this is in any way related to your sleepiness but it seems that my mind/body was handling stress by trying to go to sleep. I don't think I had sleep apnea back then but maybe... Anyway after my mother died and I was able to get through my grief, I had no more inappropriate sleepiness.

[Sloop]

Has anyone been through a similar circumstance where the CPAP alone didn't take care of the excessive sleepiness? In my case it handled it for a few years but the feeling of walking through life zombified has returned.

20 years ago, I went through somethings similar. I had just been diagnosed with OSA and Fibromyalgia. I decided to make big changes. I stopped smoking cold turkey. I began CPAP therapy. I changed my diet. And finally I began a serious walking program. I can tell that when I started out on this regimen, I felt like hell ... like a truck had run over me. For 9 months, the fibro kept me feeling like crap. But, slowly the walking program took hold. The first day I began it, I could only walk about 100 yards. The next day, I did 125 yards, and slowly kept increasing my distance every day. Within 3 months, I was doing 4 miles a day. I noticed that each day for the first 10 minutes or so, I would feel lousy, but then the endorphins would kick in and I could pick up my pace and feel fantastic at the end. That feeling would stay with me for the rest of the day. I've stayed with this for all these years and beat back my Fibro to where it is nothing more than a minor nuisance. This past January 16, I celebrated 20 years of smoke free -- not even one puff. And conservatively, I've logged approx 20,000 miles. Only 5,000 more and I will have walked the equivalent of around the world at the equator. Today, I manage 3 miles per day and this is on two artificial knees.

I think you'll hear all kinds of advice here as to how to attack your problem, but I am of the belief that NOTHING will help you as much as a serious, committed walking program. Good luck.

[notyorz]

<SNIP>

I think you'll hear all kinds of advice here as to how to attack your problem, but I am of the belief that NOTHING will help you as much as a serious, committed walking program. Good luck.

I just started a walking program last week and I am hoping it has as positive results as yours! I'm looking at several pedometers so I can challenge myself against the numbers This one has peaked my interest: http://www.fitbit.com/product?jadid=228 ... 4AodbRAhfg but a Zeo and a standard pedometer may be where I end up.

I am on APAP a little over 2 months now. First 2 weeks were hell with ESD. 3rd - 4th week slow progress. 5th week to 6th week - much better. As of the last 3 weeks, the ESD (excessive daytime sleepiness) has returned with a vengeance.

[kteague]

Were there any revelations in your re-titration study? What did it say about arousals? About limb movements? About your sleep stages? About the quantity and quality of your sleep? So many other things can cause daytime sleepiness, there's a lot to rule out. Not sure how far your doctor's medical testing went. Are you on any meds that could cause this as a side effect? If the sleepiness persists and EVERYTHING ans been ruled out, sometimes that brings about discussion of testing for narcolepsy, but that wouldn't be the go-to evaluation without some clear indicators besides sleepiness.

[Sgt_Pepper]

Thanks one and all for the responses. At the risk of turning this post into a federal case, I'd like to respond to each post individually.

Actually I'm going through that now. I don't know if this is in any way related to your sleepiness but it seems that my mind/body was handling stress by trying to go to sleep.

So Maxie, you're going through teh same thing now? if you find the solution .. POST IT . I did consider the stress or other psychological condition angle. It's one of thse things we're all open to but there seems to be a stigma to admitting it. I thought it through and actually met with a professional to rule out anything above and beyond what we all go through in a world theat sems to get increasingly more complex.

To those who recommended walking/exercise - another great point. Something that has changed since I started with the excessive sleepiness is my exercise routine has lapsed. A year ago I was 4 nights a week at the gym - both cardio and weight training. When the exessiver sleepiness kicked in, my workouts dwindled. I started going to the gym regardless of being tired about a week ago. I work out at lunchtime as my sleep doc told me a lomg time ago to avoid evening worklouts. Morning and early afternoon are my worst times energy wise right now .. but I started going again anyway. I figure it won't do any harm.

Were there any revelations in your re-titration study? What did it say about arousals? About limb movements? About your sleep stages? About the quantity and quality of your sleep? So many other things can cause daytime sleepiness, there's a lot to rule out. Not sure how far your doctor's medical testing went. Are you on any meds that could cause this as a side effect? If the sleepiness persists and EVERYTHING ans been ruled out, sometimes that brings about discussion of testing for narcolepsy, but that wouldn't be the go-to evaluation without some clear indicators besides sleepiness.

This will sound silly but I hadn't given that a lot of thought .. and I should have. I used to be professionally associated with the hospital where the sleep study was done. In the past - and this is further back than I thought - I had unofficial ways of finding things out. This was pre-HIPAA when a phone call or text message would let me know if there was anything remarkable on a lab or other diagnostic test.

Through my old channels I knew when my test was scored .. but not much else. I * assumed * that meant the study didn't reveal much. I'm now thinking people are taking the HIPAA regulations seriously. I have copies of reports of every lab or other test I have done ... I don't have a copy of the re-titration study report. There were a lot more hoops to jump through now to get a copy - and I figured I get one at some point. Besides ,, if there was any need to know stuff on there .. I'd know that through 'other ways' ... maybe not anyore. To make a short story long, I scheduled my follow up visit and tehy told me I'd get a copy of the re-titration study report at that time. Times have changed.

As for the other diagnostics .. my family doctor ran all the stuff she knew to check. She referred em out to an endocrinologist - I waited 2 months for a appointment with the endo doc as he and his partner are generally regarded as some of the best in the Southeast. he started me on a thyroid med and is adjusting my testosterone levels - the thryoid and testosterone are now just about ideal. he was the one who recommended initally goign back to the sleep doc as he asaid tehre was no other medical reason for the excessive sleepiness.

I've worked through the various steps ---> annual physical ---> open talk with family doc ---> more tests from family doc ---> working with endocrinologist --> visit to psychologist to rule out depression/stress/other condition of that sort. I've tried to take a methodical approach with my family doc directing. She's the sort who takes her time with each patient .. actually listens .. and had a good rep with the other doctors and nurses at the facility I used to be associated with. i firmly believe each person is ultimately responsible for his or her own well being but at the same time I get a little uneasy with people who skip steps in this kind of process.

Apologies of the above was TMI. TMI is my middle name. I think my middle name was supposed to be Tim but the delivery room nurse we had was dyslexic.