Time Wasters for SDB

I first went to the doctor about 7 months ago for excessive daytime tiredness. I told them I did not have any trouble getting to sleep or going back to sleep when I woke up in the night.

This resulted in nearly 2 months of wasted time going through CBT-I (Insomnia, which I didn't and don't have).

After nearly 4 months on xPAP (and no relief in sight) I asked for a prescription for Nuvigil to help me cut back on the coffee I've been drinking to keep myself awake. I was referred to the Integrative Medicine department.

I went there yesterday after work - yet another waste of time. This time though it was only an hour (and my 2 cups of late day coffee) that were wasted - lucky me. Of course, missing those 2 cups of coffee left me ready for bed by 7:00 instead of my usual 9:00, so the evening was mostly wasted time as well since I could barely function and I spent my time yawning.

Why is it so few people - even in the supposed medical profession - have no clue about SDB?

I'm doing everything I can to take control of my condition - like requesting Nuvigil to cut back on coffee and pushing for another titration to prove to them CPAP isn't ever going to work for me. I think an ASV has potential, but the techs and the doctor still swear I can be treated by CPAP at low pressure - hence my 3rd overnight coming up.

I should have been in for a 3rd overnight after wasting the 1st month not getting relief from CPAP, but no, I had to waste even more months arguing with them, trying different things on my own (with help from here), and trying to get another titration scheduled.

I feel even worse now than I did 6-7 months ago - more of a zombie, less energy, and I'm drinking even more coffee.

Here is a possible approach that I have heard works for some, not all, who are in a position to commit to the four steps:

1. Be willing to change sleep habits so that PAP can be used at all times during all sleep in order to accurately assess whether constant use of optimized PAP can improve daytime sleepiness for you. Understand that you are not in a position to judge the full effectiveness of PAP until you are using it at all times during all sleep with optimized pressures. For some of us, we have to do the optimization of pressures ourselves to dial that in.

2. As step one progresses, attempt to discontinue all substances that can affect sleep, other than substances your doctor has prescribed and has stated are necessary for your health. This may include discontinuing or severely limiting coffee. (But do not drive when sleepy. Ever.) The substances we take to mask the symptoms can be the very substances that make the root problem worse over time. Ignore what other people do, especially those who don't have the sleep problems you may have. They may drink buckets of joe with no apparent effects on their bodies and lives, but that doesn't mean we can; we have a sleep problem and have to make our decisions accordingly. Same with other beverages or habits. No buzz or relaxation or distraction is worth sleepwalking through life when we have a choice in the matter.

3. Increase physical activity early in the day to the extent that is reasonable for you per your doc's approval. Fun? Not always. Big payoff in the sleepy/wakeful quotient? Often yes. Get the right tunes to listen to, and a good walk or treadmill/elliptical/rowing session can become the highlight of your day. Really.

4. Maintain strict sleep hygiene, paying particular attention to regular times for going to bed and getting out of bed, especially the time you get out of bed. Fun? No. We may feel that sleeping in is our one joy in life. But doing the sleep-hygiene thing strictly can be very helpful for getting one's life back once the above three steps have been taken.

If unable to take those four steps for some reason, perhaps because of the need to treat chronic pain or other long-term problems, then, and only then, resolve oneself to finding ways to live with the symptoms by taking substances that mask the symptoms. But understand that you are living life impaired to the extent that you may need to limit what you do, for your own safety and the safety of others. Do the best you can, but be responsible about knowing your limitations. My heart goes out to the people who chose to drive a car when they knew they were sleepy and ended up involved in a crash that was fatal or life-altering for someone. Avoid that.

It would be great if the universe worked in such a way that we could hold our doctors fully responsible for making our lives better so that we felt great during the day. But the reality is that we can't hold them responsible for the things they have no control over. We have to take the responsibility by taking control of what we can control. Docs are valuable consultants and are occasionally savers of lives in emergency situations. But that's all they are. The rest we have to figure out and do on our own by educating ourselves at places like this forum and then figuring out what applies in our case alone.

Otherwise, we become our own SDB time-wasters.

jnk... wrote:Here is a possible approach that I have heard works for some, not all, who are in a position to commit to the four steps:

1. Be willing to change sleep habits so that PAP can be used at all times during all sleep in order to accurately assess whether constant use of optimized PAP can improve daytime sleepiness for you. Understand that you are not in a position to judge the full effectiveness of PAP until you are using it at all times during all sleep with optimized pressures. For some of us, we have to do the optimization of pressures ourselves to dial that in.

I do not nap at all, so any time I'm sleeping, I have the mask on. The only exception to this is when I was using the ASV and the Amara View. The mask wakes me up a lot and at some point early every morning the only way I can get back to sleep is to take it off. As for settings, I don't think there are any that work on a CPAP or APAP. I only had success with an ASV which I borrowed and have since returned. My 2nd titration is next week and they are *supposed* to be titrating using ASV because of my data and complaints to them.

jnk... wrote:2. As step one progresses, attempt to discontinue all substances that can affect sleep, other than substances your doctor has prescribed and has stated are necessary for your health. This includes coffee. (But do not drive when sleepy. Ever.) The substances we take to mask the symptoms can be the very substances that make the root problem worse over time. Ignore what other people do, especially those who don't have the sleep problems you may have. They may drink buckets of joe with no apparent effects on their bodies and lives, but that doesn't mean we can; we have a sleep problem and have to make our decisions accordingly. Same with other beverages or habits. No buzz or relaxation or distraction is worth sleepwalking through life when we have a choice in the matter.

I have gone the low coffee and high coffee routes. I have stopped drinking it earlier and later. No change made any difference. It's not like I have any trouble falling asleep, going back to sleep, or staying asleep (except for SDB events). The suggestion not to drive while sleepy, but give up coffee, is impossible without a substitute for caffeine or a check to make me independently wealthy.

jnk... wrote:3. Increase physical activity early in the day to the extent that is reasonable for you per your doc's approval. Fun? Not always. Big payoff in the sleepy/wakeful quotient? Often yes. Get the right tunes to listen to, and a good walk or treadmill/elliptical/rowing session can become the highlight of your day. Really.

I honestly don't understand this one. I barely have the energy to get dressed and make a cup of coffee when I get up - not sure how blasting away any energy remnants is going to help later in the day. I think I need more information on this. This would also mean getting up even earlier than my 5AM wakeup time.

jnk... wrote:4. Maintain strict sleep hygiene, paying particular attention to regular times for going to bed and getting out of bed, especially the time you get out of bed. Fun? No. We may feel that sleeping in is our one joy in life. But doing the sleep-hygiene thing strictly can be very helpful for getting one's life back once the above three steps have been taken.

My sleep hygiene was sorted out before I ever sought medical help - that's why CBT-I was a waste of time - not only is it meant for insomnia, it's main goal is to establish good sleep hygiene.

jnk... wrote:If unable to take those four steps for some reason, perhaps because of the need to treat chronic pain or other long-term problems, then, and only then, resolve oneself to finding ways to live with the symptoms by taking substances that mask the symptoms. But understand that you are living life impaired to the extent that you may need to limit what you do, for your own safety and the safety of others. Do the best you can, but be responsible about knowing your limitations.

I feel I am at this point, hence my request for Nuvigil. The only thing I have not attempted is any extra exercise due to complete lack of energy to do so, and then it would have to be after work, not before.

jnk... wrote:It would be great if the universe worked in such a way that we could hold our doctors fully responsible for making our lives better so that we felt great during the day. But the reality is that we can't hold them responsible for the things they have no control over. We have to take the responsibility by taking control of what we can control. Docs are valuable consultants and are occasionally savers of lives in emergency situations. But that's all they are. The rest we have to figure out and do on our own by educating ourselves at places like this forum and then figuring out what applies in our case alone.

Otherwise, we become our own SDB time-wasters.

But doctors are also the sole source of prescription medications and in this case the correct xPAP machine. If I could go out and try different meds without a doctor, I would research (as I do now) and try them out on my own. If I could get insurance (or the VA in my case) to pay for an ASV machine on my own, I would do so.

There is only so much, we as individual civilians, can do regarding our own health.

MaxINTJ wrote:I have gone the low coffee and high coffee routes. I have stopped drinking it earlier and later. No change made any difference. It's not like I have any trouble falling asleep, going back to sleep, or staying asleep (except for SDB events). The suggestion not to drive while sleepy, but give up coffee, is impossible without a substitute for caffeine or a check to make me independently wealthy.

It's often not so much about whether one can fall asleep, stay asleep, or get back to sleep. Caffeine, like many other substances, can destroy the quality of the copious amounts of sleep we are getting. Which is why letting full-time optimized PAP occur during a drug-free state is a large part of the equation for many.

If caffeine causes sleepiness by affecting the quality (not quantity, timing, or continuity--but quality) of one's sleep (sometimes the case, sometimes not), it may still be worth it to find a way to accomplish the seemingly "impossible" during those weeks of the drug-free-optimized-PAP experiments.

You are either at the point that you are willing to go to extreme measures to improve your sleep OR you are at the point of proving nothing will help so you want drugs to mask symptoms without fixing anything and possibly making the root problem worse. It is impossible, in my opinion, to hold both mindsets simultaneously and accomplish much.

That said, I DO wish you the best in your further explorations and research. I hope it improves for you soon.

jnk... wrote:

MaxINTJ wrote:I have gone the low coffee and high coffee routes. I have stopped drinking it earlier and later. No change made any difference. It's not like I have any trouble falling asleep, going back to sleep, or staying asleep (except for SDB events). The suggestion not to drive while sleepy, but give up coffee, is impossible without a substitute for caffeine or a check to make me independently wealthy.

It's often not so much about whether one can fall asleep, stay asleep, or get back to sleep. Caffeine, like many other substances, can destroy the quality of the copious amounts of sleep we are getting. Which is why letting full-time optimized PAP occur during a drug-free state is a large part of the equation for many.

If caffeine causes sleepiness by affecting the quality (not quantity, timing, or continuity--but quality) of one's sleep (sometimes the case, sometimes not), it may still be worth it to find a way to accomplish the seemingly "impossible" during those weeks of the drug-free-optimized-PAP experiments.

I do understand the concept going caffeine free to see what happens, but I currently have 2 things preventing me going that tortuous route.

Firstly, I am not getting good data at all. Lots and lots of disturbed breathing, so my machine is incapable of solving my SDB problem - hence another titration. An ASV DOES resolve all the breathing problems, but I don't own one - yet.

Secondly, drugs in all cases I know about, have very little effect on me. For pain, a max dose of vicodin does nothing. I always take 800mg of ibuprofen for anything because 400mg does NOTHING. Even with the amount of caffeine I've been drinking for months never gives me the shakes or withdrawal symptoms. While I do consider it a possibility, I consider caffeine to be a really longshot for making any difference at night. I need to get the breathing problems under control first anyway.

jnk... wrote:You are either at the point that you are willing to go to extreme measures to improve your sleep OR you are at the point of proving nothing will help so you want drugs to mask symptoms without fixing anything and possibly making the root problem worse. It is impossible, in my opinion, to hold both mindsets simultaneously and accomplish much.

That said, I DO wish you the best in your further explorations and research. I hope it improves for you soon.

From comments here, the drugs for daytime use do not effect sleep, so I am willing to try them to keep me going until my SDB can be treated.

Since I have to work for a living, I absolutely need to drive M-F, 45 minutes each way, so not having anything is not an option.

Used to have the same problem driving 30 miles to work,the trip home aleays seemed shorter because I slept 5 miles of it, lucky the truck always pulled to the right. 2nd shift was a killer. Lucky, I wasn't! Jim

15 years later after I retired I found XPAP. Good for me, I realized to live I had to make XPAP work, no CAN'T option. No time to COMPLAIN, time to Live.

Goofproof wrote:Used to have the same problem driving 30 miles to work,the trip home aleays seemed shorter because I slept 5 miles of it, lucky the truck always pulled to the right. 2nd shift was a killer. Lucky, I wasn't! Jim

15 years later after I retired I found XPAP. Good for me, I realized to live I had to make XPAP work, no CAN'T option. No time to COMPLAIN, time to Live.

I appreciate all the help and suggestions I've received here, but at the moment I'm merely still treading water after nearly 4 months of trying, and I'm getting exhausted.

The machine I have CANNOT fix my SDB so I'm in limbo until after my next titration. Depending on what happens, how long it takes them to interpret the results, and then - if it shows I need a different machine - how long it takes them to get a machine to me. They don't have ASV units in their storeroom stacked to the ceiling with Respironics machines, and it's the VA, so it's truly a crap shoot on how long getting something non-standard would take them.