Out of the Frying Pan and Into the Fire! Then, Deep Sleep.

In a couple days, you might experience the opposite - where it feels like you could drive a jet plane through your nose. Your nose could start whistling too with sharp intake of breath. Be patient. It should all resolve in a couple weeks as Rooster suggests. It sounds like you're progressing pretty normally. Yes, the pain is surprisingly minimal. STAY OFF the afrin from now on regardless of any desire to use it. It's bad to get hooked on that stuff.

Terminator wrote:Hi, Blackie

Would you mind explaining the strap you added and what mask you use it with, please...?

Thanks

I don't remember what BlackSpinner is using, but have a look here to see how Rested Gal taught many of us to use ladies tights - wiki/index.php/Hybrid_Mask_Modifications

roster wrote: I don't remember what BlackSpinner is using, but have a look here to see how Rested Gal taught many of us to use ladies tights - wiki/index.php/Hybrid_Mask_Modifications

Thanks, comrade:-)

T

QUICK UPDATE:

So it's been three weeks to the day since I had septoplasty and submucosal turbinate resection. I am happy with the results; I can now breathe through my nose 80% of the time during the day, and I have no trouble at all breathing through my nose at night on CPAP. For the last week since I started CPAP again, I have had an average AHI of about 2.5. I will post again after I have been on CPAP for one month.

That's wonderful, Bob!

UPDATE:

I am now two months post-op. I can breathe through my nose about 50% of the time during waking hours, and about 95% of the time at night on CPAP. I would rate the surgery (submucosal resection of the inf. turbinates and septoplasty) a success. I just started using a topical corticosteroid to reduce congestion so my guess is in another month or so, I will be breathing through my nose 70% of the time or more during the day and 99% of the time at night. But don't get too excited - I am still tired.

In the opening post just prior to my surgery, I had experienced a couple of amazing nights with CPAP where my AHI was low (2 - 4) and I felt great all day. Since that time, I have been unable to repeat the results. For the last month especially, I've used CPAP almost every night, and my AHI is generally around 4 which is considered treated. However, I am nearly as tired on CPAP as I was before CPAP. I am yawning all day long, sometimes I feel the brain fog and productivity at the lab goes way down. I even had a stretch of like 5 nights getting AHI's below 5, 8 hours or more each night, and still felt this way. It is extremely disappointing. I am now sleeping out on the couch (sorry wifey) so that I am forced to sleep on my side, and I am planning on cutting out all caffeine from my diet later this week (currently drink 2 - 3 cups of coffee a day). I have GERD but it's well-treated with a proton-pump inhibitor. I have a varied diet, though I don't get nearly enough exercise. Not really sure what else could be disrupting my sleep.

I did have period limb movements (PLM) on my sleep study, some of which caused arousals,so that's a candidate for why I still feel unrested. Unfortunately, treating PLM is difficult unless it's due to a nutritional deficiency such as Iron. I will review my sleep study when I get home from the lab to see what my PLM index was.

Overall, I am extremely frustrated. I've gone through my own personal hell, spent nearly $2000 out of pocket, and even had surgery to get to the point where I could sleep through the night while on CPAP. Now that I can, I still have the yawning and brain fog, still wake up feeling tired and crappy, and I am running out of things to try so I can feel rested in the morning. Son of a *****.

(Also, I do not believe that this is due to a sleep debt. While sleep debt is real, it is not the sort of long-term cumulative thing some people suppose. With sufficient, quality rest, it takes days to recover from sleep deprivation, not weeks and certainly not months. Further, when paying off a sleep debt, you should feel better every day, not worse. I just mention this because I've seen a number of people on here post that someone who is new to CPAP and feels more tired is just paying off sleep debt - I am very skeptical of that point.)

Bob3000 wrote:UPDATE:

I am now two months post-op....
...I do not believe that this is due to a sleep debt. While sleep debt is real, it is not the sort of long-term cumulative thing some people suppose. With sufficient, quality rest, it takes days to recover from sleep deprivation, not weeks and certainly not months. Further, when paying off a sleep debt, you should feel better every day, not worse. I just mention this because I've seen a number of people on here post that someone who is new to CPAP and feels more tired is just paying off sleep debt - I am very skeptical of that point.)

I also have seen many references to "long term sleep debt" and personally have been waiting to feel better...

Could someone (many) step up with references and reading points to locate the rationale for this symptom. I am looking at "other" factors being grouped as sleep debt as the more likely explanation...

Nord

Bob3000 wrote: I am now sleeping out on the couch (sorry wifey) so that I am forced to sleep on my side, and I am planning on cutting out all caffeine from my diet later this week (currently drink 2 - 3 cups of coffee a day). I have GERD but it's well-treated with a proton-pump inhibitor. I have a varied diet, though I don't get nearly enough exercise. Not really sure what else could be disrupting my sleep.

Well let's hope that discontinuing the caffeine has a big positive impact for you. Recent studies show that even one cup of coffee has a much bigger impact on sleep than people think.

I also don't believe in a long cumulative sleep debt and never advise people to just keep on doing the same thing and waiting for time to make things better.

A couple of things you don't mention. One is about your leak line. How does that look? Could you be mouthbreathing with the nasal pillows? One symptom is dry mouth.

Another thing is your subjective judgement of what is going on at night with your sleep. Subjective judgement can be very misleading, but how often do you think you awaken and how many hours of sleep do you think you are getting?

Wow what an amazing story. How you ever made it through your schooling is beyond me. I am so glad you had the fortitude to stick to it and find the way. Now that you are finally getting the sleep you need you should feel a lot better. Best wishes for the rest of your schooling. Stay with us please and keep us informed. We care.

Laura

Thank you for sharing your story. That was quite a time you had. I admire your tenacity to make it work. You give hope to those of us that are still struggling to get this to work right.

Bob3000 wrote:I am planning on cutting out all caffeine from my diet later this week (currently drink 2 - 3 cups of coffee a day).

I did have period limb movements (PLM) on my sleep study, some of which caused arousals,so that's a candidate for why I still feel unrested. Unfortunately, treating PLM is difficult unless it's due to a nutritional deficiency such as Iron.

I thought PLM would responded to mirapex and requip. Unfortunately for my PLM and RLS both meds have bad side effects for me.

Cutting out caffeine might help with PLM, I know any caffeine will make my RLS significantly worse. I drink a diet coke once or twice a year when I have a killer headache - it has to be bad for the headache improvement to be worth the floor pacing I will do that night.

Good luck finding out why you are still tired.

roster wrote:Well let's hope that discontinuing the caffeine has a big positive impact for you. Recent studies show that even one cup of coffee has a much bigger impact on sleep than people think.

I also don't believe in a long cumulative sleep debt and never advise people to just keep on doing the same thing and waiting for time to make things better.

A couple of things you don't mention. One is about your leak line. How does that look? Could you be mouthbreathing with the nasal pillows? One symptom is dry mouth.

Another thing is your subjective judgement of what is going on at night with your sleep. Subjective judgement can be very misleading, but how often do you think you awaken and how many hours of sleep do you think you are getting?

I don't have the software package for the DevilBiss Intellipap APAP machine I use. Instead, I rely on its smartcode feature which gives me compliance, plateau pressure (90%, 95%), AHI, non-responding event index, leak time. It's crude but acceptable. The leak data has always been 0, though I believe the machines threshold is pretty high. The software package might be worth getting as it provide more details (e.g. the actual leak rate in L/min. ) However, if I don't use a chinstrap, my mouth opens, I leak air, and wake up. Now that I use the chinstrap, no more waking up with mouth leaks, and my mouth is not dry in the morning. (side note, prior to CPAP I exclusively breathed through my mouth, and woke up every single morning with horrible dry mouth and morning breath - CPAP has treated this quite well

I agree with your comments on subjective judgment. I get about 8 hours a night with CPAP (I check the smartcode every morning). I wake up usually once during the night, often after about 5 - 6 hours of sleep. I adjust my position and fall back asleep pretty quickly.

fiberfan wrote:I thought PLM would responded to mirapex and requip. Unfortunately for my PLM and RLS both meds have bad side effects for me.

Cutting out caffeine might help with PLM, I know any caffeine will make my RLS significantly worse. I drink a diet coke once or twice a year when I have a killer headache - it has to be bad for the headache improvement to be worth the floor pacing I will do that night.

Good luck finding out why you are still tired.

It would be fantastic if cutting the caffeine reduced the PLM's, as you mention the medications for it have significant side effects. We'll find out over the next week or so!

Bob3000 wrote:It would be fantastic if cutting the caffeine reduced the PLM's, as you mention the medications for it have significant side effects. We'll find out over the next week or so!

The doses used for RLS are much lower than the dose range used for parkinsons. I think significant side effects aren't common in the RLS dose range. I have had 2 sleep docs say the serious brain fog I get from mirapex is an unusual response. The itchy legs reaction to requip is just as likely to be a reaction to an inactive ingredient as to the requip.

bob, so sorry you're not quite feeling up to the level of your avatar! i was gong to make a joke about how you're feeling so good now you can protect the president

As far as sleep debt, I also believe that the 'long term sleep debt' doesn't exit -- impairment due to multiple arousals and fragmented sleep stages probably normalized itself after a few days on CPAP (assuming arousals are indeed reduced). However the long term effects like on the brain, the heart, take much longer to heal (e.g. memory). For me personally, when I sleep well I notice it immediately the next day.

I'm split on the "tiredness" issue. I tend to think that the tiredness itself SHOULD resolve itself pretty quickly IF the CPAP therapy is working, and that's ALL that's at play (maybe not 2 days but definitely within a month for someone new to cpap). If it's not resolving, then again I think it's either the usual suspects or an arousal issue assuming the AHI is contained, IMHO:
- the usual suspects: pressure is inadequate, mask leaks, mouth leaks/breathing
- lack of adjustment to CPAP for newbies (that's why i say one month, to get the brain trained to not waking up from the new 'setup') (the one month thing i made up, you gotta put a threshold somewhere!)
- bad hose management causing arousals
- pain causing arousals
- PLM's causing arousals
- APAP changing pressure causing arousals
- GERD causing arousals and who-knows-what

I hate to be a nag, but are you sure you're not still mouth-leaking even with the chinstrap? I could mouth leak even through clamped jaw and lips. That's the first thing i would (still) consider. It doesn't even have to be the whole night, again for me it was only the early morning hours, but it was enough to wreck my sleep.

Anyway, I'm glad your surgery went well. I hope you continue to persevere, both with the CPAP but also your doctor(s) to find the cause of the tiredness.

echo wrote:I hate to be a nag, but are you sure you're not still mouth-leaking even with the chinstrap? I could mouth leak even through clamped jaw and lips. That's the first thing i would (still) consider. It doesn't even have to be the whole night, again for me it was only the early morning hours, but it was enough to wreck my sleep.

I am not 100% certain I don't have mouth leaks, but given that I wake-up from them within minutes if I don't put my chinstrap on correctly (or neglect to put it on at all), I think I'd know I was leaking out of my mouth. Other evidence: my Intellipap reports leaks as a percentage of time spent leaking, I've always had 0%, plus without CPAP I wake up with a terribly dry mouth and bad morning breath. With CPAP I have no dry mouth and my breath is fine. So I think it's unlikely that mouth-leaking is the problem, but of course I am not absolutely ruling it out.