CPAP delayed success stories?

[patrissimo]

I understand how the thread on success stories can be very inspiring to those not yet on xPAP, or on it less than a week. For those of us who are on it and not finding relief yet, that thread doesn't work so well, since many of the stories are about relief from the first night or first week. It seems that people regularly post here who have been on xPAP for months and don't feel better.

I read on the other forum that Kaiser tells new CPAP patients that it takes 2 months for sleep fragmentation to consolidate from successful therapy, so they may not feel better for 2 months. I would love to hear success stories from people who did not feel noticeably less tired in the first 2 months, but found that xPAP eventually made a big difference to their daytime fatigue/energy. My questions for those people are:

1) How long did it take for a noticeable difference? A moderate difference? A big difference?
2) In retrospect, were there signs during the first 2 months that pointed to the therapy subtly working?
3) Did you have to change anything in order to start benefiting from xPAP therapy, or did it just take time?

I've read a few stories like this from RobySue (CBT), VikingGnome (BiPap), and a few others. Anyone else? An example:

VikingGnome's VPAP (BiPap) solves his sleep issues: viewtopic.php?f=1&t=86001&st=0&sk=t&sd=a

Thanks.

[sylvie]

Patri,

Not sure how long you've been on cpap, but for, I'd say, sometime between 5 and 6 months I had a terrible time with insomnia. I believe now that this is a typical response to newbies--it is probably the body's way of "freaking out" after getting good sleep and wanting to wake up soon. I don't know, just my guess. Those first 5 to 6 months were sheer hell for me and I thought it was never gonna get better. But somewhere, around the 5 to 6 month timeframe, I started sleeping relatively well throughout the night. I still wake up once or twice but not for too long. I find it amazing that I only need between 5.5 and 6.5 hours of sleep now. I go to bed around midnight and pop awake around 5:30 and I know to get up then because sleeping any longer leads to further apnea, for some reason. Robysue always said to get up when you wake up too. I also use a MAD with the cpap because it allows me to lower my pressure and I don't get aerophagia. If I don't wear the mad, too often I wake up early with bad aerophagia and just have to wait till morning without sleeping because I can't use the mask. I'm really hoping it is just a matter of time till your body "kicks in" and gets used to cpap.

[patrissimo]

I'm gonna add CPAP delayed success stories to this thread as I find them...

Here's DocWeezy on the Zeo community forums: http://www.myzeo.com/sleep/comment/226#comment-226. After several months of APAP he had low AHI but didn't feel any better. He got a Zeo and found he was getting less than 10 min of REM and of deep sleep. What worked for him was tryptophan supplementation:

This is a topic near and dear to my heart! And one that I've discovered is not easily answered.

I'm still relatively near the beginning of my sleep journey, having discovered that being diagnosed and treated for obstructive sleep apnea (OSA) is just the beginning of getting good sleep. This is the story of my personal journey to better sleep.

I have a lifetime of poor sleep, and can remember not sleeping well even as a child. I don't remember a time in my life when I was not tired and exhausted, and even though I didn't let that stop me from doing things, everything became more and more difficult as I grew older and continuing to push through was becoming almost impossible as I approached my mid-50s.

I've now been using APAP (an adjustable version of a CPAP machine) for a little over 5 months now. The first few months were abject misery in adjusting to the machine, claustrophobia issues, mask problems, etc. etc. etc. etc. It was unmitigated hell for the first two to three months.

Getting the pressures tweaked and my AHIs (average number of apneas per hour) lowered was easy, and once the claustrophobia and panic issues resolved, I started sleeping more hours and was up to sleeping about 5 to 7 hours most nights. The numbers were good, mask leaks were very low, everything said that APAP therapy was working for me. I had become religious about sleep hygiene and it did help to extend the number of hours I was sleeping.

But I still didn't feel awake and was still pretty tired most days…not nearly as bad as before, but still not very good. My gut instinct told me that while I was sleeping, I wasn't getting enough deep or REM sleep. So in order to try and get some idea of what was happening there, I bought a Zeo sleep monitor. While it isn't as accurate as a sleep study, I hoped to get some idea of what was happening on a regular basis night after night. It does work! The first several nights I used it confirmed that the bulk of my night was in light sleep, with less than 10 minutes of deep and REM sleep. I was also waking up 10 or more times per night, even if I didn't stay awake for long.

So….even though my OSA was well controlled, I still wasn't sleeping well.

Tried hypnosis; helped some but not much. Tried self hypnosis–same thing. Tried calcium/magnesium with no luck. Can't take

Ambien–makes me totally whacko the next day. Lorazepam cut down on the awakenings, but did nothing to help the sleep stage issue and I don't want to take it long term. Even if they had worked, I don't want to take prescription drugs to sleep on a long term basis.

Started researching serotonin issues…I know I've had serotonin issues throughout my life and anything that has increased my serotonin immediately decreased the crazy carb cravings I've fought my entire life. However, in the past whenever I've taken any kind of antidepressant that increases serotonin, it seriously messed up my sleep and I would only sleep about 2 hours–even the ones that weren't supposed to do that. I wasn't willing to try those again.

In researching medicate databases regarding serotonin/insomnia issues, I found studies linking tryptophan to lessening/improving

insomnia. So I thought what the heck–can't hurt, might even help and I would quickly know if it made my insomnia worse. Most of the studies used anywhere between 1000 and 3000 mg of pharmaceutical grade tryptophan. So I got some and started at 1000 mg per night.

WHAT A DIFFERENCE! The first night my deep sleep jumped to about 20 minutes; REM went to almost an hour. I had half the number of awakenings. Still only got about 6 hours total sleep, but I felt a lot better. Stayed at this level for several nights, with the same results.

Decided to try 2000 mg one night and bingo–deep sleep at about an hour; REM at about 1.5 hours. Every night I take it is similar. Decided to try cutting back to 1500 and see what happened and it still works just as well. Going down to 1000 mg doesn't work.

AHIs (the number of apneas occurring per hour) haven't changed and are still very good in the .2 to .5 range most nights, although there seem to be more nights at the .1 to .2 level. Weirdly enough, the nights with the most deep sleep and REM sleep seem to have the least number of recorded apneas.

I'm now going on about 4 weeks of sleep with more normal amounts of deep sleep and REM, and wow, do I feel the difference! Energy level is getting up there too, but I still have more tired days than I'd like.

Still working on extending the actual number of hours sleep a bit and cutting down on awakenings. I started at a Zeo number in the low 30s…after settling on 1500 mg. of tryptophan every night, I'm now consistently in the upper 60s and low 70s with REM averaging about 14% and deep sleep about 10% of my night. Some nights these percentages are higher and those are the days where I feel the most energetic. Last night I had an 83! (but the card corrupted so I don't know what the breakdown was).

I'm still trying to nail down the details so that I can consistently sleep well, but I also know that I need to accept some variations night to night.

So the bottom line for me was that APAP therapy was only the starting point; for many people they assume that it is the beginning and ending point, even though they don't feel much better. While OSA is obviously a major player in my lifelong sleep issues, I've discovered that other areas needed support in order to achieve better sleep. I'm hoping that over time as I continue to sleep well and my body starts to recover from the chronic and decades-long sleep deprivation, I'll be able to achieve good sleep without the tryptophan. The journey is probably far from over, but for the first time I'm feeling like I'm well on my way and beginning to enjoy the benefits of sleeping.

Geez….I've learned more about sleep and sleep architecture than I ever thought possible!

BTW, one thing I've learned on this journey is that sleep apnea affects more people than most realize...it is NOT a condition limited to overweight, middle-aged men. Recent studies are discovering that jaw and facial structure has as much or more to do with whether or not a person has or will get OSA than does weight.

[Mary Z]

This is a subject dear to my heart as I am working to get better sleep. I might try the tryptophan. I used to think all you had to do was wear the mask and use the machine 100% of sleep time and all would be well. Then I learned that unless you get restorative sleep you body does not repair itself. So the deep sleep and REM sleep are quite important. Thanks for posting.
Mary

[chunkyfrog]

It took over 4 months for me to notice more energy, but the daytime sleepiness started decreasing within a few days.
My morning headaches were gone as soon as I was able to keep the mask on all night (under a week).
This may take longer with insomnia or other problems.