hello. new to this board and to CPAP.

[crestifer]

greetings,

apologies for the long post. just giving my background to establish the context of my questions.

my name is crestifer. male. 45. 6'3" 200lbs.

basically a middle aged dude in good shape other than suffering for years with some major issues that no one has been able to help me with.

i've struggled for over a decade with depression, anxiety, insomnia, and many other issues...including debilitating fatigue.

i've gone from doctor to doctor, seen over 10 neurologists. they have told me i may have everything from cfs to ms to parkinsons to lyme disease to just plain old depression and anxiety. i've been diagnosed with depression, ADHD, and CFS/ME. basically the plan of attack has consisted of getting me on antidepressants and stimulants to help me stay awake and have some activity. none of these meds have helped, they've seemed to only make things worse and worse and worse.

my life has absolutely been put on hold with all of my struggles. i ended a marriage, had to shut down my business, and end my career. i haven't worked full time for 4 years, i survive on my savings and my rental property income. my biggest issues being extreme, debilitating fatigue, blurry vision, motor skill and cognitive issues, balance problems, and extreme depression and anxiety, as well as attention issues.

i've done countless MRIs and other tests looking for any possible problems. a few neuros have thought i may have ms but i've never got a diagnosis as the lesions they thought they saw have not progressed over the last year.

for many many years i was on a constant cycle of trying various SSRI's coupled with sleep meds and stimulants to combat the effects of those. i was a zombie for many many years, and just never felt any better. about 2 years ago i got off all of the meds they had me trying. i decided to focus on an incredibly strict ketogenic diet, and exercising as much as i could. in about 6 months i felt so much better. just being off the meds helped me feel so much better mentally and emotionally the ssri's and sleeping meds were just making my life a living hell. however, physically i was still facing all of my other issues, especially fatigue.

late last summer i finally got into a neurologist who actually seemed to want to help me rather than push me off with more antidepressants. first i got new set of MRIs and CAT scans, then tons of blood work, and finally a sleep study.

i'd had a sleep study about 7 years ago and at that time i had severe insomnia. they basically just gave me sleep meds and sent me on my way.

this time, the sleep study showed i had severe obstructive sleep apnea. i stopped breathing between 50-80 times per hour. the sleep tech in the morning after the first night told me "i honestly don't know how you function day to day if this is how you sleep...you almost never get into rem or deep sleep"

i went back for a 2 night titration and after the 2nd night on a CPAP, i actually felt better than i had in a decade. my blood pressure dropped to a normal level, which it had not been since the late 90's. i had been basically forced to take high blood pressure meds for years because i could never get my blood pressure to drop no matter what i did with diet or exercise. one night on cpap and it was totally normal again.

i'm now currently fighting my insurance trying to get setup with a CPAP through my doctor. my initial appointment with my current neuro was in august. i had the sleep study in october, wasn't able to get in for the titration until december. i had an rx for CPAP from my doc on january 3, the DME contacted me jan 30 and told me my insurance would take 3-4 months to approve. i'm now 7 months in with my newest neuro who found out something that is actually wrong that can be addressed easily, and it looks like it will be another 2-3 months before i can get started on treatment.

since january i've been studying all i can about sleep apnea and about CPAP treatment.

my neuro has prescribed CPAP at 11cwp.

i have informed him i'm not waiting any longer for my crappy insurance to come through for me. the earliest the DME will even have approval for my CPAP and mask will be april..so it will likely be middle to end of may before they can have me setup with a machine.

i can't wait for that, i've been getting worse and worse. after over a decade of trying to find anything to improve my health and my life, i finally found out something i can address, but insurance is holding me and i'm not waiting. i have cashed out some of my savings and i decided to move forward on my own.

so, on the recommendation of some doctor friends, and a friend who has been using CPAP for 10 years... i bought a machine. i got a resmed airsense s10 autoset cpap and i got a few masks to try, including the airfit f20, the comfortgel blue, and the amara view which is the mask they had me used during my titration study.

i've learned how to program the machine, 11 cwp is what my doctor prescribed. i'm leaving it in cpap mode for now, with the ramp function set at 35 minutes, starting me out around 8 cwp. i tried a lower start but i was struggling to have enough air. currently, starting around 8 and ramping up to the prescribed 11cwp is working well. i feel like i have enough air to relax and fall asleep. so far i am adjusting fine to the air pressure.

it's taken a few nights to get comfortable with the masks and get them to seal properly, so far the amara view seems to work best for me. the airfit F20 is comfortable, but after a few hours it seems to unseal and i wake up. i have to keep it really tight to keep it from leaking.

i've now had 6 nights in a row with the amara mask and had a good mask seal all night long. over a 6 night period, i used the machine an average of 6.8 hours per night, my AHI was 1.6, total AI 1.2, central AI .7 and had a leak average of 14L which i mostly attributed to last night when i had trouble keeping the mask sealed. the previous few nights the leaks were in the 1 to 2.5L range.

so i suppose that long intro is to ask these questions:

1. has anyone else had a similar story? one of the very first thing my new neuro said to me was "why has no one had you do a sleep study before?" have any of you gone through years of trying to get help only to finally find out you have sleep apnea all along?

2. how long until i can expect to actually feel less fatigued? i realize of course, i may have been suffering from this for easily a decade or more. is it uncommon to not feel much in the first week or so of using CPAP?

3. thoughts on the AUTOSET feature of the resmed unit? i understand how it works, because my doctor specifically prescribed CPAP at a set 11cwp, i've started with this machine in CPAP mode only. i'm curious what people have experienced using the autoset feature vs. normal CPAP

4. any tips on keeping a good mask seal? it seems to me that it is a normal process to have to go thru quite a few masks to fine the one that works best for each person.

5. it seems to me that in just the last 3 months of my own research, that many doctors just sort of throw people on these machines without giving them very much info. i'm someone who needs to know everything. i've studied sleep apnea non stop for months now, and i feel i've got a fairly good handle on CPAP and what it does. does anyone else currently use a CPAP without specifically dealing with a doctor or DME?


thank you for indulging my long post and for any answers or suggestions. really appreciate any comments. glad i've stumbled across this board.

[Pugsy]

How is your sleep quality? Going to sleep fairly easily? About how many wake ups are you having in those 6.8 hours average?

Welcome to the forum.

And yes, we have many people here doing the cpap thing without a doctors input. I haven't seen my sleep doctor since Aug 2009.

question #2....some people get lucky and have immediate marked improvements after starting cpap. We call it the "miracle"....those people are very lucky and in a minority
Most people find it can take several weeks or months to start feeling huge improvement.
Fatigue is a stubborn little SOB though because there's so much other stuff that can also cause fatigue.
CPAP fixes sleep apnea related problems...it can't fix problems that aren't related to sleep apnea.
Most people find that improvements are very gradual and sneak up on a person.

Sometimes there's a lot of truth to the give it time thing...might as well because it's not like you have another option but to use the machine.

While giving it time it doesn't hurt to investigate other potential culprits for not feel the good numbers.
Hence the question about your sleep quality.
Are you off all meds now are are there some medications that you still take for whatever reason? If so, what?

[kteague]

Hello and welcome. Sounds like you have got a good grip on things and are well on your way to feeling better. As to your questions...

1. Stories of a missed diagnosis or misdiagnosis commonly come across this forum. Sad but true. After a particularly bad experience I felt compelled, for the sake of other patients, to write a letter to the sleep doctor who made multiple misjudgements in managing my early treatment. If you find CPAP treatment resolves most of your health issues, that may be something worth considering. It doesn't have to be an attack, just a basic "you invested a lot of time in searching for a diagnosis so I thought you'd be interested in knowing..."

2. Occasionally someone will report miraculous instantaneous recovery on CPAP, but I'm thinking most of those folks have no need to find this forum. So many who come here are searching for solutions to issues. I personally felt even sleepier the first few weeks, like once my body could sleep without apneas it really craved more and more. At some point I began to feel ready to wake up and face the world.

3. The discussion between a fixed pressure or auto adjusting has loyalists on both sides. I've used both satisfactorily. It really is about personal needs. If I were one who needed, for instance, a pressure of 9 most of the night except maybe when in REM or on my back, I might choose to take advantage of the option to only use a higher pressure when it is actually needed. Higher pressures sometimes come with more leaks or air in the belly, so it may be best to avoid them when possible. My personal pressure needs don't vary enough for the auto to be of much benefit. While my apnea is worse in REM and while supine, my pressure needs don't change much. I've read that there is a bit more data in auto mode, and someone said they use it for that reason if they are having problems they need to troubleshoot. On the flip side, a person could be sensitive to the pressure fluctuations and have more sleep fragmentation. That would not be me. I can't even tell when my ramp starting at 9 kicks over to my pressure of 14. My personal philosophy is as long as my fixed pressure isn't causing trouble, I prefer to have a pressure that covers everything rather than have to wait on machine response.

4. Sorry, I use nasal pillows.

5. If one has garden variety OSA and no complications with treatment, it is manageable without follow-up with doctors. However, someone using their insurance for purchases may have requirements to meet.

[Julie]

Hi, overtightening the mask can create new micro leaks, and you'd be better off trying e.g. Padacheek.com 'liners' (designed by a member here) and loosening the mask so the cushion can inflate properly. You'd also be best if side sleeping vs back sleeping (if you do that) as back sleeping provokes many more apneas (and snores). A Pappillow.com pillow can accommodate a full face mask better so it doesn't get dislodged by a regular pillow.

[49er]

As long as the pressure is correctly set, a person can sleep in any position they prefer.

49er

[Rob K]

Congratulations on deciding on taking matters into your own hands. It doesn't sound like you can afford to wait for the doctors and insurance. It sounds like they are taking a terribly long time.

1-It seems quite a few people on the forum have had a similar experience. I had many appointments, many diagnoses and misdiagnoses, many drugs that made me real sick, improper cpap treatment, personal and work life has gone to heck and so on. Yours sounds worse though, because I only had to deal with it for three years before I gave up on the doctors. That's when I started studying every day, bought my own medical test equipment and started doing my own testing. Recently I found I can adjust my cpap and get free Sleepyhead software to view the data. A few weeks ago I found this forum and they helped me to realize that my cpap treatment had been inadequate. Things are slowly improving and have given me much hope. You can read my thread if you get bored.
viewtopic/t115389/New-to-the-forum--Loo ... swers.html

2-My guess, given the longevity of your condition that it may take several months to fully recover, possibly longer. Keep in mind that all the systems in your body have been degraded for a decade or more. Of course this is just a guess. Given the severity of your apnea, I would think you should see small improvements right away and continue to improve with time. Of course I hope that things go much faster for you.

3-I'm just now in the process of figuring out the proper cpap settings, so I can't say anything about cpap vs apap at this point.

4-I've been through quite a few masks and still have not found a good one, just ones that I can tolerate. This seems to be a never ending process.

5-Except for the occasional visit I'm mostly done with the doctors and DME's thanks to Sleepyhead and this forum. They were not much help other than figuring out that I had apnea.

[crestifer]

just got a moment to post and say thank you very much to everyone who has responded thus far.

i'll be able to get back online later today and will respond to each post.

cheers !!

[crestifer]

How is your sleep quality? Going to sleep fairly easily? About how many wake ups are you having in those 6.8 hours average?

....
Are you off all meds now are are there some medications that you still take for whatever reason? If so, what?

sleep quality is ok, i seem to wake up at least 1-2 times a night and find i have to readjust my mask to keep it from leaking. as far as falling asleep, i suppose easy is a relative term. i find i usually have to lay with the mask on and listen to a podcast or a lecture to fall asleep, my estimate is that it usually takes me 45-90 minutes to fall asleep. so realistically, i may actually only be getting 5 hours or less of sleep right now.


i'm off absolutely all meds except for occasional use of an albhuterol inhaler for asthma, i use it maybe a few times per month when needed. i'm completely off of all SSRI's, sleep meds and stimulants. i have one cup of coffee most mornings, eat very little sugar, have a low carb, healthy fat, lean protein, green vegetable diet. don't drink or smoke. drink a green smoothie almost every morning, take fish oil, multivitamin, calcium/magnesium, and vitamin d3.

my diet is clean, my health...other than high blood pressure and all my issues, is pretty good. i'm hoping that in a few months i can notice a difference if i can actually be getting quality sleep for once.

right now, i'm still struggling...not really feeling much better at all, but mentally feeling excited that i've found at least one thing i know is wrong that i can address.

[crestifer]

Hello and welcome. Sounds like you have got a good grip on things and are well on your way to feeling better. As to your questions...

.

thank you very much for your reply. i'm going out today to buy a new notebook laptop with an sd card reader so i can run the sleepyhead software and start monitoring things a bit closer.

perhaps after a week or so of data, i'll look into using the autoset feature. for now, i'm just trying to get used to the machine, find a mask that seals well, and hope for the best.

cheers !

[crestifer]

Hi, overtightening the mask can create new micro leaks, and you'd be better off trying e.g. Padacheek.com 'liners' (designed by a member here) and loosening the mask so the cushion can inflate properly. You'd also be best if side sleeping vs back sleeping (if you do that) as back sleeping provokes many more apneas (and snores). A Pappillow.com pillow can accommodate a full face mask better so it doesn't get dislodged by a regular pillow.

thanks julie.

i do mostly sleep on my side. it seems right now that i get the best seal with the amara view mask, i'm just trying to find a spot where it seals but is not too tight as some nights it feels like it is pressing my teeth in all night.

i've also got the airfit f20 mask and it is very comfortable, but i've had issues keeping it sealed. i think i need one size down. it seems to rest lower on my chin and i think as i am moving around at night, it comes unsealed. i do have some of the remzzz mask liners, i may try those again tonight with the f20 mask.

i will check out the padacheek liner as well.

thank you for the response and for the links, i will check out the papillow as well.

cheers.

[crestifer]

As long as the pressure is correctly set, a person can sleep in any position they prefer.

49er

right on. i'm mostly a side sleeper, so if i can keep this mask sealed, i'm hoping i'll start feeling some results.

cheers!

[crestifer]

Congratulations on deciding on taking matters into your own hands. It doesn't sound like you can afford to wait for the doctors and insurance. It sounds like they are taking a terribly long time.

1-It seems quite a few people on the forum have had a similar experience. I had many appointments, many diagnoses and misdiagnoses, many drugs that made me real sick, improper cpap treatment, personal and work life has gone to heck and so on. Yours sounds worse though, because I only had to deal with it for three years before I gave up on the doctors. That's when I started studying every day, bought my own medical test equipment and started doing my own testing. Recently I found I can adjust my cpap and get free Sleepyhead software to view the data. A few weeks ago I found this forum and they helped me to realize that my cpap treatment had been inadequate. Things are slowly improving and have given me much hope. You can read my thread if you get bored.
viewtopic/t115389/New-to-the-forum--Loo ... swers.html

2-My guess, given the longevity of your condition that it may take several months to fully recover, possibly longer. Keep in mind that all the systems in your body have been degraded for a decade or more. Of course this is just a guess. Given the severity of your apnea, I would think you should see small improvements right away and continue to improve with time. Of course I hope that things go much faster for you.

3-I'm just now in the process of figuring out the proper cpap settings, so I can't say anything about cpap vs apap at this point.

4-I've been through quite a few masks and still have not found a good one, just ones that I can tolerate. This seems to be a never ending process.

5-Except for the occasional visit I'm mostly done with the doctors and DME's thanks to Sleepyhead and this forum. They were not much help other than figuring out that I had apnea.

thanks rob, it does sound like we have similar stories.

the best thing i ever did was to trust myself and get off all the meds, for many years i was such a zombie with all the side effects of various meds that i was not thinking clearly. every time i'd complain to a doc, they'd just switch meds on me. then i'd find a new doctor and go through the whole thing again.

i went to 3 neurologists in a row who each just blew off my questions and handed me scripts for zoloft or the like. the last one i crumbled up the Rx and set it on his desk as i walked out. by that time i was clear of all the meds and was able to finally be my own advocate. luckily i finally found a neuro who gave me more than 5 minutes to explain my issues, and he actually listened. he got me into a sleep study and set me on my current path.

i've checked out your thread. glad folks here were able to help you. i'm getting a new notebook laptop today so i can run the sleepyhead software and start really looking at my data closely.

i've had quite a few people tell me i'm crazy for not waiting for the insurance to come through for me. i can't wait. it would be nice if my insurance would cover my cpap and supplies, but i really don't care. i'm more interested in getting my life back. luckily my doctor gave me my Rx after some convincing. i understand the liability issues that docs and DMEs face, but i'm a smart guy. i've already studied these machines and seem to more than most of the people i've talked to about them.

my DME told me that they would not recommend that i even attempt cpap without a proper lesson. meh. i know this is just air pressure. i know how to use the machine, i know how to get to the "clinical" settings, i know how to adjust everything. i've read and studied this stuff almost non stop for the past 3-4 months.

when i did the titration study, the tech didn't even fit me with various masks, just gave me an amara view in small and strapped it on. it was way too tight and uncomfortable. she had to get it that tight for it to seal. i've since ordered a large size and it seems to work well.

i'm just not going to wait any longer for the DME to get approval for me. i found a good deal on a resmed machine and i bought a few masks. it't not cheap, but i've already gone bankrupt spending thousands on meds and treatments the last 5 years or so. i just recently paid of my last MRI bill.

i'm just lucky that despite my issues, i'm still able to get around and have a good support system in my family. i feel really terrible for people who face these issues who are much worse off than me and have to navigate all of this. i'm glad i found this board and others, they have provided me with much information.

one thing i've learned for certain with my struggles of that last 10 years is just how messed up our healthcare and insurance systems are.

[Pugsy]

Have you had the vitamin D level checked in the past and that's why you are taking more or do you just take a small dose for a little extra caution?

Even if things were ideal with our sleep...we got 8 hours and a good solid 8 hours of sleep with minimal wake ups....it can take some time to feel the benefits.
If you wonder about others...it actually took me several weeks to months to notice much of a change in terms of energy levels but I did have some initial immediate improvement in the nocturia that was plaguing me. Some things improved straight away but some stuff took much much longer and energy levels was one of the things that took longer.

Over the past coming on 8 years now of cpap therapy I have learned that my daytime energy levels are tied directly to how many hours of good sleep I get...and it needs to be good and I need at least 7 1/2 hours of that good sleep. Good meaning minimal wake ups as well as duration. Oddly for me my daytime energy levels don't seem to be tied to the AHI the night before but others report that they can feel a huge difference with even a relatively small change in AHI.

If you are really only getting 5 to 6 hours of sleep because it takes a while to fall asleep then that's really not enough to expect to see much improvement in overall energy levels. Most people simply need more sleep and it needs to be good sleep with minimal wake ups.

Try to be patient even if you don't feel those good numbers as much as you want or expect straight away. Think of it now as preventive medicine....preventing the damage that untreated sleep apnea can and will do to your body. Do what you can to improve the number of hours you actually sleep. It's tough I know. Getting the required hours of sleep is difficult for any number of reasons. That's a war we never truly totally win.

Study your software reports and post them him for member input. Maybe there's something there that stands out screaming "fix me and you will feel better". It's not always about the AHI.

[crestifer]

Have you had the vitamin D level checked in the past and that's why you are taking more or do you just take a small dose for a little extra caution?

Even if things were ideal with our sleep...we got 8 hours and a good solid 8 hours of sleep with minimal wake ups....it can take some time to feel the benefits.
If you wonder about others...it actually took me several weeks to months to notice much of a change in terms of energy levels but I did have some initial immediate improvement in the nocturia that was plaguing me. Some things improved straight away but some stuff took much much longer and energy levels was one of the things that took longer.

Over the past coming on 8 years now of cpap therapy I have learned that my daytime energy levels are tied directly to how many hours of good sleep I get...and it needs to be good and I need at least 7 1/2 hours of that good sleep. Good meaning minimal wake ups as well as duration. Oddly for me my daytime energy levels don't seem to be tied to the AHI the night before but others report that they can feel a huge difference with even a relatively small change in AHI.

If you are really only getting 5 to 6 hours of sleep because it takes a while to fall asleep then that's really not enough to expect to see much improvement in overall energy levels. Most people simply need more sleep and it needs to be good sleep with minimal wake ups.

Try to be patient even if you don't feel those good numbers as much as you want or expect straight away. Think of it now as preventive medicine....preventing the damage that untreated sleep apnea can and will do to your body. Do what you can to improve the number of hours you actually sleep. It's tough I know. Getting the required hours of sleep is difficult for any number of reasons. That's a war we never truly totally win.

Study your software reports and post them him for member input. Maybe there's something there that stands out screaming "fix me and you will feel better". It's not always about the AHI.

thanks pugsy.

i am taking vitamin D currently because my levels have been low according to the last few sets of labs i've had. i'm getting labs done this week again to check vitamin d and my cholesterol levels.

i've been on vitamin D3 supplements for about a year now, my levels have improved, but it has had zero effect on my energy levels.

i was a 20 year sufferer of insomnia before i finally got that mostly under control. i'm not sure i've ever had a decent period of real solid sleep since i was a kid. i was in the music biz for 25 years and was going 24-7. i didn't sleep at all last night, so i'm hoping insomnia is not coming back too.

it's been a constant struggle. i don't really want to get back on sleep meds. i try to take melatonin some nights, i do yoga and meditate each day, that has helped. i think right now i'm just anxious to start feeling better and it gets frustrating realizing just how long i've been not feeling well. i just need to be patient. at least sleep apnea is something real that i know i can treat.

i try to do everything i can possibly think of to help me in this endeavor. i never have more than 1 cup of coffee early in the am, and i don't drink any other caffeine and i have very little sugar most days. my diet is really solid, i'm not sure what else i can do at this point other than keep trying the cpap and doing all i can to try to get more consistent hours of sleep each night.

i'm resisting taking even tylenol pm at this point because i just don't want to go back down that road.

i just need to give it time.

thanks for your words, appreciate it.

cheers.

[Pugsy]

Bad sleep has many causes and only one on that long list is sleep apnea.
CPAP fixes bad sleep caused by sleep apnea...it can't fix bad sleep caused by something else no matter how much we want to blame all our problems on sleep apnea. It simply isn't that easy. I wish it was...we wouldn't need forums like this and we wouldn't have such a higher "failure" rate for cpap.
I think the bulk of the people who think cpap failed to make them better were expecting cpap to fix a problem that it simply couldn't fix.

There is a lot of truth to the "give it time" thing. We didn't get in this shape overnight but we tend to want to expect to fix something overnight. It's just the way we humans sort of look at the medical field...we like and want immediate fixes and when we don't get them we think there's a problem with the "fix". We don't want to acknowledge the fact that maybe the "fix" is trying to fix something it simply can't fix.
I always tell people to give it time...like we have much choice in the matter...but while giving it time use that time to investigate other potential culprits and work on them. Make sure the therapy is optimal to give it the best chance of working its magic.

I think it was about 3 months into therapy that I really started to notice some really "good" days in terms of energy levels. I got the AHI and optimal therapy (at least on paper) under control fairly easily right from the start.
I thought for sure I would be one of the people who experienced the "miracle" but it wasn't the case. I have other issues that cpap can't fix that messes with how I feel and my sleep quality.
Optimal cpap therapy at least gives me the best chance of effectively dealing with things and limits at least one of the problems I had with how I was feeling.

It might help if you kept sort of a journal reflecting your progression. Hours of sleep (real sleep vs laying awake with mask on) and how you feel along with anything else you might want to remember and compare later.
Some time back I made a machine change and started feeling better. Couldn't quite put my finger on it but was feeling better...more good days. After about 6 weeks I decided to look back at my software reports to see if I could spot anything that might have changed. The only real change was sleep time...I was getting about 45 minutes more on average every night with the new machine. I never could figure out why the new machine let me sleep more but I discovered that the extra 45 minutes seemed to really impact how I felt. I had been averaging 6 1/2 hours and after the new machine I was averaging an additional 45 minutes.

I still don't have the energy I wish I did but then I am older and I have other issues and crap happens.
I did have a chance to get an ugly reminder as to just how bad I could feel when I made a little trip and forgot to pack the long hose so I had to go without cpap for one night. I slept horrible...I felt horrible the next day and made me realized that I had been feeling a lot better than I thought when I got a chance to see how bad I could feel.