Wondering if anyone can relate to my situation..

[StephenP]

Hi everyone, I've been doing a lot of Googling for the past several months as I've gone through all the requisite appointments to find out if I have sleep apnea.

I'm 24 years old, 6'3", 350 lbs -- obese by all standards. Most of my life I've battled with sleep, but I think I just got used to waking up tired, dragging myself out of bed, and going to school. Sometimes I'd wake up with headaches. Many times I'd come home and take a 3-hour nap. I just figured it was a fact of life that I never felt rested unless I could sleep til noon. In college, the fatigue got worse, and my concentration and memory were down the toilet. I never had good study habits throughout school and still managed to make As and Bs, but in college this lack of discipline caught up with me, and I actually failed 2 or 3 classes. When I graduated and started my career (I'm a full-time editor/writer, among other duties), it finally hit me that I'd have to find a solution to my horrible focus, memory, frustration, and lack of energy. The first thing that came to mind was ADD, and I began seeing a psychiatrist over a year ago. All of my symptoms aligned with ADHD non-hyperactive, he's had me on Vyvanse (basically the new adderall). These meds have helped alleviate the focus and motivation issues, as well as allowing me to go all day without wanting to crawl under my desk and take a nap. I felt like my potential was unlocked, and have since earned high praise, raises, and more responsibilities at work over the last year.

But once my body adjusted to the stimulants, I started to notice the other symptoms of sleep deprivation-- although I could focus, I was becoming depressed and cranky again. Of course, the challenge of getting out of bed has never subsided--sometimes difficult to resist the urge to call in sick. I just assumed everyone feels this way at 7 am. And lastly, the biggest sleep-deprivation symptom of all: I wasn't as smart as I felt. Stimulants don't make you smarter; they simply allow you to make your poor decisions with confidence. In short, there are too many days, regardless of the amphetamines in my blood, that I still feel like I could nap. After tons of personal research and considering my other symptoms (loud snoring, ocassional headaches in the morning, obesity), I decided to have a sleep study.

To summarize, My initial sleep study was last month and produced the following results:

1. I had 0 apneas, and an average of 14 hypopneas per hour
2. I changed sleep stages 33 times per hour
3. My REM sleep was delayed (ocurred 144 minutes after sleep onset) and was shorter than it should be.

Based on these results and my reported symptoms, the doctor recommended CPAP therapy. I am going back for a titration on April 27, but Tuesday they started me on an auto-PAP to use at home, which they said would also help me get used to the mask. When I was trying on masks, the nasal ones with the comfort gel were the most comfortable to me. However, I told the technician that I frequently breathe through my mouth when I go to sleep, as I often get one stuffy nostril when I lay down to go to bed, and I think I've just settled into the habit of sleeping with my mouth open. So, I went home with a full-face mask. I'm sorry I can't provide details on the brands/models of my equipment right now because I'm at work. I do know the machine is a Philips brand with a heated humidifier attached.

The first night (Tuesday) was awful, which I figure is normal. I was able to sleep two hours with it. At one point, I woke up to higher than normal pressure, causing some leaks, so I turned the machine and back on again, which made it go back to the slow, smooth air. The second night was slightly better. I slept about 4 and a half hours before having to take the mask off. The biggest issue that seems to make me want to take it off after a while is the claustrophobic feeling of it. When the air is blowing, it's cool, fairly moist, and comfortable, but then it stops when I exhale, which briefly causes a warm, stuffy sensation in my face-- so, it's just this constantly hot/cold fluxuation that makes it hard to go to sleep (especially for someone who loves the room to be cold, with a constant overhead fan).

I've been trying to stay diligent in managing my allergies so that my nose is not so bad at night. Last night I used nasal strips, which, if my nose is not already stuffy, seem to double the ease of breathing through my nose. When I woke up last night, I was breathing through my nose. So, today I am getting a nasal mask to try out to see if I can manage to sleep with my mouth airway closed.

I apologize that this is so long, but I wanted to make sure I didn't leave out anything important prior to asking the following questions:

1. Does anyone have a similar problem with partial congestion at night? How has it affected your PAP machine use?
2. Does anyone here use CPAP and have OSAHS as mild as mine seems to be? Has it produced drastically positive results in mood/wakefulness? The sleep doctors told me my apnea was considered mild (14 hypopnea episodes/hr), the internet concurs with this, and my primary care doctor even told me before referring me to the sleep clinic that I might only have mild sleep apnea, in which case CPAP may not help me. The sleep doctors, however, never even mentioned the possibility of my OSAHS being too mild for CPAP benefits. It makes me a little apprehensive to be investing so much time, money, and sleep deprivation into this. I've never been all that patient with achieving long-term results when I don't have a firm grasp of what to expect.

Any help is appreciated!

[Janknitz]

I can relate to the nasal congestion and to that claustrophobic feeling. Here's a couple of suggestions:

1. Try using a nasal rinse to clear out your sinuses at least an hour before bed. If you're up to trying a "netti pot" or orther sinus rinse that is best--I'm not up for that, but I use a saline mist spray and blow my nose out really well following that. Ask your doctor about steroid nasal sprays to treat your sinus allergies.

2. Experiment with the humidity setting. I get more congested when my humidifier is set higher, but increasing humiidy helps congestion in most other people.

3. You probably CAN use a nasal mask. Some people here use chin staps (doesn't work on me as I have no chin!) or tape their mouth to keep it closed (do a search for "mouth taping" n this site), but once I can clear out my nasal congestion (nasal mist plus allergy meds) I'm fine keeping my mouth closed (and I thought I was a confirmed mouth breather). My favorite is nasal pillows.

Good luck!

[Jersey Girl]

Dear Stephen,

Hi and welcome to the forum! Yes, I do tend to get kind of congested at night, and often. I seem to have sinus issues. So, I use AYR saline nasal rinse every day. I also use Astepro prescription nasal spray at night (it has antihistimine in it, but no addiction/rebound affect like with Afrin). I am not a mouth breather, but if I was, I would probably use a papcap (from http://www.pur-sleep.com) and a nasal mask, or a full face mask.

My AHI was under 5 except during REM sleep (dream sleep) and then I was up to 19 per hour. So, mine is very miled also, but, that is what I tested for sleeping only for 6 hours with all the wires on me. I have been extremely fatigued for 7 years! After just one night on the mask, I felt more like me again. I don't feel fatigued any more.

I also purchased 2 cpap pillows - one from http://www.contourliving.com, a memory foam which has generous cutouts for your mask on each bottom corner and a Regenesis buckwheat hull cpap pillow from http://www.pur-sleep.com. It allows me to run my hand over the pillow and make a spot for my mask (works kind of on the same concept as a bean bag chair that we had when we were kids.)

I think that the toughest part about cpap is finding the right mask for you. Mask choice is very personal, but it does pay to try different things. I tried 4 masks and the 4th one was a charm - my favorite is a Swift FX with nasal pillows. I also have a comfort gel nasal mask, a Mirage Soft Gel Nasal Mask, and a Swift LT for her with nasal pillows. I purchased a comfort gel full face mask just in case I get a really bad cold and cannot breathe through my nose at all.

Cpap treatment is a journey and we are all here to help you.

Wishing you peaceful, restorative sleep,

Jersey Girl

[Birddog]

Welcome Stephen,

I have always had sinus allergies and always been overweight even in high school. I have to sleep sitting up in the recliner when the allergies get bad
and am allergic to most stuff outside trees and grasses.i use nyquil and sit up when it is bad.I have a deviated septum that my doctor wanted to operate on but i heard some say it doesn't make alot of difference,i don't know.The humidifier is a godsend though and i had chronic bronchitus before i started cpap therapy and the humidity has made it where it isn't near as bad. Good luck to you Stephen

[Janknitz]

. At one point, I woke up to higher than normal pressure, causing some leaks, so I turned the machine and back on again, which made it go back to the slow, smooth air.

Your autopap machine probably has a "ramp" button. This is set at or below your lowest pressure and slowly "ramps" up to the pressure you need. So if you wake with high pressures and you're uncomfortable, instead of turning off the machine and starting over, you can simply hit the ramp button and the pressure should drop down. Sometimes when the ramp is set lower than your starting pressure, it can feel like you aren't getting enough air in when you hit that button, though. We can help you increase the ramp pressure if we know which machine you are using.

Try to write down the name of the machine (including model information, not just the brand) and your mask so that we can help you more.

The biggest issue that seems to make me want to take it off after a while is the claustrophobic feeling of it. When the air is blowing, it's cool, fairly moist, and comfortable, but then it stops when I exhale, which briefly causes a warm, stuffy sensation in my face-- so, it's just this constantly hot/cold fluxuation that makes it hard to go to sleep (especially for someone who loves the room to be cold, with a constant overhead fan).

Your machine may have a feature where you can turn down the exhalation relief and have a more steady flow of the cool air. Most people don't like that because it takes some effort to breathe against the pressurized air, but you may like it better and we can help you figure out how to make the flow more steady if we know what machine you are on.

[echo]

Hi StephenP! I won't go into too much detail as you've already had quite some good answers, just would like to mention that if you register on the site and fill in your equipment, it would be a great way to join us officially, and we can help you better if we know your equipment.

The exhale problem can be because you have the EPR or the C/A-Flex setting turned up, which lowers the pressure when you breathe out. You can disable that. If you post your equipment (or better yet register and then fill in your equipment on your profile ) someone can give you tips on how to change that.

The amount or severity of apnea does not necessarily correlate with how much damage it has done to your body. It's not only the arousals from the events, but also the amount of blood oxygen desaturation (which could be very high even with a 'moderate' AHI) which causes the damage from OSA. Even with 14 events per hour (that's NOT mild in MY book) you WILL get SIGNIFICANT relief. Really. Just calculate that every 4 minutes your oxygen levels dropped by more than 3% or 4%, and more significantly you changed sleep stages EVERY TWO MINUTES. Your brain is CRAVING both oxygen and consistent sleep.

You should also request and get a copy of not just the doctor's dictated results (1-2 pages each) but also a copy of the full scored data summary report w/condensed graphs (5+ pages each) for the sleep evaluation.

And start reading the Wiki, there is lots of good info there, it's the yellow light bulb at the top.

Welcome to the forum and to being a hosehead

[kteague]

Hello and welcome. Few thoughts on your study... How many of your hypopneas caused arousal? All those sleep stage shifts per hour can't be good - does the study say if they are caused by the hypopneas? How were your oxygen levels? What does it say about limb movements? If your fragile sleep is due to your breathing, and your daytime symptoms are the result of this, you have every reason to expect to benefit from cpap therapy. The mild, moderate or severe range does not run parallell to the degree of impact on a life. Too many variables. One person's few events may each be profound and prolonged, while another's severe rating may consist of many short bursts. Anyone who is symptomatic stands to feel a difference, and those asymptomatic can reap the underlying health benefits.

Hopefully breathing filtered air will help your congestion, especially if you are using one of the fine white filters too. Best wishes.

Kathy

[StephenP]

Wow, I do appreciate all the comments! I'm generally a big fan of any new electronic gadget in my home, but this one has been difficult to dive into -- I guess because I'm so damned tired after two bad nights.

I went ahead and registered and entered my equipment information, though I didn't see an option that indicates my REMstar System One has A-Flex. I hope all the info will be useful for you in helping me get to know all this equipment. It was all kind of thrown at me with a mediocre orientation (I had to visit Apria, and a technician glossed over the basics, showed me two masks, and then had to change the bill he'd printed up because I didn't choose the first mask he showed me).

I bought the comfortgel nasal mask today and went home to take a 30-minute nap with relative ease. I like it much better. It's easier to sleep on my side, and it feels less suffocating. I think I did OK as far as keeping my mouth airway closed. I see there is an SD card in the machine, but I have no idea what to do with it to see data on my own.

1. Try using a nasal rinse to clear out your sinuses at least an hour before bed. If you're up to trying a "netti pot" or orther sinus rinse that is best--I'm not up for that, but I use a saline mist spray and blow my nose out really well following that. Ask your doctor about steroid nasal sprays to treat your sinus allergies.

I actually have a Neti pot that I don't use as often as I should. I bought the saline mist yesterday and actually prefer that. I also bought Afrin for emergencies, but kind of afraid to use it. The last thing I need is rebound congestion

How many of your hypopneas caused arousal? All those sleep stage shifts per hour can't be good - does the study say if they are caused by the hypopneas? How were your oxygen levels? What does it say about limb movements?

The notes say I had nonrestorative sleep due to poor sleep continuity and poor sleep depth. The sleep depth was poorer than normal because it was an overall bad night at the sleep clinic. I felt like I hadn't slept at all, though the results show 3.7 hours of sleep with "no difficulty maintaining sleep." There are other notes that say I show signs of stress-related psychophysiological insomnia because of my difficulty falling asleep at home and the fact that it only took me 18 minutes to fall asleep at the clinic, and my elevated heart rate that followed most of my arousals.

I had 20.7 transient arousals per hour asleep, and later it says 4.8 arousals per hour asleep -- not sure of the difference, but apparently I had 15.8 "spontaneous transient arousals" which is normal. 15% of my sleep was Stage 1 NREM sleep, which is considered high. 7.1% of my sleep was REM.

And maybe you guys can help me interpret this part: "13.4 events/hr asleep, with a mean SaO2 during events= 92.5% moderate; lowest SaO2 during events=88%, waking baseline SaO2= 100%.

And as far as limb movements, it says I had no periodic limb movements of sleep, and there was no evidence of any other sleep-related movement disorder.

Hopefully this information means something to you so I can figure out how much CPAP really is going to make me feel better in the short- and long-term.

Thanks!

[echo]

And maybe you guys can help me interpret this part: "13.4 events/hr asleep, with a mean SaO2 during events= 92.5% moderate; lowest SaO2 during events=88%, waking baseline SaO2= 100%.

So that would be oxygen saturation of arterial blood (which is weird normally i thought they measured Sp02 with a finger clip)...anyway it's the amount of oxygen in your blood that is available for your body's organs, cells, everything.

13.4 events/hour is most likely the AHI = average number of apnea's and hypopnea's per hour
Waking baseline = 100% so that's great and normal.
mean Sa02 = 92.5% => on average, your blood oxygen is dropping by 7.5% compared to your awake state, when you are having apnea/hypopnea events
lowest Sa02 = 88% => that's the lowest blood oxygen reading they measured. So not _too_ bad (compared to some people's drops into the 60% levels!) but still, that's quite a dip and can explain why you're getting the mental symptoms, you're brain's not getting enough oxygen at night. Add that with the arousals and frequent sleep stage changes, and you're not getting any decent sleep at all. Chronic sleep deprivation basically.

Just to see the effects of that low oxygen levels... get a pulse-oximeter... hold your breath until it drops to 88%... i bet you can't do it without passing out! I've never been able to simulate that low of a reading while awake, so it's kind of scary to think that we get that low during sleep!

The CPAP WILL HELP!

EDIT: For more definitions and explanations of what those words in your report mean: wiki/index.php/Category:CPAP_Definitions

[StephenP]

So last night was OK. I didn't even "try" to sleep until about midnight, though, probably because of general apprehension. I've always had anxiety issues and a fear of failure, which makes it difficult for me to get in motion to complete a task. I start something, then abandon it indefinitely with the mindset that I have not failed and am simply taking a break from it (which creates even more anxiety). I never thought I'd have that same kind of anxiety about sleeping, though. But with this new machine thrown into the mix, I guess I'm subconsciously terrified of sacrificing time, energy, money, and sleep to get used to it, only to realize several months down the road that I still feel like a tired mess in the mornings and late afternoons.

I took a melatonin, some valerian root, and a Unisom tablet (welcome to the life of an insomniac) and was off to sleep in no time at all. I used the comfortfit nasal mask (with the blue gel). I struggled for a few minutes with getting the fit right. If I'm on my back, the fit is easy and light. But I've never slept that way. I've always been hybrid stomach/side sleeper (literally positioned halfway on my stomach and halfway on my right side with one knee bent). I also sleep with my right arm up under my pillows. I have to tighten mask a lot more, and it feels different-- mainly, the bottom part is either too tight (the gel bending/mashing against the space above my lip), or too loose (leaks when I move my face or head slightly).

After I've tightened it enough to stop leaks, the main problem with the nasal mask in this particular sleeping position is that the air seems too slow. When I try to breath naturally, the mask feels warm, almost like I'm trying to breathe with the machine off. I have to adjust it so that the top of the mask tilts outward more than the bottom. Otherwise, I'm working too hard to get that air that's coming from the front middle to go under my nose and through my nostrils--like I'm putting my nostrils against a surface and trying to breathe deeply. Getting good airflow is hard to do on my side and manage to avoid leaks. I need to toy with it some more I guess. When my wife's alarm went off at 4:30 a.m. this morning (she's a teacher and had to get to school early for something), I woke up as well, with slow-moving air, and couldn't go back to sleep with the mask on. I normally sleep through her alarm. When I woke up for work at 7:30, I had stomach cramps and bloating, which means I swallowed some air. Is there a way to prevent this, or is it just something that goes away/you get used to over time?

Also, someone mentioned that my Auto machine may have a feature that can allow me to disable or adjust the ramp setting. I'm a bit claustrophobic when the air is thin and warm, and I think I'd rather have intense airflow than feel like, with every breath, that last bit of air I need is just out of reach. So, any help on adjusting that is appreciated.

Finally, can someone who is familiar with my machine tell me how to view the data being recorded by the Auto-PAP? I haven't taken the SD card out, but I'm curious if the information on it is understandable, and if I need to buy some kind of software to view it.

[Janknitz]

Hi Stephen, hang in there, you're doing great for a newbie.

You may find it helpful to check out some videos on YouTube--look for the "CPAP Choice" channel. "Pappy" has videos explaining the machines you have, often abbreiated around here as "PR S1" (Phillips Respironics System One). There are two sets of three to four videos on this family of machines. The Overview set covers the machine basics, and then there are the CPAP menu reviews that will explain each feature in the patient control area (and some in the clinician's control area, although he does not explain how to get into the clinician's menu). This is way more detail than you will ever get from your DME or the pathetic manuals that come with the machines.

After viewing these videos you will have a much better understanding of the machine and what it is doing and how to make adjustments for your comfort like turning the ramp up or down and the flex options. Much better than trying to explain it all here.

Next you may want to contact your supplier about trying other masks. I found the comfort gel extremely uncomfortable for side sleeping for just the reasons you state. I'm using a nasal pillow system now and it is much better for the position you sleep in, though you may still need to do a little tweaking on the straps to accomodate your position (loosen the straps on the "pillow" side and tighten the ones on the "sunny" side just a bit to accomodate how your pillow pushes the mask. Remember, most masks work on some sort of air cushion technology, and if the mask is smashed hard against your face, the air cushion can't fill and seal properly. Adjust straps only during the inspiratory phase (when you are breathing in) so you can take advantage of that technology.

Pappy also has a few very good nasal mask reviews on the CPAP Choice channel--check out especially his reviews of the Activa as that might be a good choice for you, too.

[TheTwinsMom1]

The quattro mask I use has worked out pretty well for side sleeping. It has a pretty low profile and I have not had many issues with leaks. You can see it in my signature line. You should like you are off to a good start, but as others have said, you may need to try several different styles, and types of masks before you find the perfect one for you.

[SleepingUgly]

2. Does anyone here use CPAP and have OSAHS as mild as mine seems to be? Has it produced drastically positive results in mood/wakefulness? The sleep doctors told me my apnea was considered mild (14 hypopnea episodes/hr), the internet concurs with this, and my primary care doctor even told me before referring me to the sleep clinic that I might only have mild sleep apnea, in which case CPAP may not help me. The sleep doctors, however, never even mentioned the possibility of my OSAHS being too mild for CPAP benefits. It makes me a little apprehensive to be investing so much time, money, and sleep deprivation into this. I've never been all that patient with achieving long-term results when I don't have a firm grasp of what to expect.

You had 14 events/her that night, under those unnatural circumstances, as measured by that sleep lab. (You're probably wondering what all the italics is all about, huh?!) First, not all respiratory events are detected with the ways most labs measure these things. Second, there is great night-to-night variability, so just because you fell in the "mild" range one night, doesn't mean you aren't in the "severe" range another night. Third, there are people who have UARS with an RDI of <5 and they can be very impaired due to more subtle sleep disordered breathing that fragments their sleep. So, absolutely "mild" apnea can turn you into a train wreck. There is no connection between the severity of apnea and sleepiness. Some people have "severe" apnea and feel great during the day, and others have mild and can't function.

There is no predicting just how much of a difference CPAP will make in your sleepiness, cognitive issues, and mood. But you have a treatable disorders, which at best with improve all your symptoms and at worst will hopefully prevent secondary disorders that untreated apnea can cause.

One thing to keep in mind is that Vyvanse is very long-acting, so it could disrupt your sleep (Were you taken it off it for a period of time prior to the study?), could exacerbate insomnia, as well as lower your arousal threshold. It also could cause irritability. Obviously I don't know if it is doing any of these things in your particular case. At some point, if you haven't made the progress you want to make with CPAP, you may want to consider going off the Vyvanse for awhile to see if that will improve the variables I just mentioned so that you can possibly see more results with CPAP. Maybe once you are adequately treated with CPAP, you won't need stimulants. But keep in mind that withdrawing stimulants can cause increased sleepiness temporarily, so don't draw any conclusions too rapidly. Once your apnea is treated, and this has been confirmed by a sleep study, and enough time has passed to see benefits from it, you should revisit your ADHD diagnosis. It may be that your symptoms were caused by your sleep disorder.

Best of luck.

[StephenP]

Thanks for the additional advice. My whole reason for going through all this (doctor visits, sleep studies, CPAP, etc) is because I believe my lack of focus/fatigue is sleep-related. The Vyvanse has alleviated the symptoms and allows me to function, but taking amphetamines for the rest of my life does not seem ideal. As for my other symptoms (insomnia, light sleeping, stress, irritability), they existed before I started the medicine. It worsened my insomnia for a few weeks until those side effects subsided, and it helped my mood. Vyvanse, while long-acting, doesn't have a crash effect like other similar medications, and therefore is less likely to cause anxiety and aggression. I also lost 15 pounds the first month before my appetite came back to normal. I take it every day, including the morning of the sleep study, but I always take it before 9 a.m.

I don't feel like my sleep study captured a real night's sleep for me. I actually felt like I hadn't slept at all that night, while at home I at least dream, and get 7 hours or more of sleep. I get stressed out when I don't feel like I'm going to sleep well, and it just makes it even more difficult to fall asleep. On top of that, I made the mistake of checking my work e-mail that night before I went to bed. I was set to lead the development of a huge proposal, but it wasn't supposed to begin until late April. Turns out the Government decided to issue their solicitation that evening. So, I had that looming over me all night--knowing I'd be going into work the next day (it was a Friday night) for endless, slow meetings.

I kind of feel like I should do another non-CPAP sleep study, but I guess the titration next week should determine how bad my apnea really is -- if I can sleep.

I went into my machine settings/info today and saw that my average AHI over the past three days is 1.4. Should this number be 0 if the therapy is working? Just curious.

Also, apparently my pressure has been 8.4, 90% of the time the machine has been running. The nasal mask is my current preference, but I think I need to use nasal strips with it. My sinus walls seem to collapse when I breathe, so the mask feels almost suffocating at times.

[twasbrillig]

Stephen -

I am wondering if you actually have Upper Airway Resistance Syndrome (UARS) You might want to look at Dr. Stephen Park's page about it. (Just google, I am sure you'll find it) UARS is slightly different than OSA, because UARS patients have more sleep disruption without as much apnea and hypopnea as the typical OSA patient. Some sleep labs do not measure the disturbances which are primary in UARS, respiratory-effort related arousals (RERAs)

And insomnia seems to be a much more prevalent symptom with UARS. (I really sympathize about your insomnia with CPAP. PM me if you want to hear more of my story) I would recommend doing Cognitive Behavior Therapy for Insomnia (CBT- I) It really helps deal with sleep issues that are related to stress, bad habits, etc. It doesn't fix your underlying medical problem, but it will help you see how much your sleep is being helped by CPAP, by reducing the other issues that affect your sleep.

The consensus seems to be that folks with UARS have a more sensitive nervous system, and are waking before their system has much O2 desaturation. Sleep fragmentation is extensive, though, and produce ALL the symptoms you describe. CPAP is the prescribed treatment, but some folks who have delved into understanding UARS have stated that CPAP doesn't seem to be as successful for UARS patients.

Twas