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Help...Unsure if apnea is causing my severe insomnia
#1
Hello,


Sorry for the very long venting out post but I'm desperate for help and hoping to find some sort of relieve on this forum.

I'm a 38 year old male. I'm kind of a gym rat. I've been going to the gym 3-4 times a week since I was 15 years old. I run approx 9 miles every week and lift weight including body weight exercises. My height is 5 foot 10 and I weigh 175 pounds. So I'm not puffed up with muscles like body builders. I'm very lean with very low to zero body fat. In short, I don't have weight issues (neither excess fat nor excess muscles). However, Iv been suffering from severe insomnia for over 5 years now.

My insomnia has taken on many forms: -50% of the time I would fall asleep immediately but then wake up after 3-4 hours and then cant fall asleep again and just power thru the day. -20% of the time I would fall asleep immediately but then wake up after 6 hours of sleep feeling very exhausted and un-refreshed but still cant sleep again. -15% of the time I would go to bed at around 11pm but then cant fall asleep till 4 or 5am. Once I fall asleep I would wake up without an alarm after only 3-4 hours. -15% I would fall asleep immediately, wake up perhaps once to pee but then am able to fall asleep again and total about 7 and half hours of sleep. Once I wake up I feel like absolutely great. Well rested and refreshed.

I underwent two sleep studies in which the results were that I have mild sleep apnea. Of course, like many insomnia patients I barely got 3-4 hours of sleep during both tests and had to take ambien to fall asleep which doctors say amplify apnea symptoms so I have little faith in the results to begin with.

I tried using CPAP many times (perhaps on 60+ nights) with no avail. I would just lay in bed with the cpap on for hours without being able to fall asleep. I tried it over many years with different masks and cpap devices. I just cant fall asleep. Having a mask on my face doesnt bother me. I actually feel that Im breathing better with it but I just simply cant fall asleep with it on. Sometimes I would fall asleep for a few minutes but would wake up again and not be able to fall asleep again the entire night. I also tried the mouth appliance with the same result. Just lying in bed for hours without being able to fall asleep. What makes this worst is that if I try the CPAP lets say for an hour or two but then decide to give up and take it off its already too late because at that point Im so wound up and frustrated that I cant fall asleep again that entire night. So deciding to put on the CPAP is becoming a decision of: do I try the cpap again which has a 100% chance of me not sleeping tonight or do I not use it and gamble with the sleep chances I listed above.

Oh, and I also went thru sleep therapy treatments twice with two different doctors at Stanford sleep clinic (supposedly a good brand) also with no avail. I maintain a good "sleep hygiene" like not napping during the day, not drinking alcohol at night, using the bed for sleep only, not exercising after 6pm, not using my phone or computer at night ...etc. In fact starting 8 pm I start to wind down my day by being home on my sofa just watching dumb tv: i.e no news, no movies, just light stuff like cooking shows, HGTV, animal documentaries ...etc

Despite the sleep test results I have doubts whether sleep apnea is really the culprit behind my sleep problems. Most articles online about sleep apnea report that apnea patients are not even aware they have a problem to begin with. This means they can go their entire life sleeping 7+ hours every night. They discover they have apnea either because their partners complain about the loud snoring, or because they feel sleepy and un-rested during the day.
Obviously this is not my case. My wife never complained about my snoring. Maybe that's because she is a very good sleeper so I started using a snoring i-phone app to record my snoring and it reported low to mild snoring volume and duration and ranked me in the bottom 30% of those that used the app (i.e. 70% of people that used this app snore louder and longer than me). Furthermore, my snoring is usually only in the first 2 hours or so of falling asleep but then dies out afterwards. Around the time I wake up at 3-4 am there is almost very little to no snoring.

If indeed I do have sleep apnea why is that on the 15% or so nights that I am able to get 7+ hours of sleep I wake up feeling ABSOLUTELY great and 100% refreshed. Shouldn't I feel un-rested and tired even if I slept for 7+ hours like other apena patients?

If indeed indeed it is sleep apnea that is waking me up in the middle of the night why is it that I cant fall back to sleep again afterwards. I get it that Apnea can wake you up cause you cant breath but does it also prevent you from from falling back to sleep again and make you sit in bed for hours wide awake?

Again, sorry for the long post but it's Saturday morning and I only had 3 and half hours of sleep last night despite it being a weekend so feeling very frustrated and agitated. Appreciate any advice or commentary even if it is just to make me feel that Im not alone with this.

Thanks
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#2
Hi Kiko,

I'm in a similar situation. I'm a 44 year old male, 5' 10'' tall, and weigh 182lbs. I'm not a gym rate but always been in good health (although my eating habits do need to improve). I do try to exercise regularly whether it's walking/working out/a little big of yoga. I've been doing judo for almost 5 years and that's a killer workout. I've always been on the skinny side and this is the most I've ever weighed. My body fat could use some improvement but wouldn't be considered fat, although I do tend to carry the extra weight in my belly.

I've had a similar issue with sleeping. My sleeping problems tend to happen in phases and might be related to my neuropathy (I think that's what it is). I have aching pain in my hands and feet that tends to get worse at night. It's not arthritis because it normally happens in both hands and both feet at the same time. Throughout the past decade my sleeping problems have gotten worse. It used to be only about 1 to 2 weeks that I would have problems sleeping (waking up from the pain in my hands and feet and unable to get back to sleep). I would be find for a month or two and then the pattern would continue.

Over the past year and a half, it's gotten worse with the insomnia. I would continue to have the spells but they would be longer and the duration between them would be shorter. I would fall asleep quickly, be asleep for about 2 hours. Wake up around 1 or 2am. Mind would be on the achy feeling my hands and feet and wouldn't be able to sleep. Like having an inch that you can't get your mind off of. The pain wasn't bad just annoying. Finally, I would relax enough to fall asleep about 4am and then wake up for normal day around 6:30 am. That was the first phase...trouble staying asleep. I tried OTC sleeping aides and they worked at times.

The second phase went to trouble falling asleep. I would go to bed around 11pm and lay in bed until around 2am and then finally fall asleep and stay asleep. It would be either my hands or feet again or just overall restlessness. Saw the doctor about this and was prescribed Gabapentin which is used for restless leg syndrome. It also makes you drowsy. First few nights taking this, I was still in the second phase of having major problems falling asleep. I was finding myself just on the verge of falling asleep but would suddenly be alert. I just had this feeling that I might have been holding my breath. I told my doctor and asked if I might have sleep apnea (I just had a friend diagnosed with it). He ordered a test.

Now, I was talking to the sleep lab and found out the cost of the sleep lab and thought to myself forget that. It would have been around $6,000 and would have drained my HRA. Didn't want to do that so I kept persisting. My wife is a pretty sound sleeper but has noticed that I've snored on occasion. I'm not a huge snorer and she only has mentioned that I've snored a few times. Usually funny times, when the dog, cat and I are having a snoring concert. However, there was one time where she said I was actually making a clicking noise and it scared her. She was about to wake me up when I stopped. That's what made me decide to get the sleep study. Actually had two, one to determine if I had sleep apnea and then one with the cpap. Same situation though, I had trouble falling asleep even taking Gabapentin and a OTC sleeping medication. A whopping $14,000 total billed to insurance doesn't help the stress level but such is the US healthcare system. They did come back and say I had moderate sleep apnea (14.9 AHI). I've been doing CPAP now for a month. Now, it's taken me some time to get used the mask. I started out a full face mask but found that too restrictive so I switched the Dreamwear nasal pillows. 

Here's one thing with my journey that I'm finding out. All these problems I've had with sleeping have caused some anxiety issues with sleeping itself. Not really anxiety with the bed or the bedroom but with bedtime. It's been a little bit of a hidden anxiety, not something with obvious external signs. Bedtime and bad sleep have turned into an association. In order to fight this, I've been trying cognitive behavior therapy. I've been focusing on my sleep hygiene, specifically a mental cool down if you will. Previously, I would watch TV and then go to bad. What I've been doing recently is turning the TV off at 10pm. and send the next 30 minutes or so just mentally and physically winding down. I will do some stretches and relaxation techniques to prep me for bed. Relaxation breathing is starting to be effective for me. I'll lay on the floor in the living room, breathe in through my nose for 4 seconds, hold for 2 seconds, and then breathe out for 6 or 7 seconds. As I breathe in, I'll just think simple happy thoughts, nothing specific but general things. Then as I breathe out, I'll tell my mind and muscles to relax. Sounds a little corny I know but I'm amazed at how much tension I've been holding in when I do that. I don't have any set time frame just until I feel ready. I've found myself dozing a few times doing this. it's helped because I'm starting to fall asleep quickly again. Not all nights but have only been doing this part for the past couple of weeks when cpap itself wasn't helping. Mouth breathing or trying to sleep on my side with the mask on is what wakes me up now but that's something for another post, lol

I think I've matched your post in length, lol. For me, it's been about overcoming the negative association with bed time and sleeping. CPAP has helped in that when I do sleep, I feel like I'm starting to get some quality sleep and my qualify of life has improved. But in order to get quality sleep I need to be able to get to sleep first. My goal now is associate bed time with the feeling of peace and relaxation instead of a sense of dread that I had before, not knowing if I would get sleep or not. Not sure if that helps you or not but that's where I'm at right now.
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#3
The same thing started happening to me at about the same age.  But, I rarely exercise and am about 50 pounds overweight.  It also happened to my father when he got near his fourth decade of life.  I find that if I read a book, or watch TV, or do something for an hour or two, I can get back to sleep and wake up at 9 a.m. feeling rested.  Fortunately, I'm self-employed and have flexibility in my working hours.  Otherwise, I'd be in trouble.  I've always suspected its just a symptom of getting older, at least for some of us.  

I finally saw a sleep doctor who diagnosed me with sleep apnea and prescribed a CPAP.  He theorizes that apneas are waking me up and causing an adrenaline rush that keeps me up.   The jury is still out on whether the CPAP will prevent it for me.

I do find that taking Advil, 400mg, before bedtime will often produce a full night's sleep, though I've never figured out why..

You didn't mention your caffeine intake, but I suspect that it, along with similar compounds that are in black and green teas, plays a role in sleep as well.  There's green tea extract in a lot of beverages that are non-caffeinated as well.
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#4
(10-14-2017, 11:36 AM)Kiko2017 Wrote: Hello,


Sorry for the very long venting out post but I'm desperate for help and hoping to find some sort of relieve on this forum.

I'm a 38 year old male. I'm kind of a gym rat. I've been going to the gym 3-4 times a week since I was 15 years old. I run approx 9 miles every week and lift weight including body weight exercises. My height is 5 foot 10 and I weigh 175 pounds. So I'm not puffed up with muscles like body builders. I'm very lean with very low to zero body fat. In short, I don't have weight issues (neither excess fat nor excess muscles). However, Iv been suffering from severe insomnia for over 5 years now.

My insomnia has taken on many forms: -50% of the time I would fall asleep immediately but then wake up after 3-4 hours and then cant fall asleep again and just power thru the day. -20% of the time I would fall asleep immediately but then wake up after 6 hours of sleep feeling very exhausted and un-refreshed but still cant sleep again. -15% of the time I would go to bed at around 11pm but then cant fall asleep till 4 or 5am. Once I fall asleep I would wake up without an alarm after only 3-4 hours. -15% I would fall asleep immediately, wake up perhaps once to pee but then am able to fall asleep again and total about 7 and half hours of sleep. Once I wake up I feel like absolutely great. Well rested and refreshed.

I underwent two sleep studies in which the results were that I have mild sleep apnea. Of course, like many insomnia patients I barely got 3-4 hours of sleep during both tests and had to take ambien to fall asleep which doctors say amplify apnea symptoms so I have little faith in the results to begin with.

I tried using CPAP many times (perhaps on 60+ nights) with no avail. I would just lay in bed with the cpap on for hours without being able to fall asleep. I tried it over many years with different masks and cpap devices. I just cant fall asleep. Having a mask on my face doesnt bother me. I actually feel that Im breathing better with it but I just simply cant fall asleep with it on. Sometimes I would fall asleep for a few minutes but would wake up again and not be able to fall asleep again the entire night. I also tried the mouth appliance with the same result. Just lying in bed for hours without being able to fall asleep. What makes this worst is that if I try the CPAP lets say for an hour or two but then decide to give up and take it off its already too late because at that point Im so wound up and frustrated that I cant fall asleep again that entire night. So deciding to put on the CPAP is becoming a decision of: do I try the cpap again which has a 100% chance of me not sleeping tonight or do I not use it and gamble with the sleep chances I listed above.

Oh, and I also went thru sleep therapy treatments twice with two different doctors at Stanford sleep clinic (supposedly a good brand) also with no avail. I maintain a good "sleep hygiene" like not napping during the day, not drinking alcohol at night, using the bed for sleep only, not exercising after 6pm, not using my phone or computer at night ...etc. In fact starting 8 pm I start to wind down my day by being home on my sofa just watching dumb tv: i.e no news, no movies, just light stuff like cooking shows, HGTV, animal documentaries ...etc

Despite the sleep test results I have doubts whether sleep apnea is really the culprit behind my sleep problems. Most articles online about sleep apnea report that apnea patients are not even aware they have a problem to begin with. This means they can go their entire life sleeping 7+ hours every night. They discover they have apnea either because their partners complain about the loud snoring, or because they feel sleepy and un-rested during the day.
Obviously this is not my case. My wife never complained about my snoring. Maybe that's because she is a very good sleeper so I started using a snoring i-phone app to record my snoring and it reported low to mild snoring volume and duration and ranked me in the bottom 30% of those that used the app (i.e. 70% of people that used this app snore louder and longer than me). Furthermore, my snoring is usually only in the first 2 hours or so of falling asleep but then dies out afterwards. Around the time I wake up at 3-4 am there is almost very little to no snoring.

If indeed I do have sleep apnea why is that on the 15% or so nights that I am able to get 7+ hours of sleep I wake up feeling ABSOLUTELY great and 100% refreshed. Shouldn't I feel un-rested and tired even if I slept for 7+ hours like other apena patients?

If indeed indeed it is sleep apnea that is waking me up in the middle of the night why is it that I cant fall back to sleep again afterwards. I get it that Apnea can wake you up cause you cant breath but does it also prevent you from from falling back to sleep again and make you sit in bed for hours wide awake?

Again, sorry for the long post but it's Saturday morning and I only had 3 and half hours of sleep last night despite it being a weekend so feeling very frustrated and agitated. Appreciate any advice or commentary even if it is just to make me feel that Im not alone with this.

Thanks

It sounds like you've decided that CPAP isn't helpful for you and that sleep apnea is not the cause of your insomnia or even maybe an issue for you at all. You don't seem to want to go in the CPAP direction, which takes a lot of time and commitment to adapt to; it's not an easy trip for most people at all.

Regardless, I would recommend talking to your PCP and asking about a sleep study for insomnia or whatever other work up your PCP thinks is relevant. There are many medical specialty areas that address insomnia.
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#5
Kiko, it would be a huge help if you would get copies of your sleep studies and let us know more exactly the type and numbers of events and impact for oxygen saturation. Thin, fit people have sleep apnea, and it is not nearly as uncommon as you might thing. Furthermore, it may be obstructive or more insidious central apnea which the clinics and doctors are really not very tuned into. Obstructive sleep apnea can come from anatomy of the upper airway, nasal passages and be made worse through sleep position or poor head-neck alignment. Think about whether acute angles of your neck (tuck chin to chest), increase respiratory effort. If that causes increased effort or cuts off your airway, there may be sleep position solutions that will avoid CPAP.

There are variations of sleep disruption that may be respiratory based, and of course unrelated to your respiratory function. If your sleep is disrupted, your will experience the same symptoms regardless of the cause. Starting with your report is just a way to eliminate some of the possibilities. Something else you can try is a recording oximeter to see if lower oxygen levels are occurring when you sleep. These devices are inexpensive and can help you to confirm or refute that your problem is respiratory related.
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#6
Hi Kiko2017,
WELCOME! to the forum.!
Good luck with getting your sleep problems straightened out and also with CPAP therapy.
trish6hundred
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#7
Hi FozzyDeBear,

Thanks for your response. Somehow and in a weird way it feels comforting to know that I'm not the only one out there that has so much problems sleeping. It seems from your post that your sleep problems started with the aching and then developed into something bigger. That fits with what I read about insomnia in that it usually starts small but then in some people it just develops a mind of its own. The good news is that you are able to tolerate the CPAP and its working for you. That's great. I haven't been able to fall asleep with it even once despite trying so many times.

I'm in the same boat when it comes to sleep performance anxiety. After hundreds of very painful and frustrating sleepless nights lying in bed like a freak without being able to sleep while my wife drifts so easily into sleep would make anyone hate sleep and everything associated with it. I even get so frustrated when I see mattress commercials promoting good sleep like its somehow a product that money can buy. I wish it was that easy. Now I just flip the channel when these commercials come on and wait for them to be over before flipping back. That's how frustrating this has become.

Having said I am able to put my head to bed and fall asleep within 10 minutes about 60-70% of the time. The frustration is waking up after 3 or 4 hours and not being able to sleep again. Just sitting in bed trying to talk myself into sleeping. Maybe if I focus on my breath, maybe if I think good thoughts, maybe if I turn on my other side, maybe if I use the restroom, maybe if I read something....etc Before you know it its 7am and you just have to write the night off with whatever sleep hours the night gave you. This is now all too common. Of course, living with people that sleep 8 hours every single day like clockwork doesn't help either. 

Perhaps being on these forums doesn't help with sleep cause it reconfirms our sleep anxiety problems. On the other hand, feeling alone with this disease inst good either. 

Wish you all the best with your sleep journey. I do hope for your and my sake that things improve for both of us.  

Cheers
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#8
Hello Reznik,

My father also had problems sleeping throughout his life. He told me that his father had issues too. However, my dad's sleep problems are no where as bad as mine. Interestingly my brother and my sister have no problems sleeping whatsoever. My sleep problems started in my early 30s. Before that I had no problems at all. I remember in college being able to sleep 10 hours and sometimes even more. Perhaps its age or perhaps its anatomy of the soft tissue that changes over time to cause apnea. 

I do drink coffee but stop at around 11am. Most of the time I drink decaf. I did try to quit coffee for 2 weeks but nothing changed in terms of sleep. I dont drink tea, coke or anything else with caffeine. I also don't eat chocolate for the same reason. 

I experimented allot with OTC medication. Nothing worked. In fact some off them had counter effects and kept up all night. I did take 0.3mg of melatonin for many months. I feel it helped me fall asleep but didnt help with keeping me asleep. After many months I decided to quit cause it is not designed for long term use and I was afraid that I would damage my brain's sleep cells or whatever part of them that are still working.
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#9
Yes, there are parts of me that still have doubts about whether or not apnea is causing my sleep problems. Even if I had apnea I think the bigger problem that I have is that once I wake up I cant fall asleep again. The fact that my brain is so easily aroused when I wake up in the middle of the night is my main problem... I think.

This state of arousal makes CPAP so difficult because if I dont sleep within the first 10 or so minutes from going to bed Im up till 4 or 5am. And the 50+ times that I tried the CPAP I haven't once been able to fall asleep within 10 -15 min. Which means that every night I decide to try the cpap is a night of sitting in bed till 4-5am. Even if I take it off after an hour or so and decide to give up on it and sleep without it its already too late. The damage is done by then and i'm up till 4-5am. Unfortunately my situation is so binary like that when it comes to sleep. Either I fall asleep immediately or Im not falling asleep till 4-5am. 

One of the many many sleep doctors I went to told me to throw the CPAP away. Its not designed for people like me that are suffering from both apnea and easy arousal. He prescribed the mouth guard which I paid close to allot of money to get but had the exact same effect on me as the cpap. Up till 4 am. 

I feel stuck between a wall and a hard place. Every morning when Im in a horrible mode I go online and read about the UPPP surgery trying to find something that would give me confidence in it but the horror stories out there are so bad that I back off immediately. Its a tough situation and I dont know how to get out of this destructive sleepless loop.
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#10
(10-14-2017, 09:39 PM)Kiko2017 Wrote: Hello Reznik,

My father also had problems sleeping throughout his life. He told me that his father had issues too. However, my dad's sleep problems are no where as bad as mine. Interestingly my brother and my sister have no problems sleeping whatsoever. My sleep problems started in my early 30s. Before that I had no problems at all. I remember in college being able to sleep 10 hours and sometimes even more. Perhaps its age or perhaps its anatomy of the soft tissue that changes over time to cause apnea. 

I do drink coffee but stop at around 11am. Most of the time I drink decaf. I did try to quit coffee for 2 weeks but nothing changed in terms of sleep. I dont drink tea, coke or anything else with caffeine. I also don't eat chocolate for the same reason. 

I experimented allot with OTC medication. Nothing worked. In fact some off them had counter effects and kept up all night. I did take 0.3mg of melatonin for many months. I feel it helped me fall asleep but didnt help with keeping me asleep. After many months I decided to quit cause it is not designed for long term use and I was afraid that I would damage my brain's sleep cells or whatever part of them that are still working.

Sometimes taking caffeine in the morning, and not in the evening can make the problem worse.  If your body is craving caffeine because you haven't had any in 12 hours, that can make you anxious and make it difficult to sleep.

Remember this mantra- If it isn't working, try something different.  And don't be afraid to ignore conventional wisdom.  When I was consuming caffeine regularly (I don't have any nowadays), a small amount of caffeine in the evening reduced my anxiety and helped me to sleep. 

And watching a good comedy on TV while in bed (with wireless headphones so as not to wake my wife) knocks me out pretty quickly despite the fact that it violates the convention wisdom that (1) bed is only for sleeping and sex and (2) screens are bad for sleep.  Reading helps too, but usually not as quickly as The Big Bang Theory.

And again, watch out for beverages that have tea extract.  Many of the low calorie carbonated beverages that are popular nowadays have it, and it has caffeine-like properties.
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