Sleep Apnea [updated]

Dan Socie

I've been struggling with sleep for WAY too long (over a year). It's taken over my life. 

 

I ended up at Sleep Clinic yesterday to see what the answer is. I was told it's most likely obstructive sleep apnea but I'd need a sleep study to know for sure. Thing is the sleep study is $3000 and the post analysis is $600. Insurance covers some but not all.

 

Anyone go through this? Any alternatives than this expensive study that's going to tell me what the docs already know?

Kitboo

I'm wearing the "I'm a patient" hat: I went through a sleep study about 3 years ago. I had to report to a sleep study center and spend the night there. 12 EEG leads were attached to my face and scalp to measure my brain waves. 5 (maybe more?) EKG leads were attached to my arms, legs, and chest to measure the electrical activity of my heart. There's a wire thingy that went around my face and was to remain under my nose to measure the airflow through my nose. Lastly, there's an O2 oximeter that's a small clip thing attached to my finger to measure the oxygen saturation of my blood. All these leads and sensors are attached to WIRES that all attach into a box the size of a Hemingway novel (paperback) that hangs around your neck. The process of having all these leads attached to oneself takes about 90 minutes. The glue that attaches the EEG leads to your head only comes off with mineral oil.
Anyhoo, you end up looked like the back of your TV, VCR, entertainment center with about a million wires sticking out of you. Now you get to SLEEP with all that on you. While you sleep there is a camera that films your movement and a sleep study technician is watching you. The place I had mine done was pretty plush and the mattress was one of those Swiss foam memory dealios. I slept about 5 hours which was enough data for them to make the diagnosis of NOT having sleep apnea. Also, because all those wires attached to the box around your neck is connected to the wall next to your bed, you need to ring a call bell to be disconnected if you want to get up to go to the bathroom in the middle of the night. I'm not painting a picture of fun and leisure, but it's really not too bad. At least it's not painful.

Okay,the "I'm a doctor, but not a pulmonologist/sleep specialist" hat is on: There is an alternative study that can be done at home, but my pulmonology friends tell me that it's not as accurate. The only way to definitely diagnose sleep apnea is with a sleep apnea test. If indeed you have it and must be treated with CPAP, your health insurance may not pay for the CPAP without a positive sleep apnea test. All that being said, after the first night with the CPAP just about everyone with sleep apnea has almost instant improvement of their sleep quality with eventual improvement of other symptoms of it (like hypertension).

Hope that helps.

Kevin Walter

What types of problems are you having with sleep?

I am somewhat leery of "sleep clinics." They basically have one product for sale (a sleep study) that everyone who comes to them seems to need.

 

Dan Socie

While I fall asleep I never stay asleep. Once awake it's hard to go back to sleep. I'm tired everyday and have felt like I've 'slept' in months. My athletic performance is suffering as well.

I've taken all sorts of blood tests to rule everything else out. I'm healthy I just can't sleep which if why I ended up at the sleep clinic.

The meeting with the sleep doc was awesome however it was only after when leaving they told me how much. I felt a little duped because if the doc would of said it was "expensive" that I was asked what are the alternatives. He got to split before I got to ask. grrr

Michael Johnson

Are you married?

Does your wife say you snore alot and/or have period where you stop breathing?

 

Dan Socie

I am married and after 17 years she made the call to the sleep center. I also have these hypnic jerks? that thing when your limbs jerk when falling asleep. They are really bad when I'm super fatigued which lately is everyday. So I wake her up a lot - a lot. She's thrilled with that on top of the snoring which usually results in an elbow to make me roll on to my stomach. I'm surprised I'm not single.

Kevin Walter

Did they go through all the standard "sleep first aid" stuff with you?

1) Dark room (no light at all).

2) Always go to bed at same time, get up at same time.

3) No caffeine

4) No alcohol

5) No TV, computer prior to bed

6) No exercise in the evening/prior to bed

Personally, what you are describing doesn't really sound like sleep apnea to me. Patients with sleep apnea typically have multiple episodes of near wakefulness throughout the night, but don't actually completely wake up. They fall back asleep after each episode so rapidly that they don't register consciousness. What you are describing sounds more like insomnia.

How hard are you training right now? Insomnia can frequently be triggered by "over-training."

Dan Socie

I've dropped all stimulants from my diet (sigh...coffee)
Mostly all the alcohol - reduced by a lot though.

yep, no TV, no computer, and evening exercise except for once a week. (which doesn't seem to have an impact). We have room darkening shades and the room is completely dark. I go to sleep now at the same time every night.

Training is light since I'm off the IM plan. Kind wish I was back on 'cause I was so dang tried I had less problems.

I've tried sleep medication (OTC) Tylenol PM, etc and some homepathetic which don't seem to help.

I'm game to try anything.

Thanks for everyone's help.

Michele Cellai

Dan- Your wife, my DH, and the spouses of all my siblings would have a great time (the spouses already do). Basically they swap war stories of sleeping next to us. We are all restless sleepers. That said, we all sleep like the dead and don't wake up. But I have cause more black and blue marks, ruptured vessels in the eye, and um, groin pain, than I care to realize.

Some folks, just had a patient today, go for a sleep study only to learn that they have restless leg syndrome. Medication helps but has side effects.

For me the restlessness is diminished with massage, foam rolling, and stretching before bed. Sounds like you have eliminated common culprits. Best of luck as you continue to search for answers.

Bob Irwin

Dan - I just got diagnosed with obstuctive sleep apnea, so I can relay my expreince and also ask some questions of my own. I went through the test at home protocol. this measures breathing, oxygen, blood pressure, and heart rate. The pulmonologist that went over the results with me indicated that while it wasn't as accurate as the in-house study, that if I have periods when I'm stopping breathing 16 times per hour, then it's accurate enough for a good diagnosis. I had the study done because I was quite fatigued. I actually only did it to humor my doctor so that I could move on to looking for something else. I always fall asleep easily and felt like I slept fine, but still woke up tired. I also don't snore very often - only when my allergies are really bad. I thought it was extremely unlikely that I had sleep apnea - but I was wrong. I started using the CPAP machine last Friday, so I'm still waiting to see, but I do seem to be less tired. Sleep apnea contributes to other serious health issues, so it is really something you need to diagnose and treat if you have it. I can't believe that the kind of study that I had would cost too much to administer and analyze (don't know for sure, because my insurance paid for it). Now a question. I don't have any trouble getting to sleep with the CPAP on (I have long term allergy and sinus issues, so I have the full face mask), but I wake up every few hours and the mask is leaking. The therapist said that it is actually happening because the increased pressure when I start to have an episode is waking me up, and that when I get more accustomed to the CPAP my muscles will relax more and it won't happen. Does this sound right to people who have used one? I know it's not that it's just too loose because the second night it leaked I kept tightening it until it didn't leak any more. I slept fine the last 4 hours of the night, but I had bruises on my nose and forehead. Good Luck Dan!!

Cyclingmaniac

Hey Dan,

Ask your doc if you can do the "at home" test as an option. Less expensive.  Regardless, I recommend that you take the test even if it rules out sleep apnea.  I was diagnosed with obstructive sleep apnea about 3 years ago.  It was to try and get to the root cause of my hypertension.  Sure enough, I stopped breathing 19 times an hour with some episodes where I stopped breathing for up to 90 seconds.   I would go through Stage 1 (drowsiness) to Stage 3, never hitting REM sleep stage and bounce back up to Stage 1 sleep.  Basically I wasn't getting any rest.  I didn't realize that I was missing quality sleep.  After going onto my CPAP, I started sleeping soundly and my blood pressure started coming down (after about 7 months).  Each person is different and there are different levels of severity.  Although your medical insurance may not cover 100%, it may be well worth it.

Given that you do have sleep apnea and given that you go on a CPAP, your wife will be in heaven....however.....WARNING....if you make her mad, she has the ability to stop the flow of air.  It will wake you up real quick because you feel like you are suffocating. 

To Bob: It takes time to get use to the air pressure and also the mask/headgear.  I found that if I hang the air tubing over the top of the headboard, I can turn from side to side with little problem and I don't get tangled up or wrapped up in the tubing.  Give it some time and you will do just fine.  PM me if you have questions or need help.  The bruising of the nose is common.  Try putting a bandaid over the bridge of your nose to provide a little cushioning. 

Dan Socie

We decided to hold off because of cost since insurance won't cover it all. Plus the cost of the solution is also very expensive. I'm going to work on some other ideas first.



Thanks to everyone for their input and support. It's all very much appreciated.



Dan

Linda Patch

Hi Dan,

I feel your pain about not being able to sleep. Like you I would fall asleep, then wake up for hours. Come 4-5 am, I would konk out and be able to sleep until noon if you let me. I did not ever snore, however--just completely disrupted sleep. I tried Rx meds, OTC meds--you name it. After much investigating two two things resolved the issue:

1. Hormone imbalance. I know I'm female and older than you so our issues are different, but hormone irregularities in men are often overlooked. Low testosterone is noted in sleep disturbances. All I know is that once I got my hormones lined up, I sleep most nights like I did in my 20s. I would recommend investigating a workup. If you have some hormones whacked out it's easy to fix, and sometimes treatment is needed only until the body rights itself. Truthfully, in the 40s, weird stuff starts to happen.

2. I had restless leg that was linked to low iron. Again, more common in women, but it does happen in men. The hematologist advised me that iron infusions are covered by most insurance companies to treat restless leg. Seems ins. companies don't care that low iron can ruin your life, your sleep, and make you feel like sh*#, but they will cover infusions for RLS. Go figure. Again, long shot for a man (?), but I sat in the infusion center with all the chemo people for 7 weeks of IV iron. Helped me beyond what I can express.

Just a few other things to get you thinking about things to explore. Not sleeping is horrible. Let us know what you figure out.

Dan Socie

Thanks Linda.



yeah I did all the blood work first and got checked out on a ton of tests before I got to this point. I'm a picture of health. I just don't sleep

bret

As an ENT physician I get to see a lot of patients with sleep apnea.  I have used a take home sleep study called a SNAP test to diagnosis obstructive sleep apnea (OSA) in many of my patients.  The exam correlates well with in hospital "full" sleep studies enough to prescribe CPAP if necessary.  My office manager says the max out of pocket expenses for the study are $250.  OSA can cause serious health problems over time hypertension, right sided cardiac hypertrophy and stroke to name a few.  So a negative study would also be useful information so that they can focus on other causes of sleep disturbance.

Knowledge is power.

 

 

liebs45

Hello. My unsolicited $0.02 - I am a new EN member, a new triathlete though have run 6 marathons over the past decade, and a physician in my 7th year of postgraduate training in Interventional Radiology. I was diagnosed with OSA in 1996 by sleep study when I was in the middle of graduate school, and have slept with a CPAP machine every single night since that day. Yes, every single night. Even when on call in the hospital. Even when traveling. Even when camping. Even when napping. It changed my life. My sleep is actually restorative as opposed to draining. Even though I still only get about 4-5 hours a night because of my fellowship, it is *quality* sleep - which lets me be as nontoxic as possible during my waking hours and gives me energy to train and work and be a husband/daddy. So, if you're on the fence - take it from me, if you have OSA CPAP is totally an effective control. NOT a cure - but a control. I have many friends who are ENT's who have spoken to me about the UPPP and other surgeries but there is no need for me - I use the machine faithfully, and it works. Feel free to message me with any questions. PS - I have lost a considerable amount of weight since being diagnosed, but I still use my machine every night.

Coach Patrick

Dan, please keep us posted on how you are doing. I really feel for you brother...

Jeff Braaten

Dan, I like Bret am an ENT physician and see folks like you all the time. It may be okay to delay the sleep study either in the lab or at home but I wouldn't blow it off totally. Not all sleep disturbances are obstructive apnea by the way. In a lot of ways you sound like someone who has insomnia with hypnic jerks. Insomnia isn't just the inability to fall asleep. Get the sleep study as soon as you reasonably can and see a sleep med specialist.

Dan Socie

Just an update this from a year ago.

I took the sleep study (i have a new job so new insurance) and to oversimplify my results I wake about 20 times. I quite breathing a lot....awesome.

So I was prescribed a CPAP machine and I must say it's really enhanced our love life putting on a mask and attaching it to a machine....oh wait...no...it's not sexy while i've only had it a week the few times i've made it through the night with it on I feel amazing in the morning. Hopefully i get used to it and can catch up on the 3-4 years i've lost not sleeping.

liebs45

Dan - it will change your life. Like I said above, I've slept with the CPAP every night since 1997 when I too had a pretty remarkable sleep study - desatting to the low 80's, EEG interrupted twice a minute, same deal. EVERY night. It's been said that if you don't tolerate the machine then you really don't have OSA - it sounds like you've already reaped the benefits of a good night's sleep with the machine. I actually felt like Rip Van Winkle the morning after my sleep study I woke up and said "Holy CRAP is that what sleep is supposed to feel like?!?" Glad to see you are on the road to better quality of life.

Dan Socie

thanks a lot.

I also did this twitching/palsy type things according to my wife about every 4-5 minutes. Turns out that's just my body trying to wake myself up so i start breathing again. Now according to Steph I don't move at all. The leg and arm movement stops completely when I connect to my iron lung. She's much much happier.

I think my mask/machine works/fits. I'm just not used to having something on my face but i'll figure that out.

Super happy to have resolution to this problem.

Jim Yanoschik

 Dan,

    Just caught this forum topic and glad that your problem was diagnosed and is being treated.  Sleep apnea (complete or partial stoppage of breath) is a very serious medical condition that is linked with High Blood Pressure, Stroke, Diabetes, Acid reflux etc.  At UCLA, they have done brain imaging that show there is cognitive brain loss in patients with Sleep Apnea.  You are literally killing brain cells.  If you are not  breathing properly during the night, then you are not able to get into the deep sleep (N3/4) where your body produces the Growth Hormone and estrogen/testasterone for the repair of your body.  If you have sleep apnea your are 12-15 times more likely to have a car accident.  There was a study in children that had DIAGNOSED ADHD that showed over half of them were cured or got better by doing one thing--getting their tonsils out.  They had Sleep Related Breathing Disorder.  Google sleep apnea and see how extensive the reach of this disease really is on your body.

    The Sleep Physicians have said that the treatment of choice for mild to moderate Obstructive Sleep Apnea (OSA) is an oral device. Most sleep labs will push CPAP/BiPAP because they are Durable Medical Equipment providers.  CPAP is a pneumatic splint to help keep your airway open and is considered the gold standard for severe sleep apnea (AHI greater than 30 per hour).   The sleep test will usually tell you how many complete (apnea) or partial (hypoxia) events you have averaged over an hour.  If you remember from CPR, the A (Airway) portion is head tilt/chin lift.  There are a number of dentists that are now specializing in Oral Appliances (OA) that gently bring the jaw forward to open up the airway so you can breath.  The compliance of OA is much higher.  Before you even think about surgery (UPPP) there is some tests to see if you would benefit from that surgery.  Using sound waves, we can see where the blockage occurs in the airway and better assess if the surgery would even help

    Make sure that the company that is responsible for the CPAP machine takes the time to fit the mask on your face.  Most now come with a humidifier and there are dozens of masks in all sorts of sizes.  It may take SEVERAL visits over weeks to get the correct mask for your face.  I have had some patients wear a baseball cap backwards that really helps the seal of the mask.

    If someone is reading this and snores really badly on their back and when they roll on their side it is not as bad there are shirts that have tennis ball sewn into them to force you to sleep on your side.  There are wedges you can strap on to keep you off your back.   I am very confident that once you start to get more deep sleep (N3/4) you will start to feel a whole lot better.  I am a dentist and started several years ago to get interested in sleep apnea when I started to try and help my pediatric patients get better sleep by a combination of ENT referrals and orthodontics to increase their airway.  If your child snores and is grinding their teeth, I can almost guarantee that there is some airway issues. 

 

 

Dan Socie

Thanks a lot for the response Jim. I'll check into a OA. I'd love to have an alternative to the CPAP. Especially for travel.

...As for brain damage, ADHA, Stroke, i'd agree and i'd also add in depression.

...FWIW the catalyst to get this fixed other than an uphappy spouse is that I had to pull over on a way to 9am meeting because I was too tired to drive.

...My CPAP is pretty tricked out. Besides a humidifier, it also has a wireless modem that sends data back to the company and the technician who fit me calls to checks in. Basically they can tell if i'm have a hard time wearing. The data also goes to my sleep doc so he can monitor progress.

Nemo Brauch

Does it make you sound like Vadar? That could be sexy? Sorry- couldn't resist. I'm very glad you followed through and got this all checked out, and thanks for sharing the experience with everyone. Ya never know who it might help.

Coach Rich

Glad to see you got this resolved! Now post some pictures of the setup, in full racing kit...

Dan Socie

nemo...I do sound like Darth Vadar when I talk with it on...and no it doesn't help

Rich...i'll work on that. Could be very funny looking.

Hopefully this helps me get back on track and start training proper again. I'd be lying if I said it didn't take a toll on life.

Scott Alexander

Posted By Rich Strauss on 19 Sep 2011 08:41 AM

Glad to see you got this resolved! Now post some pictures of the setup, in full racing kit...

Use Rich's "Captain America" teardrop/aero helmet! Priceless!