Sleep Apnea Support Group
Sleep apnea is a common sleep disorder characterized by brief interruptions of breathing during sleep. People with sleep apnea partially awaken as they struggle to breathe, but in the morning they may not be aware of sleep disturbances.
I am a migraine sufferer and after a couple of years of my daily regimen of 25mg Topamax no longer keeping my migraines at bay, I sought treatment from a neurologist. I had a CT scan of my sinuses (nothing), an MRI with contrast (nothing there either) so the neurologist put me on a medication and sent me on my way...and a bill. I wasn't happy so I sought a 2nd opinion from a neurology group about an hour away. No need for another MRI, but they did do an x-ray of my cervical spine due to my gait (said my shoulders and head are forward when I walk) and the doctor increased my Topamax to 75mg a day.
A couple of weeks later, I had my appointment to discuss the results from my sleep study. Turns out, I don't have a neurological issue. I have upper airway resistance syndrome, or obstructive sleep apnea. This was a major shock to me because I didn't think I had a sleep problem. Sure, I have been on sleep medication since 1996 because I am a shift worker of a stressful line of work, and in graduate school to boot so I can't turn my brain off (I'm constantly stressed and thinking), so I take Trazodone to fall asleep. But, according to the sleep study, my problem isn't falling asleep, it's what happens WHEN I'm asleep. I forget the numbers now, but he said that over the period of an hour, there were an alarming number of instances where I awaken from a deep sleep. There were also several instances where my breathing is obstructed, or I stop breathing. None of this I was even aware of, to include the fact that I was unaware I snore.
So, now I'm supposed to go back to have yet another sleep study so I can be measured for a CPAP machine. I have to say, I have been in denial of all of this and have been avoiding making an appointment to have this 2nd sleep study done. I just can't believe all of this, I am so overwhelmed. I have the handouts the doctor gave me, and the top handout sits here and glares at me "Sleep Apnea and Cardiovascular Disease". I've been warned of the dangers that sleep apnea has on a person, cardiovascular disesase, stroke, etc. Plenty of reason TO get the CPAP, but I am in denial. I read all of these forum posts about the difficulties people are having with their machines, having sore throats from it, not liking the mask, etc. I had to wear a boot at night for a foot condition and I couldn't last even a couple of hours....what is going to happen when I get this CPAP and it turns out to be a horrible experience? I'm a side sleeper, what am I going to do if I can't sleep on my side?! Aaaaaagh!!! This is stressing me out.
A couple of weeks later, I had my appointment to discuss the results from my sleep study. Turns out, I don't have a neurological issue. I have upper airway resistance syndrome, or obstructive sleep apnea. This was a major shock to me because I didn't think I had a sleep problem. Sure, I have been on sleep medication since 1996 because I am a shift worker of a stressful line of work, and in graduate school to boot so I can't turn my brain off (I'm constantly stressed and thinking), so I take Trazodone to fall asleep. But, according to the sleep study, my problem isn't falling asleep, it's what happens WHEN I'm asleep. I forget the numbers now, but he said that over the period of an hour, there were an alarming number of instances where I awaken from a deep sleep. There were also several instances where my breathing is obstructed, or I stop breathing. None of this I was even aware of, to include the fact that I was unaware I snore.
So, now I'm supposed to go back to have yet another sleep study so I can be measured for a CPAP machine. I have to say, I have been in denial of all of this and have been avoiding making an appointment to have this 2nd sleep study done. I just can't believe all of this, I am so overwhelmed. I have the handouts the doctor gave me, and the top handout sits here and glares at me "Sleep Apnea and Cardiovascular Disease". I've been warned of the dangers that sleep apnea has on a person, cardiovascular disesase, stroke, etc. Plenty of reason TO get the CPAP, but I am in denial. I read all of these forum posts about the difficulties people are having with their machines, having sore throats from it, not liking the mask, etc. I had to wear a boot at night for a foot condition and I couldn't last even a couple of hours....what is going to happen when I get this CPAP and it turns out to be a horrible experience? I'm a side sleeper, what am I going to do if I can't sleep on my side?! Aaaaaagh!!! This is stressing me out.
Your post covered a lot of ground, so I will try to address some of your concerns. First, I was diagnosed with SA in March of 2015, and started CPAP treatment on April 2, 2015. So, I understand your concerns, but I believe that you are over thinking this situation.
Your Sleep Study report likely has a lot of information in it, but the most important number to remember is your "AHI" number. AHI is simply the ratio between the number of apnea events (number not length of any event) and the number of hours of sleep (measured, and computed, in "hours"). For example, my Sleep Study AHI was "47". Any number above 30 is considered as severe SA and needs treatment likely for life. 47 is well above 30, but I have read others who have had numbers nearly 100 or even more.
Now some specific responses to some of your comments.
1. Difficulty in adapting to CPAP. It is a problem for some, but many adapt without any issues. As I mentioned above, I started my therapy on April 2, 2015. Since that night I have not missed one night without my CPAP on and running. No problem adapting at all. However, I use what is called a "pillow mask", which is the least intrusive of any type of mask. If you are not a "mouth breather" this is the type of mask I would recommend for anyone. Most of the time it is difficult to even tell it is on and the CPAP machine running.
I think that most of the people who have serious problems adapting require a full face mask, in other words, they are "mouth breathers" so their mouth and nose must be covered by their mask.
2. Sore throats: This is caused by the lack of moisture in the air and is easily fixed by using the humidifier that is standard, or at least optional, for nearly all CPAP devices. Without a humidifier is no different than breathing the very dry air that is very common in nearly all homes in the winter. I use my humidifier in the winter, then turn it off during the summer months.
3. Side sleeping: This is actually the recommended sleeping position for anyone with SA, so this is really not an issue. There are even special pillows available that make it easier to side sleep and not have a pillow interfere with the mask. Up until the last few days, I always slept on my back, which is a big no no in the SA world, but I had no choice do to unrelated back problems. Even while on my back, my CPAP kept my nightly AHI well below 1. I just switched to side sleeping since for some unknown reason this no longer causes pain, and I have not had any problems (still using the same pillow). In any case, side sleeping is not an issue while using CPAP therapy.
I have some other thoughts, but I will stop for a moment and post what I have written so far to make sure that I do not lose it due to some computer event.
What happens after this second study is where it becomes confusing and complicated. Remember the old saying "it is all about the money" yours in this case, or yours and your insurance company's money. From my experience, and from reading many other people's experiences, this process now becomes one big money grab, especially if you use insurance to pay for all or parts of the equipment. BASED ON MY EXPERIENCE, AND OTHERS, IF AT ALL FINANCIALLY POSSIBLE, KEEP THE INSURANCE COMPANY OUT OF THIS PROCESS.
I know what I just said sounds like I am crazy, but unfortunately, IMO, your CPAP life will be much easier, overall less expensive, and keeps you in control, which you will not be if insurance is involved.
Again, I will use me as an example of what typically happens and why I now know that I was scammed. After my Sleep Study, the results were sent to a doctor that to this day I have never met or ever will. This unknown doctor wrote a CPAP prescription and instead of sending it to me as a doctor normally does when they write a prescription, he sent it directly to what was to quickly become my "DME" provider. (DME - - Durable Medical Equipment)
DMEs provide medical hardware of many types including all SA related equipment. It is their job to work with your insurance company to get you the equipment just prescribed by your doctor. If it is not apparent yet, they are mainly interested in making profit off of you and/or your insurance company by overcharging, or sending you unneeded future equipment.
Again, my experience. I knew nothing about DMEs, or CPAP equipment, or even SA for that matter, but, from the time of my Sleep Study to the time I had my CPAP, it took only a week. Out of the blue, the DME called me and told me that I needed to order my equipment that day, Oddly, they only offered just one brand/model and said that they offered just one other and it did not apply in my case. (Later, I found out that that are dozens of machines on the market with many different capabilities.)
First they asked about my insurance, surprise. I told them what I had and that I had not met any of my $2,000 deductible. Feeling sorry for me, they told me that they would bill my insurance company the full amount (about $1,400), but only bill me $675 for a cash deal. Oh boy, they just saved me a ton of money - - NOT. They actually did bill my insurance company the bogus charge, but it really never made any difference since I had no other deductible related charges in 2015 so the insurance company only got paper scammed.
As for me, I later found out that an online supplier of about all CPAP related equipment in the world, and located about 40 minutes from my house (with a real store that I later visited), would have sold me all the same equipment for about $250. To make matters even worse, the CPAP machine that the DME stuck me with was the most basic model available and is known in the CPAP user world as a "brick." In other words, I got stuck with a piece of junk.
After several months of reading other CPAP specific Boards, I went to the previously mentioned online/local supplier and bought what is generally considered the best APAP for less than $900.
Remember that to buy CPAP machines and other related hardware, you will need a prescription. Your doctor may refuse, but you have every right to it and make sure your doctor knows it. I would bet money that in my case, my original PCP and referring doctor, the Sleep Study Center, the unseen prescribing doctor, and the DME were all in it together for the money.
There are other reasons to keep DMEs, and insurance companies out of your equipment business, but I will hold off on that until my blood pressure goes back down.
The best of luck, and do not stress about using a CPAP machine! You will feel much better and maybe even put an end to your headaches!
If I didn't make it very apparent already, and I'll confirm what you've already said, yes, I am overwhelmed and am probably overthinking this whole thing. Call it vanity or whatever you want, but one main reason I am protesting this CPAP is the fact that I don't want to walk around with the evidence that I wear a mask at night. I can instantly tell if someone wears a CPAP mask because there are little indentations on their face and I don't want that. Again, I know I'm being very vain.
I am a day sleeper and my neurologist (where I do the sleep study) is over an hour away so to have to do another study is nothing short of inconvenient. Yes, another excuse, but another one that is holding me back from proceeding forward with getting this show on the road.
The good news out of all of this is, I HAVE met me deductible for the remainder of the year, so any in-network charges are paid at 100%, and I've already checked with my insurance company about the CPAP equipment and it would all be paid for. But, I am hoping, like you mentioned, I don't have to settle for a piece of crap, or "brick" CPAP when insurance would just as easily pay for the Cadillac of CPAP's, too. I mean, if the DME company is gonna try to sell it to me, and if insurance is gonna pay for it, why not get it?? Well, sure, I do have to think about when January 1 rolls around and my plan starts over, all of the equipment maintenance will be my responsibility again. I have a high deductible $2,750 to be exact before it's paid at 100% again. Only reason why I've met it already is due to the CT scan, MRI, sleep study, etc. Highly unlikely I'll be having any major medical procedures that will make me meet the deductible as quick as I did this year, God willing.
So, having said that I've met my deductible, what would you recommend I do when considering my CPAP equipment? I *DO* want to get one that has a humidifier because currently I am nearly dependent on nasal spray (I have a deviated septum to boot) that I would like to get off of and I am afraid of the dry sinuses becoming an issue. The doc also recommended a CPAP machine that had a removable smart chip in it so that he could monitor my activity.
I could start my research now, but I don't even know what I do and don't need.
I am 100% NOT convinced that my sleep apnea has ANYTHING to do with my migraines. Sure, I am no physician, but I think this diagnosis/discovery that I have sleep apnea is simply coincidental, but absolutely and completely unrelated to my headaches. I have had migraines since I was probably 8 or 9 years old and pretty darn certain I haven't had a sleep disorder for that long. Honestly, I don't even think I have a sleep disorder, but apparently a doctor says I do. Hmph!!
Let me try to comment on your questions or issues.
1. Mask indentations: That is something that I have never noticed or even thought about. With a pillow mask there are no marks the next morning, but probably with others. Not sure how easy it is to reduce them; maybe with standard custom designed pads??
2. Day sleeper: I assume that you work nights and have to sleep during the day? Having your doctor a hours drive away is really a pain. I live in Houston so my sleep lab was 10 minutes from the house.
3. Sounds like from an insurance perspective, now is the time to get the study finished and maybe the equipment paid for. As for insurance paying for the equipment watch out that your 20% copay is not as much as just buying the same machine outright from a good company such as cpap.com. In my case that I described earlier, 20% of $1,400 is $280, which is more than I would have paid buying the same "brick" and mask from cpap.com with no strings attached. Just be careful, they will probably push you to buy from their selected DME as soon as they can.
4. Nearly all machines come with a humidifier standard. You really have to look hard to find one with out, but some models have them as a low cost option.
5. Most CPAP machines have a removable SD data card; even my brink did. The data stored on the SD card will be needed by your doctor anyway to be able to monitor your progress, or maybe you being "complaint" with the insurance rules (at least 4 hours per night, 70% of the time).
More importantly you will want to be able to download your data to your computer to be able to monitor each night's results. This can be the tricky part. 1) You will need an SD card reader in your computer, and 2) the software to read the data. You may have heard of "Sleepyhead" software. It is great, free, but only compatible with a few machines. Try to get a machine that is compatible with this software. Other than Sleepyhead, if you know where to look, you can get the same software that the doctor uses from the machine's manufacturer. I have both Sleepyhead and ResScan (for my ResMed 10 APAP) and Sleepyhead is much better. We can discuss all of this later if you want.
5. Migraines: I have not had that problem - - yet, so do not know if using a CPAP will help. However, the more that I have studied SA since last year, the more I believe that it can be the root cause of many, many, serious issues. It has even been linked to Melanoma aggressiveness.
http://www.sleepreviewmag.com/2016/05/untreated-sleep-apnea-may-linked-melanoma-aggressiveness/?ref=fr-title
That is all that I can think of at the moment, but just in case you have not seen my other posts on SA, below are links to my favorite SA only Boards. I recommend that you post at each of these sites; you will get a boat load of help!
http://www.cpaptalk.com/CPAP-Sleep-Apnea-Forum.html
http://www.apneaboard.com/forums/index.php
I know it's inconvenient, but you need to be determined to get that second sleep study done. When you have sleep apnea, you stop breathing for greater than 10 seconds. Try holding your breath for longer than 10 seconds repeatedly and you'll see the "fight-or-flight" response your body goes into. Now, hold your breath for 10 seconds, breathe normally for 10 seconds, and repeat for 8 hours. That's what your body goes through every night. It's no wonder there are so many ailments that are caused by sleep apnea. Stroke, heart attack, kidney failure and, oh yeah, sudden death. I was determined to use my CPAP because I didn't want my family to find me dead in bed one morning. Do it for your loved ones.