One of the health issues that some dwarfs must deal with is sleep apnea (when you stop breathing while sleeping). This is a serious condition that must not be taken lightly. Unfortunately, both of us were diagnosed with severe obstructive sleep apnea in our 30’s. However, we made sure to take care of our health and we both are being treated. As our pulmonologist says, we have his-and-hers CPAP Masks. Here are some important points about sleep apnea:
- Sleep Apnea is very serious and can cause a multitude of health problems.
- While Sleep Apnea is often associated with obesity, you can still have apnea if you are not overweight (or even if you are underweight!)
- Snoring does not always mean sleep apnea, and sleep apnea does not always manifest as snoring.
- You can have Sleep Apnea and not know it! Not everyone with sleep apnea experiences extreme drowsiness.
- Some types of dwarfism are associated with a higher risk of sleep apnea.
- Men and women exhibit symptoms of sleep apnea differently! Women are less likely to have typical symptoms such as snoring, daytime sleepiness, and pauses in breathing. Restlessness, mood changes, and insomnia are more likely.
- Apnea can be either obstructive (a blockage of your airway caused by your tongue, soft palette, etc.), central (an issue with your brain signals related to breathing caused by spinal compression, etc.), or complex (a mix of both obstructive and central).
Dwarf Mom’s Apnea Story
Like a lot of LPs with achondroplasia, I had obstructive apnea at a young age. The worst part of the obstructive apnea was not the snoring as much as it was having the narcoleptic (falling asleep anywhere) type episodes my freshman year of high school. So, not only was I the dwarf, but the dwarf that kept falling asleep in every class, in a deep sleep, and LOUDLY snoring. Bummer! Thankfully, I got it taken care of with the adenoidectomy and tonsillectomy, so I finally stopped being so exhausted after school.
Fast forward over 20 years later, my husband notices that I paused breathing and gasped in my sleep. OH NO! Thoughts racing in my mind: There’s no way I have apnea again! No WAY do I have apnea again. Oh my god, I have apnea again. Basically, I was in denial about having apnea and getting fitted for a CPAP. Sure enough, the sleep study showed I had obstructive and central apnea. Central apnea caused by the lack of oxygen from obstructive apnea or desaturated oxygen levels of 60 percent. Yikes!
I was in denial, and hated the first two weeks of using the mask. Thank goodness, my husband walked me through the experience of what to expect and how to adjust everything to my comfort with choosing masks, nasal pillows, etc. Now, I can’t sleep without it. And yes, though not a sexy thing, we now have his and hers CPAP machines that help us breathe better at night.
CPAP vs BiPAP vs APAP vs ASV
First, some quick definitions. CPAP (Continuous Positive Airway Pressure) is considered the current gold standard in treatment for sleep apnea. Basically, it applies positive pressure (blows air) to splint open your airway. APAP is an adjustable version of CPAP; where CPAP always blows at the same pressure rate, APAP supports a minimum/maximum pressure and adjusts automatically if the machine detects the patient is experiencing an apnea or hypopnea. Bi-PAP allows for a different pressure for inhalation and exhalation, which can be more comfortable for people may experience difficulty exhaling against the pressure. ASV (Adaptive Servo-Ventilation) is the top-end model of CPAP machines and can treat both central and complex apnea.
One of us became somewhat of a CPAP champion, and here are some of the tips we’ve learned.
- Do not give up! It took one of us at least two weeks to be able to sleep through most of the night with the mask on. Now, it’s habitual and difficult to sleep without it.
- The DME (Durable Medical Equipment Provider) is not your friend! They will always try to give you the cheapest equipment possible, even though you may be entitled to one with more features. It’s not unheard of for the DME to lie to you (or severely stretch the truth, or omit relevant information)!
Try to get a data capable machine. This means the machine will have a smartcard or SD card and record your sleep history including all apneas, hypopneas, how often you snore, and your leak rate.
If you are prescribed CPAP, your DME will most likely give you the PR System One REMStar 60 Series SE CPAP Machine. If you ask about a higher-end machine, they will tell you scary stories about how a nice machine is very expensive, maybe even a thousand dollars or more. Well, if you have a prescription from your doctor, you can buy this machine yourself for less than $300 online. Not so expensive, eh? However, this machine is bare bones and only records compliance (how often you use it) but not any detailed sleep data.
For a data capable machine, the PR System One REMstar Pro CPAP Machine with AutoIQ PR System One DS450S REMstar Pro CPAP Machine is about $450 online. This machine is the same form factor as the entry-level machine, but will record all your sleep activity on the card and also has C-Flex (exhalation support in case you have difficulty exhaling against the pressure).
Most likely, your DME will be getting a fixed reimbursement amount from your insurance regardless of which machine you pick. There is only one Medicare reimbursement code for CPAP, whether it’s a cheap entry-level machine or one with all the bells and whistles! So you can see why the DME says you can only get the basic machine. By giving their patients the cheap machine, they maximize their profit! If your doctor prescribes a specific model number, your DME will be required to provide it as long as your insurance approves.
You may wish to consider using a humidifer, which can help if you have difficulty tolerating the dry air the machine is blowing. If you have insurance, most likely this add-on will be free or very cheap. But you will probably need to ask since your DME will not give it to you out of the goodness of their heart. We had a CPAP prescription from our doctor clearly ordering a humidifier and the DME accidentally over-looked this request.
There are many different types of CPAP masks. We both use theResMed Swift masks which have nasal pillows (he uses the Swift FX and she uses the Swift FX for Her. We like these because they are extremely lightweight, quiet, and leave most of the face uncovered. The nasal pillow mask also seems to fit well for dwarfs with achondroplasia as it doesn’t need to seal against any facial area with mid-face hypoplasia. The one downside with nasal pillow masks (and nasal masks) is leakage through the mouth. If you open your mouth while sleeping, much of your treatment will escape! You can try to train yourself to keep your mouth closed, but if this doesn’t work you can try a chin strap which will help but may be uncomfortable. Another option is to use a full-face mask which covers both your mouth and nose so the air won’t escape. Since most full-face masks are large and bulky, they can feel uncomfortable (and possibly claustrophobic), especially for a new CPAP user.
We highly recommend you use the newer Performance Tubing, especially if you use nasal pillows. You can buy a 2-pack online for $20. The original gray CPAP tubing is very heavy and it will pull on nasal pillows throughout the night, causing you to lose your seal while the new performance tubing which is very light and flexible. The cost difference between the gray and white tubing is very minimal, especially considering that the tubing does not have to be replaced very often. Unfortunately, your DME may only provide the gray tubing even if you request the white one.CPAP Pillow to complement your therapy. There are multiple manufacturers to choose from. The idea is that they have a notch/opening to allow for the CPAP mask to lay flat without pushing into the pillow. This may be very useful for CPAP users with a full-face mask.
It may look funny, but the North American Healthcare CPAP Hose Holder is very highly rated online. It’s a stand that sits next to your bed and elevates the CPAP hose so it won’t drag against your bed, nightstand, etc.
If you have a good relationship with your doctor or if you have a high set pressure, you may wish to request an APAP machine. In addition to tracking all your sleep data, you can set a range of pressures (high/low). It’s possible that at certain times of the night, or when you are lying in different positions, you will require a higher or lower pressure. The APAP machine decides what pressure is best for you at all times and can provide the most comfort by lowering your pressure. Some people are aroused/awaken by the fluctuating pressure changes, but you can use an APAP machine in CPAP mode if desired.
CPAP Supplies and Insurance
Be sure to receive the supplies you are entitled. Your insurance should be following Medicare guidelines, which allows for replacement of tubing, filters, masks, pillows, etc., on a regular schedule. As you might expect, you will need to ask for these supplies as they will lower your DME’s profits. Your DME will most likely give you an initial set of tubing and filters and never offer a replacement! Our DME requires us to call in every 30 days and request new supplies. Obviously they earn more profit by not automatically shipping us what we are entitled to.
Monitor Your Progress
If you do get a data capable machine, consider purchasing the software so you can view the data on your PC. The data capable machines will give you a brief summary of your sleep such as the AHI (the Apnea/Hypopnea Index, or number of times you stopped breathing per hour), but the software will give you more detailed information and you can graph your progress.
Alternative Treatments for Sleep Apnea
While CPAP is the current gold standard for sleep apnea, some people find their treatment too difficult to tolerate and look for alternate solutions. Obviously the worst decision is to stop treatment without involving your doctor and just hope for the best. Your doctor can help you explore alternate some alternate solutions.
Mandibular Advancement Device
One of us had a Mandibular Advancement Device made at first when we were having a hard time tolerating the CPAP machine. This is a custom-fit oral appliance that moves your lower jaw forward when it’s worn on your teeth. A special dentist creates a mold of your upper and lower teeth but has the lower jaw set forward. This piece is very expensive to make but unfortunately it was just too painful to tolerate. The mouthpiece fits onto the teeth very tightly to prevent it from slipping off during the night. Maybe other doctors create theirs differently, but this one was very painful and much less tolerable than CPAP. You can actually buy similar Over the Counter versions of this device, but we’d recommend being very wary of any claims that a store bought mouth piece will cure your sleep apnea.
One of the more scary treatments is UPPP, which involves removing tissue in the throat. This extensive operation involves removing one or more of the following: soft palate, uvula, adenoids, pharynx, and the tonsils. The success rate of UPPP as a treatment for sleep apnea is under debate. UPPP has been described as having a 40% success rate when used by itself, but the methodology for this calculation has been criticized.
UPPP is sometimes offered in conjunction with a treatment called the Stanford Protocol, which is UPPP followed by Maxillomandibular Advancement (moving the jaw forward with an operation). The idea is that after the jaw is moved forward, the patient’s tongue will no longer block their airway while sleeping. Results of the Stanford Protocol show that about 60 percent of patients were entirely cured of their sleep apnea and up to 90 percent experienced improvement.
Risks of Apnea Surgery
No surgery is without risks, and UPPP is definitely no different. Some risks include:
- Infection and swelling at the site of the operation. Post-operative scar tissue can cause a narrowing of the airway, rendering it tighter than before surgery.
- A change in the voice of the patient. Supposedly this does not affect English language speakers and it only relates to langues such as French that use a uvular ‘r’ phoneme.
- Possible throat and nose airway narrowing which can cause, ironically, sleep apnea and snoring.
- Some patients who received UPPP have complained of acid reflux.
Sleep Apnea Resources
If you like to participate in message boards, there is an active community of CPAP users at cpaptalk.com. If you have any questions or concerns related to your treatment, feel free to send us a message and we’ll try to help you out.