In the Spotlight - TASquacky

When Quacky appeared in our chat room in 2003, it was obvious that she was searching for answers to her snoring and sleepiness.  Eventually diagnosed with Upper Airway Resistance Syndrome (UARS) she helped open the door to discussion of this sleep disorder which is quite common but not often understood. 

The term, "Upper Airway Resistance Syndrome," (UARS) was first coined by Dr. Guilleminault at Stanford in 1993, to signify chronic daytime sleepiness in the absence of actual apneas or hypopneas, but often associated with snoring in turn associated with brief, frequent arousals with an only slightly abnormal breathing pattern. There is no actual cessation of breathing, nor any decrease in oxygen saturation, but with measurement of air flow through the nose and mouth there are signs of decreased flow on breathing in. The arousals and resulting sleep fragmentation are related to increased effort to breathe, detectable with measurement of pressure changes in the esophagus. Just before the arousal, the esophageal pressure starts to decrease, indicating increased effort to maintain the flow of air, which is only slightly reduced.

Quacky is the wife of a preacher, the mother of two young children and a Special Education teacher.  She brings joy to our chats, understands the frustrations of sleepy people and with encouragement, promotes the importance of patient education.  She is a breath of fresh air and eager to help fellow patients.  We are so fortunate to have her as part of the TAS chat host team.  Please join in her Friday evening chat 8-10pm eastern.

TASquacky shares her journey of awareness, diagnosis and treatment:

I am diagnosed with Primary Snoring and UARS. It took me 2 years to and 2 sleep studies to get a diagnosis. The first sleep study included an MSLT, which showed some snoring, few apneas and no narcolepsy. I moved to another state, and found a new doctor who better understood sleep disorders because he had sleep apnea. His referral for another sleep study showed I snored 4,596 times in 6.5 hours. This equates to 695.5 snoring episodes per hour. For fun I figured out the number per minute was 11.5. You only breathe 14-18 times per minute when resting. I also had several unexplained awakenings. My sleep doctor explained UARS and informed me that it was treated the same way as sleep apnea, with CPAP.  He was very open minded and allowed me to choose the machine and mask I wanted. Respironics had just introduced their C-Flex feature on their devices and this is what I chose. I loved it. Over the next two years I lost a tremendous amount of weight and was experiencing what I call "papgas".  My doctor explained that when cpap pressure is too high, it can force the air through the esophagus and in to the belly causing stomach bloating and pain.  With the weight changes in my life, my sleep doctor thought I would benefit by using an auto titrating machine and prescribed a Puritan Bennett Goodnight 420E which I still use successfully today.

As for challenges with treatment, I don't really have any. I am one of the lucky ones who adapted relatively quickly and have been compliant from day one. Occasionally, I get tired, so I adapt by going to bed earlier or trying to sleep a bit later. I follow a regular sleep routine.

Back to the beginning, before my first sleep study I began searching for information on snoring and sleepiness. When my mother-in-law and father-in-law, both of whom have difficulty hearing, could hear me snoring over their loud TV, I knew it was time to act.   I started doing basic web searches online. I found a couple of sites with information about apnea, but none as good and thorough as talkaboutsleep.com. I discovered their chats and remember spending several nights chatting with TAStracy and Tasokie about the symptoms of apnea and how to go about setting up a sleep study and a variety of other issues. After my initial study, I returned to the chats and discussed the results with the hosts and others patient participants. The learning process kept me coming back for more.

Although I was and still am a participant in the talk about sleep online message boards, the support I received in the chat room was beneficial because answers were immediate.

I wanted to become part of the TAS chat host team because of all the help I received as I was searching for my diagnosis. As a patient I wanted to be able to share my knowledge with others who are searching and struggling with their new diagnosis of apnea or UARS. It is important to have a support system for people. People are more successful with their prescribed therapy when they have lots of support options that they are able to take advantage of.