Hometown: South Euclid, Ohio
Treatment: Drug therapy
Suzanne Reagan was once referred to as “Sleeping Beauty.” It was a nickname her Spanish teacher used to tease the high school student for sleeping during class.
“Every day I’d be sleeping and [my teacher] would say, ‘Now Sleeping Beauty, wake up and pay attention,’” recalls Ms. Reagan. “I always knew there was something [wrong] with my sleep. I knew I needed more sleep than the average person.”
Though some of her girlfriends also would fall asleep during class, Ms. Reagan fell asleep in all her classes and wound up failing the Spanish course. It raised a red flag, but she never equated her unique sleeping patterns with a disorder. Like many teenagers, Ms. Reagan was constantly tired, had low energy and napped most days.
It began around age 14, when she noticed symptoms such as sleep paralysis and cataplexy, a condition in which a patient experiences a sudden loss of muscle tone. To Ms. Reagan, it ran in the family. Her sister, Sarah, slept through many of her classes, too, and even recorded her college lectures so she wouldn’t miss important facts that could later show up on tests. What’s more, Ms. Reagan recalls that during her childhood, her mother napped most days and was always the first to fall asleep during a movie.
But after her older sister was diagnosed with narcolepsy – a neurological disorder that affects the control of sleep and wakefulness – Ms. Reagan knew that she, too, had to be tested.
“It was hard to do everyday things,” she explains. “It made it really hard to finish school. It was hard to keep a job. It’s almost like you’re pushing through life.”
Two years ago, Ms. Reagan underwent an overnight sleep study, or polysomnogram, at Cleveland Clinic Sleep Disorders Center at Fairhill, where physicians recorded her eye movements and brain and muscle activity to analyze her sleep patterns. The next day, Ms. Reagan took a Multiple Sleep Latency Test to measure daytime sleepiness through a series of naps. Sure enough, in November 2009, she, too, was diagnosed a narcoleptic. Her mother was later tested at Cleveland Clinic and diagnosed with narcolepsy as well.
Ms. Reagan’s history is fairly typical of narcolepsy sufferers, according to Nancy Foldvary-Schaefer, DO, Director of the Sleep Disorders Center.
“It often takes years for a correct diagnosis to be established,” Dr. Foldvary-Schaefer says. “Yet, appropriate treatment can lead to rapid and remarkable improvements in quality of life.”
Ms. Reagan is extremely thankful for Dr. Foldvary’s support throughout her struggle to find a medication that best suited her. She now takes Xyrem® at night to reduce daytime sleepiness and cataplexy symptoms, and Dexedrine® during the day to keep alert. Almost immediately after treatment, Ms. Reagan’s symptoms were relieved.
“I’m actually able to stay awake and do things like a normal person,” she says. “Of course, there are always side effects with medication, but I would say the side effects are minuscule compared with what they’re doing for you.”
The nickname “Sleeping Beauty” no longer applies to Ms. Reagan – or to her family, for that matter. The lives of all three women have improved dramatically since diagnosis and treatment, which has brought them closer together.
These days, Ms. Reagan spends the majority of her time focusing on her dream, not on her symptoms. She writes music and plays guitar for her Michigan-based all-female metal band, Gates of Babylon. Prior to treatment, she couldn’t just pick up and make the three-hour trek to Detroit to practice with the band and play a show.
“But now, I’m able to do all those things,” she says. “It’s almost as if I don’t even remember how hard it was before.”
Hometown: Cleveland, Ohio
Diagnosis: Sleep apnea and insomnia
Treatment: CPAP and Sleep Skills Group therapy
About three years ago, Beti Maxey was under significant stress. As a high school teacher in the Cleveland schools, she was involved in many school projects, including the school newspaper, which kept her away from home and awake past midnight most nights. What’s more, her husband’s career as a pipefitter took him across the country for weeks at a time.
Mrs. Maxey was on the go so much during the day that she couldn’t understand why she wasn’t sleeping at night. For those sleepless nights, she filled her bedroom with things to keep her busy; her crocheting tools, laptop and remote control were by her bedside at all times.
“It would take me forever to go to sleep, and then I would wake up and couldn’t go back to sleep,” says Mrs. Maxey, who fell into a deep depression and wound up taking a leave of absence from teaching. “I had problems going to sleep, and then I had problems staying awake.”
It wasn’t until her daughter visited from Florida to help with house chores and other daily tasks that Mrs. Maxey sought help from Cleveland Clinic. After an overnight sleep study, or polysomnogram, during which physicians recorded her eye movements and brain and muscle activity to analyze sleep patterns, Mrs. Maxey was diagnosed with sleep apnea and insomnia. People with untreated sleep apnea are unaware that they stop breathing repeatedly during sleep due to airway blockage. These episodes can disrupt sound sleep and lead to many other complications.
Under the care of Michelle Drerup, PsyD, at Cleveland Clinic’s Sleep Disorders Center, Mrs. Maxey was treated for her sleep apnea with Continuous Positive Airway Pressure (CPAP), a specially designed mask that pushes air into a patient’s airways to keep them open. In addition, Dr. Drerup recommended the center’s Sleep Skills Group to give Mrs. Maxey effective coping tools for her insomnia.
“The Sleep Skills Group is a four-week program that uses ideas and strategies from cognitive behavioral therapy for insomnia,” Dr. Drerup explains. “This approach is an effective alternative to sleeping pills. Mrs. Maxey was a great candidate for the group because she was very motivated to work on her sleep difficulties and was excited to learn new skills and make changes in her behavior to improve her sleep.”
With the help of Dr. Drerup and CPAP, Mrs. Maxey is now sleeping through the night and waking up alert, ready to start her day. The Sleep Skills Group helped her identify her insomnia triggers and taught her the necessary skills to change.
“It seems as though [Dr. Drerup] could understand everyone’s problem,” says Mrs. Maxey, adding that physicians helped patients figure out a system best suited for each individual. “They made it so easy. They not only added a name to it, but they gave us reasons why and things we could actually do to change our situation.”
Organized with comfy chair recliners set in a calming environment, each group session focused on identifying insomnia triggers, including lifestyle habits and negative thoughts. Participants also engaged in relaxation training. Guest speakers led open discussions and provided informational handouts.
“Everyone had a chance to tell their story, and I think each person’s story helped everyone else,” says Mrs. Maxey “It made me feel better just to know that I felt that way, too, but I just didn’t know how to express it.”
Mrs. Maxey continues to weave the relaxation tapes and practices she learned from the support group into her daily routine. She goes to bed at 11 p.m. and wakes up at 7:30 a.m., and she takes no sleep medications. Most importantly, she practices good sleep hygiene by using her bedroom only for sleep. Her days are much easier to get through. In fact, she’s decided to launch her own business devoted to all-natural skin care.
“My insomnia is getting less and less,” she says. “I don’t take naps during the day because my sleep now is a deeper sleep, and I have more energy.”
Diagnosis: Obstructive sleep apnea
If it weren’t for his wife, William Spells may never have known he had a sleep disorder. She would often give reports of his strange nighttime behaviors, including ferocious snoring and jerking his body around. Mr. Spells would frequently wake up in strange positions on the edge of the bed and found himself extremely tired during the day.
After five to six years of exhaustion and restless nights for both himself and his wife, Mr. Spells went to see his primary care internal medicine physician, Kathryn Teng, M.D. about his sleep troubles. She then referred him to a specialist at Cleveland Clinic’s Sleep Disorder Center.
Mr. Spells underwent a diagnostic overnight polysomnogram (PSG), which measures a variety of body functions during sleep including breathing patterns, heart rhythms, and limb movements. The results were shocking.
“They told me that every hour, I stopped breathing 68 times,” Mr. Spells reported.
The sleep disorder specialist diagnosed Mr. Spells with obstructive sleep apnea, which is when the upper airway is blocked at times during sleep, causing the patient to be jolted awake repeatedly. Mr. Spells’ recommended course of treatment was Continuous Positive Airway Pressure (CPAP), a specially designed mask that pushes air into a patient’s airways to keep them open. In order to teach Mr. Spells how to use the seemingly complicated machine, a representative came to his house to deliver CPAP and provide education. Mr. Spells realized it wasn’t as scary as he originally thought.
“The first night, I had a really difficult time sleeping,” recalls Mr. Spells. “But the next day, I felt better already. I could really see and feel the difference.”
There has been a drastic change in Mr. Spells since he began CPAP. He says he has an overwhelmingly larger amount of energy during the course of the day.
But Mr. Spells isn’t the only one who has experienced the benefits of CPAP. Since he started using the machine two years ago, his wife has seen major improvements too. Mrs. Spells also sleeps easier without the tossing and turning associated with her husband’s OSA.
Diagnosis: Obstructive sleep apnea and restless leg syndrome
Treatment: CPAP and drug therapy
A sunny day on the golf course can be exhausting, but Andrew Hudak experienced extreme fatigue on the afternoons after he would hit the links five to six years ago.
“I would go golfing and fall asleep on the way home,” Mr. Hudak recalls. “I realized something wasn’t right.”
In this, Mr. Hudak was correct. His wife also noticed he wasn’t himself, with fatigue, depression and a habit of kicking her in the night. As he is “the kind of person who always goes right to the experts,” Mr. Hudak made an appointment with a sleep specialist at Cleveland Clinic Sleep Disorders Center after just a few days of dealing with tremendous sleepiness. He underwent a diagnostic overnight polysomnogram (PSG), which measures a variety of body functions during sleep including breathing patterns, heart rhythms, and limb movements.
While his first sleep study reported some apnea, it was not considered severe. Mr. Hudak was diagnosed with restless leg syndrome and given a prescription for Sinemet® in order to reduce nighttime leg tremors. While Mr. Hudak and his wife noticed his legs stopped kicking, he still was feeling increasingly sleepy during the day.
After taking part in a second PSG, Mr. Hudak found the answers he had been seeking. This time, the PSG reported obstructive sleep apnea (OSA). Each night, Mr. Hudak was repeatedly jolted awake because of abnormal pauses in his breathing, all caused by an upper airway obstruction. For his condition, Sleep Disorders Center Director Nancy Foldvary-Schaefer, DO, recommended Continuous Positive Airway Pressure (CPAP), a specially designed mask that pushes air into a patient’s airways to keep them open. Initially, Mr. Hudak was resistant to the machine.
“I fought it at first,” he says. “But then I saw the seriousness of Dr. Foldvary-Schaefer’s expression and decided to give it a whirl.”
Soon after the visit with Dr. Foldvary-Schaefer, the CPAP machine was delivered to Mr. Hudak’s home by a “very knowledgeable man” who taught him the proper way to use it and took plenty of time to answer questions. Mr. Hudak experienced dramatic results. For him, the benefits of using CPAP have been seemingly endless.
“I didn’t realize how bad it was until I started using CPAP,” he explains. “I started to feel better the very next day. I was rested, had a positive attitude, and a lot more energy.”
Mr. Hudak still uses CPAP every night, citing how great he feels as motivation to not discontinue use. According to him, the discomfort from the mask is not as bad as it appears, and well worth it.
“It can be a pain in the butt; it’s sort of like going on a diet,” Mr. Hudak explains of the CPAP machine. “When your pants get loose, you can see the sacrifice is worth it.”
Patients with OSA like Mr. Hudak often report that once you adjust to using CPAP, the benefits roll in quickly. He felt more rested and physically active and his wife says he is more mentally alert. Mr. Hudak’s life has been changed for the better, and now he’s awake and alert to enjoy it.
Parents Play a Key Role in Infant's Sleep Apnea Treatment
Although Pam and Michael Nagle were naturally overjoyed at the birth of their third child, Benjamin, frustration soon followed.
Benjamin was born full-term, but he ended up in the NICU with troubled breathing. His oxygen and thyroid levels were low. At the time, Benjamin was overweight and his tongue was larger than normal, two factors that may have been contributing to the breathing problem. But the exact cause eluded many local doctors. Since his breathing was worse during sleep, his parents took him to Cleveland Clinic for help. "We met with an ENT specialist, and she referred us to Dr. Jyoti Krishna, head of pediatric sleep disorders," Pam recalls. "He ordered a sleep study."
After being tested in Cleveland Clinic's pediatric-friendly sleep lab, Benjamin was diagnosed with obstructive sleep apnea, a condition that manifests as repetitive episodes of complete or partial upper airway blockage during sleep. This causes the diaphragm and chest muscles to work harder as the force required to open the airway increases. These episodes can occur multiple times in a single night and interfere with sound sleep, reduce the flow of oxygen to vital organs, and cause stress on the heart.
Although in many children tonsils and adenoids are to blame for obstructive sleep apnea, this wasn’t the case for young Benjamin. This meant surgery wasn’t an option – and weight loss, though ideal in the longer term, would have been too slow a process at the time. Needing immediate help, Dr. Krishna suggested using continuous positive airway pressure (CPAP) to treat the condition. This treatment uses a specially designed mask to deliver air under gentle pressure into the airways. It prevents the airway from collapsing on itself during sleep by functioning like an “air-splint” as it were.
"They found the smallest mask they had that worked for him," Pam says. "It fits snugly over his nose and the tubing goes over his head." The first night Pam put the CPAP mask on her 5-month-old son, it lasted only 20 minutes. The next time she tried, he wore it for two hours. Thanks to her patient persistence, Benjamin was eventually able to tolerate the CPAP all night long. It was a huge relief for both parents, especially after several months of trying to determine why their infant needed around-the-clock oxygen to survive. Benjamin is now 14 months old, and he sleeps through the night with the CPAP. His sleep apnea numbers are going down, which indicates that he might be outgrowing the condition.
Dr. Krishna believes that Benjamin's parents have played a critical role in their son's progress. "They are wonderful parents, and they were very compliant," he says. "They understood that while oxygen was okay as a second line measure, CPAP was better." At the same time, medication is helping to get Benjamin's thyroid under control, and he is losing weight. A repeat sleep apnea study at 11 months indicated that he still needs the CPAP, but his condition is improving.
The Nagle’s are grateful for the care Benjamin has received at Cleveland Clinic Sleep Disorder Center where the technicians are trained to care for children of all ages, from premature babies to teenagers. "I am so relieved that we went to Cleveland Clinic because all the doctors have been awesome," Nagle says. "Dr. Krishna is very gentle, and he listened to what we had to say. I would recommend him to anybody. He has done wonders."