Story by Nicole Cordier
Photo by Kyle McKee
Blinding red numbers on her digital clock tick to 4:00 a.m., and Anna Alvarez hasn’t slept for nearly 72 hours. Her silent room is pressing down around her as blinding blue light from the street outside streams into her window. Anna turns her thin, willowy, frame away from the light and counts the hours since she last had a chance to quell her exhaustion. The past few days blur together, and sleepless time stretches on for what seems like eternity. She’s been lying in this darkened room, in an anxiety-ridden limbo, for five hours and sleep still won’t come. Finally, around 5:00 a.m., she reaches her breaking point—Anna reaches for her phone to call her parents in Portland, Oregon. She tells them she needs help, needs to participate in a sleep study, needs to go to therapy—she needs to do something other than lie in bed fighting this torturous battle for sleep.
Anna suffers from insomnia and Attention Deficit Hyper Activity Disorder (ADHD). Looking back on this memory of the worst night of her life, Anna says, “You get to a point where you are just overwhelmed by the fact that you still haven’t slept at all.” For Anna, calling her parents for help felt like a personal failure. “I always have to rely on other things and other people to help me get to sleep, which is really something that should be so easy.”
Up to 55 percent of ADHD patients experience sleep problems. Although the exact cause of this relationship is still unknown, patients with ADHD have a more difficult time falling asleep, staying asleep, and sleeping soundly. They are also more likely to suffer from daytime sleepiness or grogginess than those without ADHD.
Anna’s ADHD is apparent upon meeting her. She is excitable. Her conversations explode in spurts of excited storytelling and comfortable silence. She’s constantly rushing from one task to the next, leaving projects unfinished. It’s impossible to forget meeting Anna; if you don’t remember the way she adds h’s into words like “shtuff,” you’ll remember her wide, genuine smile. She prides herself on her warm, outgoing, and independent personality. However, Anna’s sense of independence was shaken on this night. Her will was broken and she called her parents for solace.
For many, such a breakdown would signify a turning point in their life; the old idea of rock bottom being a necessary step to facilitate major change. But as breakdowns come and go, Anna’s life remains the same. Despite her deep longing for relief, options for treating her insomnia are severely limited due to medication she takes.
Typically, insomnia like Anna’s is diagnosed and treated by a psychiatrist or sleep specialist. The first step toward recovery is usually a sleep study, which consists of an overnight stay under the supervision of doctors. During the night, the patient has metal nodes attached to various points on their body, including their head. These nodes measure breath rate, determining whether the patient is suffering from a breathing condition like sleep apnea, as well as eye movement and heart rate, in order to monitor sleep patterns.
Insomnia is often a secondary condition caused by a variety of psychological and medical disorders including anxiety, depression, sleep apnea, and Restless Leg Syndrome (RLS). “Sleep is like the little light on your dashboard that goes off and says ‘check engine’,” says Dr. Michael Dulchin, Assistant Clinical Professor of Psychiatry at New York University. A sleep study can help determine the potential causes of a patient’s insomnia.
However, Anna isn’t eligible for a sleep study because of the stimulants she takes to treat her ADHD. She is prescribed Adderall to manage her symptoms, but using this medication restricts her from participating in a sleep study because doctors she has seen often blame her insomnia solely on her use of this medication. Even after many visits, Anna’s doctors have failed to seriously address her insomnia. “All they say is that I need to start taking my Adderall earlier in the day or I need to change my dose,” she says.
Anna feels that this singularly focused medical approach to her insomnia is a mistake. Her memories of insomnia predate her prescription use. She says, “Without the Adderall, I would still sleep like this. I’d just feel the effects more during the day and be more depressed or irritable with those around me.”
Carolyn Rodgers, a physician’s assistant at Parkway Sleep Health Centers in North Carolina, also believes it is flawed to view stimulant use as the sole cause of a patient’s insomnia. Stimulants have the opposite effect on those with ADHD. Instead of adding to symptoms of hyperactivity, the medications help to calm patients down. “For some people with ADHD, we are finding that a low dose of stimulants prior to bedtime may actually settle the hyperactivity, thus promoting sleep,” says Rodgers.
In the past ten years, studies have shown that a correlation exists between insomnia and ADHD even if the patients do not take stimulants. Despite these findings, many patients, like Anna, go untreated. Rodgers says that unmedicated patients with ADHD tend to toss and turn more in the night. “We know people with ADHD tend to get less of the rapid eye movement stage of sleep, which is the most restful stage,” she says.
In addition to lower quality of sleep, many patients suffering from ADHD feel an excess of energy at night. “People who have ADHD tend to be wired, to be night owls,” says Dulchin. In his former job as Inpatient Director of Psychiatry at New York University, Dulchin dealt with many patients suffering from ADHD. In his experience, ADHD patients often describe feelings of mental restlessness or agitation as a symptom of their hyperactivity.
“Many people with ADHD are unable to shut off their minds at night,” says Rodgers. “The worst thing for someone with ADHD is lying down in a dark room with nothing going on.” She believes this excess mental energy can lead to feelings of anxiety and fear.
For Anna, falling asleep is associated with feelings of anxiety and stress. “It feels uneasy, just uncomfortable,” she says, “I feel like I’m not right, like that slight sickness that’s somehow worse than actually being sick.” When she was younger, Anna would stay up late into the night and rearrange her bedroom or solve puzzles while the rest of her family was asleep. These activities helped her avoid worrying, but would heavily contribute to her sleeplessness.
Now, Anna’s unease at night causes her to have intrusive thoughts. “I run through scenarios in my head over and over and over. So many scenarios,” she says, “Things I could have said in a situation or ways I could improve a relationship with a friend or a boyfriend.”
This constant nighttime stress has led Anna to feel like her worries haunt her. “My mind never gets a chance to reset and recharge and let go of past worries,” she says. “They are just more constant worries because I always have them in my head.” Her concerns about daily life and her relationships keep Anna up deep into the night and sometimes long enough to watch the world return to color. “I can see how it’s going to happen in my mind, but I don’t know how it is going to happen in real life, and that’s probably what worries me.”
These uncertainties have caused Anna to dread bedtime. During the day, she is able to avoid her negative thoughts due to the mental stimulation she receives from the people and tasks around her. However, when she’s alone at night and everything has slowed down, anxiety becomes unbearable. “Sleep is more of a chore for me,” she says.
To avoid nervousness, she tries to stay busy at night. She prefers jobs where she can work late. Her last job was working as a late night delivery driver for Jimmy Johns, a sandwich shop. She liked to cruise the darkened, empty streets and interact with her customers and coworkers. Those interactions kept her from being alone. Often, she only has only her own racing thoughts for company.
Dulchin believes the need for mental stimulation that comes with ADHD causes patients to seek out nighttime activities in order to avoid anxiety. “If someone is staying at work late into the night after everyone else has gone home, it’s often a sign that they may have adult ADHD,” he says.
Much like when she was working all night, Anna also uses school tasks to distract herself from the anxiety of sleep. “I’ve gotten to the point where it is really hard for me to do homework when anyone else is awake,” she says. “I put my work off until the last minute of the night before, when there are no other distractions.”
In Anna’s case, homework, puzzles, work, and other activities requiring mental effort distract her from feelings of unease and apprehension. Like Anna, many patients with ADHD also suffer from anxiety, which can contribute to negative sleep habits. “It’s not uncommon for people to come in complaining of anxiety, and I’ll ask them a lot of questions and end up coming back with a diagnosis of adult ADHD,” says Dulchin.
When she was young, Anna’s anxiety made socializing with friends hard. “I didn’t like sleepovers because I was always the last person to fall asleep, and it would be scary,” she says. “I’d always get bored and try to make noises that would help wake them up.” Similar to Anna’s recent memory of calling her parents, she says the worst part of sleepovers was when she would have to wake up friends to call her mom to come pick her up because she was too afraid.
Anna’s anxiety and sleeplessness have caused problems in her adult friendships, much like they did during her childhood. In the past, late night activities like making food or watching TV have caused tension with her roommates and other friends. She says, “Even though I was trying my hardest to stay quiet, they still got really mad at me for waking them up.” Her roommates would come into Anna’s room and dramatize the fact that she had woke them up and irritated them.
These types of issues have led Anna to feel alone with her insomnia. Despite the fact that she speaks openly about her disorder, Anna says she feels that her friends don’t truly comprehend what life is like for her. “I really don’t think people fully understand what I go through trying to get to sleep when it should be easy.”
To cope with feelings of loneliness, Anna has found it helpful to talk with other people who suffer from insomnia and ADHD. In particular, she reaches out to her friend Gina during the night. Gina also suffers from insomnia and ADHD, although she does not take medication to manage her symptoms. “I kind of use her as, like, a comfort zone,” Anna says. “It’s nice to know that there is someone else like me who has this similar problem.” They usually talk about the thoughts that are keeping them awake, sharing suggestions and advice with each other. “There are definitely a lot of nights that I wouldn’t have gotten through without her being awake and being there for me.”
Lack of sleep has affected more than just Anna’s relationships; it has impacted her employment and caused her to struggle with responsibilities. While working her last job at Jimmy John’s, she often found it difficult to balance work with school.
Despite Anna being currently out of a job, she still finds that her insomnia and ADHD hold her back. Her irregular sleep schedule causes extreme daytime drowsiness. Anna can’t schedule early morning classes because she knows that she won’t ever go to them. “If I have an early class, it makes it really hard for me to do well, because it’s so hard for me to wake up in the morning,” she says. When she finally falls asleep at 5:00 a.m. or later, it is extremely difficult to wake up at 8:00 a.m. with only three hours of fuel in the tank.
Rodgers believes patients with ADHD and insomnia view sleeplessness as normal. Because they have often lived with insomnia for their entire life, they aren’t as aware of the effect it has on their mood and thought process. “It can interfere with their relationships, success in school and the work place,” she says.
Issues like this have caused Anna to worry about her future. Since she’s been struggling with insomnia for years, Anna says, “I’ve kind of accepted it. I’ve just lived with it for so long, and I’ve dealt with it for so long.” Despite her acceptance of this disorder, Anna fears she won’t be able to manage the responsibilities that come with post-college life.
Mostly, she dreads how her life will be when she can’t create her own schedule. Many patients with ADHD report that they have extreme difficulty waking up. Anna’s sleepiness holds her back from participating in morning activities. “I have to get up two hours before I have to be anywhere because I need that time to fully get ready and prepared for the day,” she says. She worries this will hinder her chances of pursuing a professional career.
Beyond daytime sleepiness, Anna has more serious concerns over her physical health. She says, “I worry about the future a lot. I worry about the effects it will have on my body when I’m older.” Chronic insomnia, like Anna’s, can cause memory problems, depression, irritability, daytime sleepiness, and an increased risk of heart disease. “There has to be a negative health effect at some point when I’m constantly not giving my body the correct amount of hours to recharge,” she says.
At night, Anna will continue to text friends, snapchat pictures of her cat, play Sudoku, and write essays. She will do anything she can to avoid the nighttime anxiety that has plagued her entire life. Sometimes, this reality weighs heavy on her mind. “I know I’ll sleep like this forever.” Despite this depressing realization, Anna has found ways to retain her optimistic and light-hearted personality. “Usually, I wait for everyone to be asleep, and then I eat all of the things.”