At its worst, her sleeping episodes allegedly last three weeks, which caused her to fail the second year of college after she slept through crucial end-of-year exams.
As a child Rodriguez-Diaz was diagnosed with hyperinsomnia, characterized by extreme tiredness, by her general physician. But it wasn't until last September that doctors finally discovered the psychology student had the one-in-a-million Kleine-Levin syndrome.
She goes months at a time without experiencing an episode, but when they strike, she is totally wiped out.
"Life goes on whilst I'm sleeping,” Rodriguez-Diaz, of Leicester, England said. “Reality hits me when I wake up and realize I've missed like a week of my life. I feel a huge setback when it does happen. I miss out on so much. That's the hardest part of it.”
"It's hard to explain to people where I have been. Because it's so rare a lot of people struggle to understand,” she said. "It's really annoying when people call me lazy. I do struggle to deal with the effects of it.”
“But I'm determined to not let it have a big impact on my life,” she said. “It is one part of me and not who I am. It's frustrating because people think I'm just lazy. But I'm not, I can't help it."
Rodriguez-Diaz said that as a child, she was unable spend as much time with friends as she would have liked.
"When I was 4 or 5 would sleep for two or three weeks at a time and the doctors had no idea what it was,” she said. "It was quite bad when I was a child. But then it didn't happen again until I was a teenager. When I was 15 or 16 I remember finding myself sleeping more and more. Even at school I would fall asleep in the study area.”
"I forced myself to go to school. I didn't get teased but I found it very frustrating,” she said. "I was really into my sports but I couldn't do as much as I wanted to because I was constantly tired. I had to force myself to do every day activities and found myself mentally tired all of the time.”
"When I wake up after a few days I feel normal again,” she said. “My friends say they can tell when I have an episode coming on because my mood changes. I get worked up and my behavior changes drastically."
Between February and June last year, Rodriguez-Diaz went through a period of suffering from a number of episodes, which left her unable to spend enough time on her studies.
She said she was dismissed from her course in July last year when she failed to show for a number of exams and missed coursework deadlines because she was asleep.
After a visit to the doctor, in May last year, Rodriguez-Diaz was sent to see specialists at St. Thomas' Hospital and finally got her diagnosis in September.
"It's not as bad as it used to be but I feel like I'm always playing catch up,” she said. "I was sleeping a lot in my first year too but because it didn't have too much of an impact on my work I didn't go to the doctors. It was when I was missing work that I went to my GP. I tried to explain to uni that I had a condition that was stopping me from doing work.”
"But because I wasn't diagnosed until September I had nothing to back it up,” she said. "I didn't have enough credits to pass the year and I was dismissed."
Rodriguez-Diaz last experienced an episode around three months ago when she slept for over 60 hours in just three days. She said she typically snacks on junk food during nap breaks and often puts on weight during an episode.
She has now re-enrolled to resume her studies, and is sitting her second year again.
"I missed so many exams. 60 percent of my course is exams and I missed half of them,” she said. "It wasn't my fault. But they said this is an 'exceptional case' so I am allowed to go back. It's a big relief but I have to redo a lot of work I did in second year. It was difficult for me."
Patients diagnosed with Kleine-Levin Syndrome are known to grow out of the condition eventually, and Rodriguez-Diaz says has learnt to manage her condition in adult life.
"I'm more aware of it now. I know when I'm going to have an episode,” she said. "It used to feel like I was in a dream. It's such a surreal feeling. It feels like you're not really there. This is just a hiccup in my life and I am just waiting until it fades out. I want to be taken serious in life and this isn't helping."
Hussain S, Al Jarman K, Hussain S. Sleeping beauty syndrome presenting with insomnia. BMJ Case Rep. 2018 Oct 12;2018.
A young man previously diagnosed with Kleine-Levin syndrome (KLS) presented with abnormal behaviour over the last 8 days. This included decreased sleeping hours and appetite, hypersexuality, aggressiveness and visual hallucinations. All blood tests and investigations in the emergency department yielded normal results. A preliminary diagnosis of a KLS episode with psychosis was made and the patient was started on a regimen of aripiprazole 10 mg once daily along with lorazepam 2 mg intravenously in two divided doses in the event of agitation or insomnia. On discharge 5 days later, the patient had returned to his premorbid level of functioning and was willing to follow up in the neurology clinic. He was discharged on aripiprazole 10 mg once daily and lorazepam 2 mg two times daily as needed for 2 weeks to help with his agitation and insomnia, as well as lithium carbonate 400 mg at night.
Nebhinani N, Suthar N. Sleeping Beauty Syndrome: A Case Report and Review of Female Cases Reported from India. Indian J Psychol Med. 2017 May-Jun;39(3):357-360.
Kleine-Levin syndrome (KLS), also called "Sleeping beauty syndrome" is a rare, disorder predominantly reported in adolescent males, characterized by recurrent episodes of hypersomnia and to various degrees, hyperphagia, cognitive disturbances, and hypersexuality. Here, we are reporting a case of a middle-aged female, with 16 years delay in diagnosing KLS, poor response to most of the psychotropics, except good response to a combination of lithium, sertraline, and modafinil for last 12 months and also reviewing other female cases with KLS reported from India.
Mudgal S, Jiloha RC, Kandpal M, Das A. Sleeping beauty: kleine-levin syndrome. Indian J Psychiatry. 2014 Jul;56(3):298-300.
Kleine-Levin syndrome (KLS) alias sleeping beauty syndrome, is a rare sleep disorder. Clinically presenting as episodes of hypersomnolence, behavioral and cognitive disturbances, hyperphagia and hypersexuality. KLS may have an idiopathic onset or may be precipitated by neurological event or infection. Until date, no definite underlying cause is established and neither there are any definitive management guidelines. It remains a diagnosis of exclusion after other psychiatric and neurological causes have been ruled out. Coloring of presentation with behavioral and mood elements makes it important for a psychiatrist to be well-informed about the condition to avoid the erroneous diagnosis. KLS is a devastating illness, which robs the patient of time, experiences, and relationships. An early diagnosis and effective management can help patient escape from the morbidity caused by this disorder. Armodafinil and oxcarbamazepine have found to be effective in two of the case. The emphasis of this report is to add to the existing clinical knowledge of neurologists, psychiatrists and physicians. In the future, research is needed on genetic etiology and management of this disorder.
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