Marilyn’s Story
The Incredible Shrinking Mother

March 5, 2009

A few years ago I learned that my cousin, a newly married medical resident, was diagnosed with narcolepsy. I remember thinking, “Oh the poor guy, what a bad break”. I wondered how it was affecting his life. Little did I know that I too, had narcolepsy.

Last month, just a after my 49 th birthday, I was diagnosed with narcolepsy. I went to my family physician with concerns about forgetfulness and difficulty concentrating. I also complained of feeling so weak I could barely get through the day. My husband accompanied me because my symptoms had become so severe that my family was very worried. The physician referred me for a sleep study to rule out sleep apnea as a cause. I believed that I had no trouble sleeping and my husband confirmed that I didn't snore. I was sure the sleep study was a waste of time, but I went so that sleep apnea could be ruled out and we could find out what was really wrong with me. During the initial interview the sleep doctor, a neurologist with additional specialized training in sleep medicine, asked me about napping. “Do you dream when you nap, all the time, even during a short nap”? I answered an enthusiastic, “yes” to each of the questions. I was a world class napper and I dreamed quickly and easily all the time. I didn't know that my affirmative answers to those questions, along with my some of my other responses on his questionnaire, raised the index of suspicion that I might have narcolepsy. The 2 night sleep study did reveal that I had obstructive sleep apnea and that the apnea was resolved by using the BiLevel machine. The following day I participated in a MSLT (multiple sleep latency test) or nap study. The results were consistent with narcolepsy. It was explained to me that individuals with chronic sleep apnea may be so tired and so “starving” for REM sleep that they may exhibit results during a sleep latency test very similar to that expected for someone with narcolepsy. The BiLevel I would begin using for my sleep apnea would also be a tool for diagnosing narcolepsy. The daytime sleepiness experienced by narcoleptic is not relieved by a good night's sleep. Using the BiLevel for about 10 days eliminated my morning headaches and did seem to relieve many of the cognitive symptoms; however my experience of daytime sleepiness was unchanged. I would be started on medication for narcolepsy.

At first I denied that I could have the disease. I couldn't have a brain disease, certainly not one described as chronic and incurable. I didn't fall asleep all the time. I didn't suffer from the attacks of cataplexy or have sleep paralysis or any of the more obvious symptoms I was reading about. Then I read about automatic behavior. I realized that explained why I found the milk in the pantry and the flour in fridge. I was amused when I caught myself about to put a load of laundry in the trash compactor. Things like that may seem comical when they harmlessly happen around the house. There was nothing funny about it when I discovered important files in obscure places at work and couldn't explain how they got there.

I looked back through my life and began to identify symptoms that had probably started when I was in my late 20's. There had been a period of time about that many years ago, when I did recall fighting not to fall asleep during the work day. I recalled asking the receptionist to hold my calls for a half hour, during my lunch break, so I could nap at my desk. With three small children and a full-time job, needing to nap occasionally during the work day didn't seem at all significant to me. Needing a cup of coffee or two in the afternoon to get through the workday didn't seem odd or even unusual. Then I remembered my 4 th pregnancy at age 38. I had been telling friends for years how exhausted I was during that pregnancy; how different it was from being pregnant at 26. I added that I could never have worked during that year, though I had worked almost up to my delivery date in my earlier pregnancies. I just assumed it was my “advanced maternal age” that made me so tired. I never connected the extreme fatigue to the fact that, because I was pregnant I greatly reduced my caffeine intake.

Then there was that strange incident about 9 years ago. I was walking in a store with my kids when my left side stopped working. I just suddenly couldn't walk. My leg just wouldn't hold me. I felt fine. It resolved itself after about 15 minutes. My doctor referred me for an MRI that was normal. It hadn't been a stroke. He mentioned it might have been a TIA. Nothing else unusual happened so it just became a curious blip on my medical record. I had never even heard of an event called cataplexy.

I recalled that over the years I had discussed concerns about tiredness, especially in the afternoon and early evening, with at least 3 different doctors. I requested my thyroid be checked on at least 2 occasions. The doctors were sympathetic but always normalized the tiredness as simply to be expected as a young mother of 3, then as an older mother of 4, then finally as a part of perimenopause. I then realized how much I had shrunk my life in order to fit it into the limited hours each day I could function. I adapted over the years by taking jobs that didn't require working at night. I kept caffeine in my system. I became known at work for always having a cup of tea at hand. It became my trademark. My bedtime kept getting earlier and earlier. It was a struggle to stay up until 8pm to have time with my husband and family. I stopped driving at night. I rationalized that it was because it is harder to see in the dark, but I knew I that I also felt very uncomfortable about driving in the dark so I avoided it whenever possible. My adult children attended parent/teacher night and other evening events for their younger sister.

I would never have guessed my tiredness was due to a narcolepsy. A disease, that although incurable, was very treatable. All I knew of narcolepsy was that those people fall asleep uncontrollably. That would seem a bother and an embarrassment and certainly a dangerous symptom to have while driving. But I thought it was episodic, similar to epilepsy and could be controlled with medication. That is all I knew. I did not know that the symptoms could be far more pervasive. I did not know that individuals suffer with symptoms of narcolepsy an average of 14 years before they are diagnosed. I did not know that undiagnosed narcolepsy ruined careers and destroyed relationships. I did not know that an undiagnosed or untreated narcoleptic has a 10 to 12 times higher likely of causing a car accident. I did not know that narcolepsy was as common as Multiple Sclerosis.

It has been helpful to read internet blogs and postings from fellow narcolepsy patients that describe their experience as just feeling like “crap” all the time and the need to just keep “pushing through”. I can relate to these words better than the frequently listed the symptoms like, “pervasive daytime sleepiness” and “sudden overpowering urge to sleep”.

In my case the disease seems to have progressed slowly over many years. The medication I have been prescribed seems to be working very well. My husband and children have commented that it is nice to have me back. I appreciate being able to stay awake late enough to tuck my 10 year old into bed. I appreciate having 3 to 4 additional productive hours every day.

I now understand how undiagnosed narcolepsy had caused misunderstandings, conflicts and losses in my life. I am very lucky to have had a spouse and children who have hung in there with me through all these years of the incredible shrinking mother.

I have read many stories of other narcoleptics, some who adapted and functioned with their disease for years, as I did. But I also read about teenagers and young adults who were hit hard and fast by the disease. They have had to reorganize their whole lives around medication and nap schedules and had to alter their career ambitions to accommodate limits imposed by this disease. I have also read of individuals who were not diagnosed until after their untreated sleepiness resulted in a tragic car accident.

I plan to put some of my new found extra time and energy in to helping support public and professional awareness efforts. I have been a licensed social worker for over 25 years and the clinical director of a few mental health programs that served both children and adults. Since my diagnosis, I have learned how common it is for individuals with undiagnosed sleep disorders to spend years in treatment for depression. The difficulties inherent in living with an undiagnosed sleep disorder may result in a person becoming depressed , but the depression is secondary to the sleep disorder. No amount of therapy can cure the symptoms of a sleep disorder. I now understand the need for mental health professionals to learn the red flags that indicate a client may have a sleep disorder, so that they can appropriately refer them for evaluation. Mental health professionals need to learn the questions to ask to differentiate symptoms of a possible sleep disorder from that of mental health illness. For example they need to know a child or adolescent who presents with symptoms that suggest ADHD may have in fact have an undiagnosed sleep disorder. A client may describe an experience of performing a normal task and appearing to be “normal” to observers however having no memory for the event. This could have been dissociative episode or it could have been an experience of automatic behavior, a symptom on narcolepsy or another neurological concern. A cataplexy episode might be assumed to be a conversion reaction. None of my otherwise well informed highly trained friends in the field that I wrote to about my diagnosis ever suspected I had a sleep disorder. They would have thought, as I did, that a person with narcolepsy would be pretty obvious. If a client suddenly dozed off during an intake interview, only then might a clinician consider the possibility of narcolepsy. No one who ever worked closely with me, or knew me socially ever saw me suddenly doze off, nor did I even appear consistently sleepy. They may have noticed a little more than occasional forgetfulness and perhaps “ADHDness”.

People have an amazing ability to adapt. I was lucky enough to have a supportive family and enough education to allow me some flexibility in my career. I adapted until the symptoms became so severe there wasn't enough tea and coffee to drink or an early enough bedtime. Early diagnosis and appropriate treatment can save individuals from years of heartache, lost jobs, relationship conflicts and even injuries due to accidents.

If you would like to share your unique sleep story, please contact us at: PatientStories@talkaboutsleep.com
Or submit your story in a Microsoft Word or Text format to: PatientStories@talkaboutsleep.com