Sleep Disorder Misdiagnosed as mental illness, fibromyalgia, alien abductions!

Regular readers of this blog may recall that I have been plagued by sleeping problems for most of my life. For the last few months the specialists have been investigating this and have come to the conclusion that I have non-cataplexy narcolepsy. Talking about coming out of left field. In all the discussions I’ve had with doctors they have told me that my sleeping problems were a symptom of stress, anxiety or poor bedtime habits, rather than a primary problem in its own right. I, of course, have maintained that my sleep was the cause of my anxiety and mood changes, while the psychiatrists were equally convinced that the anxiety and mood changes caused sleep disturbance.

Narcolepsy is a very misunderstood sleep disorder which is frequently misdiagnosed. It is characterised by excessive daytime sleepiness (EDS) and persistent feelings of fatigue. Despite this many sufferers have difficulty sleeping at night due to disturbance in their sleep-wake cycles. If any of these symptoms sound familiar to you I urge you to consult a sleep specialist or neurologist for a diagnosis.

Other symptoms can include:

• Cataplexy, or the sudden loss of voluntary muscle tone where an individual may experience a weakening in some muscles and in severe cases they may collapse
• Vivid hallucinations during sleep onset or upon awakening
• Vivid and frightening nightmares with rapid eye movement and dreaming taking place within a few minutes of falling asleep (most people don’t enter this phase of sleep until approximately 90 minutes of sleep)
• Brief episodes of total paralysis at the beginning or end of sleep
• Drop attacks where an individual can fall asleep in the middle of an activity

Drop attacks
Media tend to portray narcolepsy as the latter symptom - people who unaccountably fall asleep in the middle of conversations, while driving or doing other activities. However these “drop attacks” aren’t experienced by all patients.

In my case, I experience an overwhelming desire to sleep. It can happen while I am giving a speech, while dancing, driving or chatting on the phone. When this occurs I find that my energy levels suddenly bottom out. I can be dancing one moment and feeling fine and the next moment a wave of tiredness rolls over me and I have to lie down. Obviously when you’re in public that can be awkward. Sometimes I can sit down for a few minutes with my eyes closed and the sensation will pass. Other times I have to get to a bed or couch and lie down. It’s not uncommon on a two hour drive for me to pull over three or four times to sleep.

Misdiagnosis
The collection of symptoms that make up narcolepsy are frequently misdiagnosed as other illnesses. Many individuals experience narcolepsy for 10 or 15 years before it is diagnosed. Some of the more common diagnostic errors include:

Epilepsy
The cataplexy or loss of muscle tone is frequently misdiagnosed as an epileptic fit.

Mental Illness
The vivid dreams and hallucinatory effects that characterise sleep and the periods of waking and falling asleep can lead doctors to believe that a patient is experiencing some sort of psychotic episode. Add in the combination of excessive fatigue and irritability from disturbed sleep and it’s no wonder a patient with narcolepsy can appear to be showing the nervous “on edge” disposition of a patient experiencing psychosis.

Excessive fatigue can also lead patients to show symptoms of sluggish depression. This is further complicated by the fact that antidepressants can have a helpful effect on narcolepsy. Some tricyclics and SSRIs can improve sleep or reduce cataplexy. If the drugs work, this can lead the doctor and patient to believe they have the correct diagnosis.

Alien abductions
Alright this one is just plain weird, but some scientists have speculated that narcolepsy could explain the phenomenon of night time alien abductions. They suggest that the hallucinatory effect of narcolepsy is so terrifyingly real that individuals dreaming they have been abducted, dissected and returned to their beds may have been dreaming. There is no research to support this hypothesis but it’s an interesting concept. I can attest to the reality of the horror that I experience most night in dream state. Maybe one day they will round up all the individual claiming to have been abducted during the night and test them for narcolepsy.

Chronic Fatigue Syndrome
Some of the symptoms of narcolepsy are similar to those of Chronic Fatigue Syndrome and Fibromyalgia. Excessive daytime sleepiness, ongoing fatigue, night-time sleep disturbance and early onset of REM sleep and dreaming can also occur in fatigue oriented illnesses.

Treatment
Narcolepsy is a neurological condition that is not curable, however it is possible to treat it with lifestyle changes or medication. Some patients can gain relief from excessive day time sleepiness by taking a short nap each day. The other options are tricyclic antidepressants to relieve cataplexy and improve sleep, SSRI antidepressants for sleep, and methylphenidate (also known as Ritalin) to keep patients awake during the day and sleep peacefully at night. Unfortunately the side-effects of these medications can be unpalatable so some sufferers do not gain relief.

More information:
National Institute of Neurological Disorders and Stroke
Stanford University Center for Narcolepsy