Friday, 10 May 2013

The "unknown" Narcolepsy

What is it?

Narcolepsy is a chronic, autoimmune sleep disorder, which often begins in childhood or adolescence.
Its primary symptoms are:
Frequent daytime drowsiness, with uncontrollable urges to sleep, relieved by taking short naps;
Cataplexy, which is the sudden loss of strength in the entire body or in specific segments, provoked by strong emotions or scares. No fainting!
Hypnagogic hallucinations, which is seeing unreal  and often scary images while falling asleep;
Sleep Paralysis, which is the inability to move when waking up
Insomnia, or nocturnal sleep difficulties

Which kinds are there?
Narcolepsy with cataplexy or without cataplexy.
How is it diagnosed?
The diagnostic is made by its symptoms and by a Polysomnography, followed by a Multiple Sleep Latency Test.
There are other biologic signs:
A diminution of orexin in the Cephalorachidian Fluid;
 Increased prevalence of HLA subtypes  (HLA DQ B6 01 02)

How to treat?
It depends on the symptoms. The purpose is to treat drowsiness, avoid cataplexy and the hypnagogic hallucinations as well as insomnia. Wakefulness stimulants and hypnotic drugs are implied.
Do not mistake with laziness!
Do not mistake with epilepsy!
Do not mistake with other sleep related disorders!
Do not mistake with chronic sleep deprivation (lack of sleep)!
It’s a rare but serious disease! It must be treated!
If you fall asleep all over the place, get yourself treated!

Professor Teresa Paiva
Lisbon, May 10th 2013 


Anonymous said...

Hello Dr. Teresa!
There is a facebook group called “Narcolepsy Friends” where we can find some advice.
Although my symptoms are “light”, almost a pseudo narcolepsy of sorts, I found that there are some people who feel the same way as I do: trouble waking up in the morning, and falling back asleep at night, troubled hallucinations and nightmares.
It’s impressive how the human being is “alike” in every part of the world! The Narcolepsy Friends are American, English and Australian. And their symptoms are identical.
We live in different countries and cultures, not to mention education, the way we were raised, different school systems, some people with academic degrees, others not so much, but we all share something in common: drowsiness and tiredness.
When I talked with them, I felt at “home”, we are “alien”, born in the same planet and with the same characteristics. It is as if I’d found someone from my family, because they understood me ad lived identical situations.
I found out that almost everybody complains about the lack of understanding by other family members and friends, and that there is little to no awareness on Narcolepsy; many of them were considered to be mentally ill.
They see this disturbance as a challenge for any physician, while the patients only look for help when the illness is well underway, and exhibits all of its symptoms.
I showed them that I didn’t fit exactly into all the patterns of the full diagnostic. But since they are such amiable people, they answered “It’s OK. What matters is that you also have some sleeping issues. You’re one of us, and belong to our group.”
No one was immediately diagnosed with Narcolepsy, they searched for several doctors, extensive examinations, after much investigation, this disturbance was found.
One woman complained that it took the definitive diagnostic over eight years to be done.
According to them, Narcolepsy’s brain pattern is similar to depression and Chronic Fatigue, and the symptoms of cataplexy can be mistaken for those of epilepsy, conversion syndrome and PTSD.
A woman spoke on how she was in a car accident and her twin daughters stood between life and death. During her girls’ recovery, she suffered with the fear that they might die and blamed her for the accident. The children made it just fine, but a while later, the mother began to have sudden “falls” that would happen every day. She developed cataplexy very suddenly.
Another American girl told me she was in the army, and suffered from nightmares, PTSD, and then got Narcolepsy.
According to other cases, the symptoms resulted from a divorce, or got worse after a death in the family. Apparently, the degree of anxiety could be behind it all, the shock of death, a deep suffering, could unravel the whole nervous system.
And the recounts amount to be incredible: a girl said that “she hates to stand in the supermarket line”; especially when an old lady comes along and excuses herself to pass in front of her. She agrees to the request, allows the old lady to pass ahead, but feels so bothered for having to wait longer that she “falls on her knees” and falls asleep.
Another American woman told that she’d get so angry when her sons did some shenanigans that while arguing with them, she fell asleep.
I’m under the impression that these women don’t fall asleep because they are drowsy, but due to stress and due to the fact that they feel bothered.
It seems that cataplexy is related to the state of emotions and not with the excess of sleep.
But afterwards, they told me that they were sleepy during the day and that under certain circumstances, they would get temporarily exhausted, needed to sit down and rest, or else they’d fall out of balance.


Anonymous said...

I recognized myself in some of these, and was shocked.
Besides that, there is another problem common to all: in the US and UK there are legal disputes against health insurances that don’t cover drug expenses.
A drug called Xyrem, forbidden in many countries, exists in the US, at an expensive price. The insurance won’t cover it, and some people are deprived of these drugs because they have no money.
I think that the illness’ diagnostic is made harder precisely because some patients don’t have access to the precise benefits.
An Australian teenage boy sleeps over 15 hours per day, only wakes up to eat, doesn’t go to school and his parents became desperate. Since in Australia this drug isn’t sold, they travelled to San Francisco (CA) so that he could get a consultation by sleep specialist that would prescribe him the drug.
There are dramatic situations. It isn’t just the difficulty behind the diagnostic; the price of the drugs, what is harder for them is other people’s lack of understanding. Some are accused of pretending the symptoms of Cataplexy as an excuse for skipping their jobs, there are reports of people whose boyfriends and companions can’t deal with the drowsiness. They feel abandoned and alone. Different, like the “ugly duck”.
Narcolepsy is far worse than I’d imagine. Fortunately, it isn’t very common.
Still, we need to know if there are a lot of people without a diagnostic. In that case, perhaps it is far more common than we thought.
If there was more knowledge and communication on the subject, it would be easier to assume the symptoms, to lose the shame in speaking about it, and the prejudice that comes from ignorance and lack of information.
Thank you for being so thoughtful with me, and for having someone in this country that cares about sleep disorders!

Joana Macedo Luis

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