Most, if not all of the research I have read suggests that symptoms of N+C do not change or worsen over time. I beg to differ! Obviously these articles and studies have not been written by someone who has narcolepsy.
In my own personal experience I can tell you that indeed cataplexy can worsen over time. What was once just weak knees, slack jaw, and wobble neck (for over ten years!), has now made its grand entrance as full body attacks. However, with this new severity has also come an increased body awareness that I rather cherish. I can feel an attack coming, and sometimes I can even "stop" them from progressing to full body attacks. It's as if I am tapping into the intracellular functionings of my body, and either flipping the switch to stop, or preparing for the inevitable collapse. Whatever the end result, the body awareness that precedes a cataplexy event, is deafening.
Narcolepsy on the other hand, seems to wax and wane like the phases of the moon. Some days are good, some days are bad. Most women also note that N symptoms change with their menstual cycle. Whatever the case, there are indeed changes in N+C, it is not constant.
What causes these changes? Stress, life events, medicine, work schedule, child bearing and rearing, diet & nutrition (or lack there of), hormones, exercise, trauma etc. The list goes on and on. We don't know and we don't have answers. Our bodies give us cues, we just need to listen.
Why is this false assumption so readily stated on the majority of narcolepsy information? I have no idea. I think I'm going to have to conduct a little research study of my own to disprove these inaccurate suspicions! ;-)
Monday, April 22, 2013
Friday, April 5, 2013
What in the world is "cataplexy" ?
Imagine entering into a dream state of REM while completely awake, losing all muscle control and becoming paralyzed all while being completely 100% conscious of everything.
Imagine laughing, crying, getting embarassed, being angry or being overjoyed and collapsing in the middle of it- powerless to move or speak.
Imagine while scolding your child or arguing with someone, your jaw literally drops and you can't move your tongue or mouth to form words.
Imagine always looking for a wall or counter to brace yourself from your knees buckling during social interactions with friends.
Imagine having to yell for your husband to grab your sleeping child from your failing arms, as you carry them to bed because perhaps you heard something funny on the TV.
Imagine a sudden surge of emotion (any emotion) and then the ominous feeling of life and strength leaving the muscles of your extremities as you prepare for the inevitable collapse and shut down of your body, but not your brain.
Sudden loss of muscle tone when experiencing emotions- this is cataplexy.
Cataplexy is a symptom of narcolepsy, but not all narcoleptics have cataplexy. It is almost a non-existent condition without the presence of narcolepsy. Status cataplecticus is a state of cataplexy that lasts several hours to several days. Sufferers have been hospitalized by this condition. Abrupt withdrawal from venlafaxine or clomipramine (anti-cataplexy meds) can lead to status cataplecticus as well.
When an individual is in REM sleep at night, paralysis naturally occurs so that we do not act out our dreams. A person with narcolepsy has altered sleep/wake regulation. The wiring in a PWN brain perceives emotion as REM, thus the muscle meltdown. It is quite fascinating, and I look forward to reading new research regarding this phenomenon.
Although disturbing to watch, cataplexy is for the most part painless unless you hit your head or land in an unnatural position. Sometimes a cataplexy attack resembles a seizure in that the sufferer may twitch or spasm. It is important to remember that during cataplexy, the person remains fully conscious and can hear, smell and feel everything.
What to do if you are with someone (PWN) that has a cataplexy attack:
As a bystander or loved one, help the PWN to the ground if you see them struggling to stand or seem unsteady. Also just make sure their airway is clear, meaning hold their head straight so they can breathe. If a persons head is tucked into their chest or if their head falls back- it is extremely difficult to breathe (try this yourself). Do not touch, rub or jostle the person or try to "wake" them (this is really irritating and it will not work). Lastly, a cataplexy attack can be very embarassing, be sensitive to this and don't try to crack jokes or laugh at the person.
Imagine laughing, crying, getting embarassed, being angry or being overjoyed and collapsing in the middle of it- powerless to move or speak.
Imagine while scolding your child or arguing with someone, your jaw literally drops and you can't move your tongue or mouth to form words.
Imagine always looking for a wall or counter to brace yourself from your knees buckling during social interactions with friends.
Imagine having to yell for your husband to grab your sleeping child from your failing arms, as you carry them to bed because perhaps you heard something funny on the TV.
Imagine a sudden surge of emotion (any emotion) and then the ominous feeling of life and strength leaving the muscles of your extremities as you prepare for the inevitable collapse and shut down of your body, but not your brain.
Sudden loss of muscle tone when experiencing emotions- this is cataplexy.
Cataplexy is a symptom of narcolepsy, but not all narcoleptics have cataplexy. It is almost a non-existent condition without the presence of narcolepsy. Status cataplecticus is a state of cataplexy that lasts several hours to several days. Sufferers have been hospitalized by this condition. Abrupt withdrawal from venlafaxine or clomipramine (anti-cataplexy meds) can lead to status cataplecticus as well.
When an individual is in REM sleep at night, paralysis naturally occurs so that we do not act out our dreams. A person with narcolepsy has altered sleep/wake regulation. The wiring in a PWN brain perceives emotion as REM, thus the muscle meltdown. It is quite fascinating, and I look forward to reading new research regarding this phenomenon.
Although disturbing to watch, cataplexy is for the most part painless unless you hit your head or land in an unnatural position. Sometimes a cataplexy attack resembles a seizure in that the sufferer may twitch or spasm. It is important to remember that during cataplexy, the person remains fully conscious and can hear, smell and feel everything.
What to do if you are with someone (PWN) that has a cataplexy attack:
As a bystander or loved one, help the PWN to the ground if you see them struggling to stand or seem unsteady. Also just make sure their airway is clear, meaning hold their head straight so they can breathe. If a persons head is tucked into their chest or if their head falls back- it is extremely difficult to breathe (try this yourself). Do not touch, rub or jostle the person or try to "wake" them (this is really irritating and it will not work). Lastly, a cataplexy attack can be very embarassing, be sensitive to this and don't try to crack jokes or laugh at the person.
Wednesday, April 3, 2013
The Blessing of Wisdom
An abundance of life lessons reside within the book of Proverbs in the Bible. Proverbs 3 teaches the blessing of wisdom. I suggest that you read the entire chapter, however Proverbs 3:24 may hold a special meaning for a PWN (person with narcolepsy).
"When thou liest down, thou shalt not be afraid:
Yea, thou shalt lie down, and thy sleep shall be sweet." Proverbs 3:24 KJV
Many narcoleptics are tormented by sleep paralysis and/or hypnogogic hallucinations. I find comfort in this beautiful verse. Nurture your spirit and soul as much (if not more) than you nurture your body.
"When thou liest down, thou shalt not be afraid:
Yea, thou shalt lie down, and thy sleep shall be sweet." Proverbs 3:24 KJV
Many narcoleptics are tormented by sleep paralysis and/or hypnogogic hallucinations. I find comfort in this beautiful verse. Nurture your spirit and soul as much (if not more) than you nurture your body.
Subscribe to:
Posts (Atom)