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Thursday, February 28, 2013

Signs and Symptoms

My signs and symptoms associated with narcolepsy and cataplexy are ever evolving.  Every day is different and each day holds new adventures and challenges.

Here are a few of the symptoms I experienced years ago, prior to diagnosis.

Fatigue: An almost too obvious sign of narcolepsy, fatigue becomes a normal part of existence for an individual with N. Everyone gets tired, right? Yes, so that is why fatigue is not an overwhelming symptom that sends you searching for answers from your doctor. I can remember sitting in my daytime college classes with either a Rockstar or Starbucks always by my side, and still falling asleep. I envied those that could be in class all day without appearing the least bit drowsy. Class was torture sometimes.  After being alert for the first ten minutes, the nodding off would start.  My eyes would close and my head would drop until my chin hit my chest, then my head would snap back up and my eyes would open. Caffeine did not work for me as it did for others. After drinking a quad shot caramel macchiato, I could go directly to sleep- I thought everyone could.  It wasn't until I had a discussion with an anesthesiologist friend, that I thought twice about how caffeine affected (or didn't affect) me.  His theory was that I must metabolize caffeine extremely fast. Maybe so, or maybe this was also a symptom of N.  It really doesn't matter what the reason, it's just a tiny piece of the puzzle.

Cataplexy: For years I experienced a strange sensation when I laughed. It sort of felt like I was going to pass out, but not really. I never knew how to verbalize this feeling properly- it was hard to describe. My knees would also slightly buckle when I would get angry or embarrassed. These feelings passed quickly and did not cause me to fall down. It was dismissed by doctors as a Vagal response and I was told to breathe more when I laughed. In a nutshell, cataplexy is a loss of muscle tone usually triggered by emotion- you are completely conscious, but paralyzed.
Now my cataplexy attacks can involve my whole body and are especially worse if I am laying down. Sometimes my head will drop, or my elbows and arms will relax, along with my hands. If I am holding something in my hand it will inevitably slip through my fingers during an attack. If I am talking at the onset of an attack, my jaw will go slack as well as my tongue, and I begin to slur my words. I usually just quit talking until the feeling passes.
I've gotten used to recognizing an attack coming on, so I can at least prepare myself. Instead of falling down, I lean onto something ( or someone) for support, or lower myself to the ground slowly so that I don't have far to fall.

Automatic Behavior: A somewhat frightening component of narcolepsy, is the ability to perform functions/tasks while having a sleep attack. Sleep attacks can come with little warning, it is an overwhelming desire to just shut your eyes for a second and go to sleep. Now I truly understand what the saying "like a ton of bricks" means. Your eyes, head and body feel like a ton of bricks has been placed on them. For me, this happened while working graveyard shifts as an RN in the neonatal intensive care unit. I would have to stand up to do my charting, even then I would "sleep chart". Being aware that I was nodding off, all the while still writing my nursing notes, I would re-read my entries that were written as nonsensical gibberish. It was embarrassing to have crossed out entries and edits on my nursing notes. Other nurses reassured me that they did this too, so I didn't feel too bad about it, just thought that it came with working the graveyard shift territory. It wasn't until the last couple months that I worked, did my automatic behavior get worse. As I would go to the supply rooms, I would literally be sleep walking while getting supplies. I would nod off right in the middle of walking, take a few steps then snap out of it, only to nod off again and again. Although I never hurt a patient, thank God, I became painfully aware that I was becoming a potential hazard to the precious babies that I cared for. You see, during automatic behavior, if you fall asleep while performing a task, you continue that task even though you are asleep. My hands would continue working, while my brain went to sleep. For example; while taking blood pressure, changing a diaper, swaddling, and preparing feedings. This led me to constantly double and triple check my work.

I never would have dreamed that I had narcolepsy, but by finding out that I had cataplexy, I was led to learn about narcolepsy. Understanding what narcolepsy truly is takes time and patience. You won't get all of the answers at once because there are still answers yet to be discovered. So discover what works for you, it may not be what works for everyone else.

Wednesday, February 20, 2013

Stay Positive!

Last night I was all set to post my entry for Signs and Symptoms that I typed up on my iPhone earlier in the day. As I went to put the finishing touches on it from my laptop, to my dismay, all that was there was the title. I stared at the screen for a moment, all it said was Signs and Symptoms.  This could not be! There must be a mistake, I spent over an hour on this entry. So I went and grabbed my phone hoping that it was still on there. Signs and Symptoms... I checked my iPad, there again was the title just glaring at me. After checking 4 different electronic devices, I was finally convinced that it was gone.  To me it was my little creative work of art, just completely lost in cyber space.  I became a little whiny, maybe a lot whiny.

My husband verbalized out loud what was already floating around in my head. "Why would you do that, why would you put that on your phone?" It wasn't said in a mean or scolding way, it was said with utmost compassion.  My response, "I know I shouldn't have, I just thought a $600 piece of equipment could handle a blog entry."  It seemed as though my husband was just as bummed about my loss as I was.  Even though I was frustrated that my work was lost, I was truly touched that he cared about my misshap, and it overshadowed my despair.  Thank you Lord, today is a new day and I can start again. Thank you for bringing me a husband that takes care of me and supports me.  Signs and Symptoms... this misshap is one of them!

Wednesday, February 13, 2013

My Current Rx, Part 4

Reduced Exposure to Toxins:

For most people, the majority of our time is spent at home or work.  Since you more than likely can not change your work environment completely, this post refers mostly to changes you can make at home.

Most of us expose ourselves to toxins on a daily basis. From the time we wake up and brush our teeth to the time we got to bed, our bodies are assaulted dozens of times by harmful agents.  These harmful agents sometimes come in the guise of fancy, pretty packaging where they look and smell irresistable.  These are mostly your body products, makeup and toiletries.  Have you ever thought about what you are actually washing your hair and body with?  Ever thought about the lotions you are rubbing into your body, or the makeup you put on your face?  Ever think twice about dry-cleaning?  I can't remember the last time I went to the dry cleaners, it's been at least ten years.

Skin is the human body's largest organ, it is our biggest defense against disease and infection. Even the smallest of scratches can lead to an invasion of harmful pathogens into our bodies.  Why do we then continually lather our bodies with harmful chemicals?  Because they smell good or come in a cool bottle?  Or better yet, because some celebrity has their name on it?  Don't get me wrong, I love all the bath shops as much as anybody.  Especially when they smell good enough to eat. But when you stop and think about it, would you eat your lotion?  Then why would you put it on your skin, where it is directly absorbed into your body?

Packaging that isn't so pretty and lacks celebrity endorsements, are cleaning products.  Our cupboards are filled with items ranging from dish soap to floor cleaner to fabric spray.  Many of these items are  referred to as "estrogen/endocrine disruptors".  Daily exposure to cleaning products can cause weight gain, or weight retention. (A little something to keep in mind when diet and exercise aren't working). These common household cleaning chemicals are also very harmful to children and pets.  Making your own cleaning products can save tons of money as well as being environmentally friendly.  I have been using water, vinegar and lemon essential oil to mop my floors- smells great and is so cheap! Next step is to make laundry soap, I have several friends that already do this- I think I will add Lavender and lemon oil for a refreshing clean (healthy) scent.

So visit your local health food store to see what they have as far as alternative cleaning products, both for you and your home.  My mom recently bought "castillo" soap from Trader Joes for shampoo/soap purposes. It only has a few ingredients and has peppermint oil in it!  Read your ingredients list just as you would with your food labels.  Avoid dyes, sodium lauryl/laureth sulfates, and parabens just to name a few. If you can't avoid dry-cleaning, check to see if they use PERC (Tetrachloroethylene).  It is a common chemical used in dry-cleaning that accumulates in body fat and causes increased risk for breast cancer.  Some great resource sites are: www.breastcancerfund.com  www.niehs.nih.gov   www.thedailygreen.com

Be kind to yourself and take care of your skin! Your, lungs, heart, brain, reproductive system, and all the teeny tiny cells- so basically your whole body- will thank you for it!

Sunday, February 10, 2013

My Current Rx, Part 2

Exercise:
The human body absolutely amazes me in its abilities and a beautiful physique is like a work of art.  Unless you're one of the lucky 1% of people just born with good genes, you have to work hard to get results.  Narcoleptics are especially challenged with the issue or risk of obesity.  Is it due to a slower metabolism, lack of energy, or poor quality of sleep?  It's probably a combination of all three I suppose.

I have come to the realization that fitness and exercise must become as much a part of my daily life, as eating and sleeping.  Nine times out of ten I do not want to, but feel so great after I do.  If I workout in the morning I have a better chance of actually getting it done.  If I wait until the evening, I let all sorts of excuses get in the way.

Exercise and I have a love/hate relationship- it loves to kick my butt, and I hate to feel like I am going to die.  I do love however, to feel my body getting stronger and more efficient. Make goals for yourself, no matter how big or small.  Work each day to obtain those goals.  Athough I do yoga and various Jillian Michaels DVDs (love to hate her, she literally kicks your butt), I'm currently trying to build my running endurance.  Each time I run I try to go a little faster or a little farther.  Shatter your current goals and set new ones everyday.  It's like a little competition against yourself.

Working out just one day a week isn't going to cut it, I hate to break it to ya.  As a narcoleptic you're looking at probably 4-5 days to maintain and 5-6 days to lose weight.  Of course you always want to consult your healthcare provider before starting an exercise program. Combine exercise with a healthy low cal nutrition program and you're on your way to feeling great. Try to drink 48-64 oz of water daily. If you currently don't exercise, start making small changes like parking farther away in a parking lot or taking the stairs instead of the elevator. Your body will thank you.  Evening exercise may help you sleep better, how nice would that be?! Happy Dreams!

Thursday, February 7, 2013

My Current Rx, Part 1

I'm not well versed in popular N+C meds, as far as actual experiences.  I tried Provigil for about a month. It made my head buzz the first half hour after ingesting it-didn't like that too much. During the first week it kept me from having sleep attacks, but after that- the honeymoon was over.  Week two brought exhaustion- I had this "fake" stimulus and my body just wanted to crash. So I began taking a vacation day away from being medicated. I just felt like I was running a marathon, utter fatigue. With week 3 came the horrendous headaches-everyday. Call me a wimp, but I'd rather be tired than miserable.  So after talking with my husband, it was a clear choice to stop the medication. That was last April. So now my prescription is basically healthy eating, exercise, essential oils, and reduced exposure to toxins.

Healthy Eating:
By default my household has become about 90% gluten free. Well, 100% GF for my husband- the rest of us cheat a little.  About 14 months ago my husband found out that he has Celiacs and he quit eating all gluten immediately. His symptoms improved so fast and he felt so good that he hasn't looked back and isn't even tempted to cheat. So our household has evolved to be very gluten free friendly. No processed foods, no wheat flour, no wheat pasta, no soda, no bacon, no diet products, absolutely no artificial sweeteners or high fructose corn syrup- we buy fresh or frozen veggies and fruit instead of canned. Normally we have almond milk on hand and occassionally we buy Organic lactose free milk. For us its all about simplifying- eating fresh and homemade! Just try to buy things with less than 5 ingredients listed- you will be amazed at what you've been putting into your body!

You don't have to change the way you eat overnight. Something as simple as reading ingredient labels before you throw an item into your grocery cart, can be very eye opening.  Try to stay away from artificial sweeteners, high fructose corn syrup, partially hydrogenated oils, nitrates and monosodium glutamate. Replace your vegetable or canola oil with olive oil- yes you can bake with it! Replace margarine with butter (use in moderation of course). Fuel your body with healthy choices to obtain premium physiological function!

Tuesday, February 5, 2013

I Have Narcolepsy, LOL

Hi nice to meet you, I have Narcolepsy LOL.  I can't help but giggle every time that I tell someone that I do indeed have Narcolepsy.  It's really not a laughing matter. However, I can not get offended when people laugh at me when I tell them.  It's not their fault, they don't know any better.  Portrayals of narcoleptics in the movies are inaccurate to say the least.  So it is up to us (the narcolepsy community, friends and relatives) to help spread the word and increase awareness.  By educating and informing, hopefully individuals will receive proper diagnosis within months instead of years, as is currently the norm.

Now for a little education.
Narcolepsy: Chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally.  (National Institutes of Health- U.S. Dept. of Health and Human Services, brochure titled Narcolepsy. The following symptoms are paraphrased from said source as well.)

Symptoms:
EDS: Excessive Daytime Sleepiness
Cataplexy: Sudden loss of muscle tone commonly triggered by a sudden surge of emotion such as anger, fear, excitement, humiliation, and laughter. Individual is completely conscious even though they may appear to have "passed out". (My personal favorite)
Sleep Paralysis: Upon waking or falling asleep, temporary inability to move or speak. As with cataplexy, individual is completely conscious.
Hallucinations: Can occur with sleep paralysis or by itself upon waking or falling asleep. Vivid, delusional experiences that are mostly visual, but may also involve the other senses. An intrusion of REM into the wakeful state. Often frightening.

That is just the tip of the iceberg. There's diagnostic testing, finding the right doc, getting treatment, the harsh assortment of drugs for treatment and all of the lovely side effects they bring, work issues, disability (to qualify or not to qualify, that is the question), lack of understanding from family and friends, social implications, learning challenges, and how to beat the "lazy" label.  I've become a member of Narcolepsy Network and have found them to be a valuable resource these last few months. Also I have joined the NN group on FB. Its been great to communicate with fellow PWN's. It has also been very eye opening regarding the constant tug of war between treatment and meds vs. med side effects and ineffectiveness.

Since I have decided to not take prescription meds for my N+C, I am thankful that I do not experience the ups and downs caused by meds currently prescribed to help treat narcolepsy and cataplexy. I do feel sympathy for those that take meds to help their N and in return get horrible side effects, that they have to take yet more meds for. So the vicious cycle continues, it must be so exhausting. I do also see the people whose lives have been changed positively due to their N meds. That is a wonderful thing. Bottom line is that treatment can be a long winding road, filled with bumps along the way.

So this is my first attempt at blogging, don't hold it against me! We can learn together, or actually you can teach me... I welcome all positive and informative comments.  This blog is intended to increase awareness of N+C as well as explore natural ways of coping and healing.
Good night, sweet dreams ;)