Tips for Wakefulness from the Narcolepsy Network

General
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Source: http://narcolepsynetwork.org/about-narcolepsy/treatment/tips-for-wakefulness/

Do these tips work for you? Do you have other tips to share? Leave a comment to let us know what helps.

Tips for Wakefulness
by Ann Austin

Here are the many things that PERSONALLY help my narcolepsy. I do not have significant cataplexy if any at all. I am medicated for both N and C.

My lifestyle choices are based on some core premises:


Premise Number One: REM can be harnessed.

When diagnosed with N, my doctor told me that my #1 job would be to “train” REM. Since I don’t naturally have the ability to regulate REM, it is my priority to continually remind my brain and body when it’s appropriate to be in a REM state and when it’s not.

My doc explained it like this: If you have a party, there are usually a few friends that hang around until the very end of the party. In this example… REM = the “friends”. When you finally get the friends (REM) to leave, you MUST close the door and DO NOT let them back in. Because, if you let them back in, the friends (REM) will want to hang out with you all day. They will be lolling around on you couch, raiding your refrigerator, picking fights with each other, etc. It’s very hard to get them to leave if they know that your place has a loose hinge on a revolving door! Like your friends, you have to give REM clear signals, letting REM know the boundaries that you have established.

So, to that end, I am vigilant about “closing the door” on REM when it’s not time for REM to be active in my brain. I intentionally establish boundaries to keep from intruding inappropriately. And on most days, it works. Here a few things that I do to signal my brain that it’s time to be awake – the boundaries:

1. When the alarm goes off, I GET UP. No going back to sleep, no hitting the snooze button. My feet hit the floor and I DO NOT get back in bed. I don’t want REM to think its okay to sneak back in.

2. Go to the bathroom, take my daytime meds and immediately, go back and make the bed. This signals my brain that the bed is no longer looking like a place to sleep.

3. Drink 16 ounces of water to boost my metabolism and take shower.

4. Get dressed for the day. NO hanging around in PAJAMAS because my brain associates pajamas with sleep. I put on clothes that are part of my waking world.

5. Drink another 16 ounces of water and eat a light breakfast; get ready to go to work.

6. My office has a huge window. Telling my brain when it’s daytime is important. Get sunlight!

7. Do cardio workout. Tells my brain that this is an awake time… active time.

8. At night, turn the lights low… again telling my brain that’s its night and time to prepare for getting sleepy. (this is the hardest one for me).

9. Take night time meds, then take a warm bath. When I get out of the tub, my body temp will fall a bit, signaling my brain that it’s time for sleep.

10. Set the alarm for 7.5 hours and do a crossword puzzle. In about 30 minutes I’m very sleepy. So then, I get 7 hours. If I get more than 7, REM will hang around all day. This is SO IMPORTANT! (I learned that 7 hours is my magic number after keeping a three-week sleep/wake log).


Premise Number Two: My body does not like roller coasters.

So, narcolepsy makes my body want to ebb and flow through wakefulness and somnolence. It’s like a roller coaster. I don’t want my body/brain to get hooked on the “up and down” and the “ups and downs” exhaust me! So, I stay OFF the roller coaster and instead, create as even and easy of a ride as possible:

1. NO CAFFEINE. Uh?…You say!!! Yup…I’ve been totally decaffeinated for five years and it has made a huge difference. It makes me more sleepy to feel the constant up and down of the caffeine…the crash. I challenge you to try it… really!

2. ELIMINATE SUGAR. Sugar is just another cheap thrill ride on the energy roller coaster. Quick up and then crash. Nope…don’t want to feel that…don’t want to put my body and metabolism through that.

3. Eliminate foods with preservatives. They are hard to digest and they clog everything up. If a food has an ingredient on the box that I can’t pronounce, I don’t eat it. If a prepared food has more than five ingredients, I don’t buy it/eat it. It’s too hard for the body to figure all the digestion and that can make me more sleepy!

4. Eat organic or at least “God’s food” as much as possible. There is more energy in food that comes from the earth. Lot’s of veggies, fruit, nuts …and maybe an occasional candy bar (okay, I am human) LOL! (more on food choices later)

5. Drink water steadily throughout the day to keep my blood pressure stable and even.

6. No Tobacco. I don’t smoke and I stay out of smoky environments. Tobacco messes with the metabolism and disrupts the night time sleep cycle.

7. Alcohol. Another hard one for me. If I drink, I wait until after 8:00 p.m. It seems senseless to put alcohol on top of the daytime drugs trying to do the opposite. So, I wait until my day drugs are out of my system before drinking some wine.

8. Scary movies. I have only seen a few in my life. They are exhausting and I think they would make HH really ugly. I have HHs, but they aren’t filled with scary images. My brain doesn’t have that template ingrained.


Premise Number Three: A strong, happy body CREATES energy.

Muscles convert calories into energy. Period. So, I stay in shape. Note: In the first few years of diagnosis ( I was 38 years old) exercise seemed totally impossible. For goodness sakes, I was exhausted…how could I possible gin up enough energy to work out???!!! Crazy talk! And I have “fat” pictures to prove it. Now….

1. MOVE. I work out. I dance three or more times a week. Dancing brings me such joy and joy creates energy. I’d dance every minute of every day if I could!

2. Keep my muscles toned and working for me…constantly creating energy.

3. Only do exercise that brings me joy; don’t do anything that I don’t find fun and uplifting. Exercise should not be torture and it should not hurt.

4. Exercise when I know I’ll be at my sleepiest. I know that 1:00 p.m. and 3:30 p.m. are really tough times for me. So, I set an alarm reminder on my phone for those times. The reminder says: Do sit ups. Yep…I get on the floor, put on some jammin music and do 30 sit ups. For an almost 50-yearl old woman, my abs look pretty good!

4. Stay away from emotional vampires and anyone else that is a “downer”. I am selfish about my energy and save it for me and for those that I love.

5. Surround myself with happy, joyful people. They do the same things I do…that’s part of why they are filled with joy. Joyfulness is filled with energy.


Premise Number Four: God/the universe gave us what we need….honor it!

1. Honor the natural cycle of the day. Sleep when it’s dark and be awake when it’s light. (this is the hardest thing for me and I’m still working on it!)

2. Set an alarm for BEDTIME!

3. Eat God’s food. This pretty much means that I eat purely…avoid processed “fake” food”. I don’t always get organic, but I don’t eat out of boxes.

4. Avoid foods that clog up the body: Fried, fatty, processed, aged (although I do love hard natural cheeses…but NO Velveeta, string cheese, no American slices…). The big exception of me is wine. Its aged and its lovely in reasonable amounts. Maybe this goes with “God’s food” :) I don’t drink much and if I do, it’s in moderation and after 8:00 p.m.

5. Drink WATER…God/the universe gave it to us and it’s free. I can’t stress this enough. And darn the drugs…they dry our mouths, joints, teeth….So LOTS of water! I drink 48 – 56 ounces within the first two hours of waking. And I don’t feel the urge to go to the restroom until three ours later. That’s how dehydrating the drugs are. Fight it tooth and nail and water jug!

6. Start the day with protein and fruits or vegetables.

7. No simple carbs until after 7:00 p.m. (bread, pasta, etc.) They just make me too sleepy.

8. Nothing white…no white bread, white crackers, white rice, white sugar….it’s just processed to death. To death. To death. Get it?

9. Avoid other foods that I know are a problem. For me, it’s simple carbs, bananas, and sugary foods.


Premise Number Five: Honor my narcolepsy. I know my limits and honor them:

1. Don’t drive when I know I’m not safe.

2. Plan my car trips wisely. I can’t dive for more than 20-30 minutes at a time. So, I do my errands on the way home from work; choose to work out and dance in a location that is either near my office, my home or on the trek between.

3. Ask for help. If I don’t have healthy food in the house, I will eat junk. My Mom always wants to know how she can help. I’m fiercely independent…but have asked her to do my grocery shopping for me. It’s a win-win. She loves to grocery shop (go figure) it’s a tangible way that she can help and support me… In return, I love and appreciate her, and have healthy, energizing food available.

4. No meetings in fluorescent lighted rooms. My boss is WONDERFUL about this. She plans meetings in rooms that have big windows. I’m blessed.

5. If a meeting will be long or if it’s “death by PowerPoint”, I take something to do with my hands or I stand up. I have even knitted during meetings. It’s interesting how doing something with my hands seems to increase my cognitive abilities. Someone with a neuro background can chime in on that one.

6. Take meds on time and as prescribed.

7. Sleep no more than seven hours a night. For me that’s the magic number. If I sleep longer, I’m a mess of REM all day. See the opening statement about setting up REM boundaries.

Okay…I think that’s pretty much it. And yes, it’s allot and it requires discipline…but, the pay off is WELL WORTH IT….I’M WORTH IT AND YOU ARE WORTH IT!

SLEEP WELL, BE WELL, LIVE WELL!!

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Wow, this post gave me chills. I've just dedicated the past few months to refining a morning routine with narcolepsy in mind, and it has had a huge impact on my wellness. The thing is, I'd tried to create a morning routine many times before, and it failed because I wasn't considering the true “Why” behind it. For the average person, the purpose of a morning routine is to have an efficient, stress-free morning. For a narcoleptic, a morning routine is about winning a battle. One of the hugest struggles for me has always been getting out of bed before I fall back into “the deep”. I remember when I was younger, my mom would come in the bedroom to find me out cold, in spite of multiple screaming alarm clocks. She would flick on the lights and physically hold me up in a sitting position, and while I was aware of her presence and the room around me, I was also simultaneously dreaming, my body crushed by massive, invisible weights. Every morning was an agonizing experience.

Ann's emphasis on closing the door to REM is important, because it focuses on removing sleep triggers from your morning routine, and finding shortcuts to wakefulness. What my mom and I went through each day would later be addressed with a diagnosis and meds, but I didn't really approach my mornings with reverence until late last year. My husband laughed at first as I ceremoniously set out water and meds next to the bed each night, prepared my clothes for the next day, became completely obsessed with the bed being made immediately after we woke, and banned computers, phones and television from the bedroom. Waking up has always been a simple undertaking for him, and he couldn't fathom why it was so crucial for me to prepare for the morning as if it were a battle to be won. But later he saw how much my routine loosened REM's grip on my body and mind – and when I didn't take these precautions, he could see how hard it was for me to transition into wakefulness.

Try just one or two of Ann's tips from Premise Number One. Make it a goal to spend thirty days with the following in mind: if you accomplish only one thing each day, let it be placing your meds and water by the bed, or pressing your feet to the floor and refusing to let them leave until you're out of the bedroom each morning. Get creative and find some unconventional ways of waking up each day. My friend once loaned me his sunrise alarm clock and it was awesome (it slowly fills the room with light each morning, making it easier to get up in a dark room/ during winter time). One year the only thing that got me up was placing a notebook next to my bed, and writing myself out of sleep for three pages. I even trained my cat to give me a fuzzy punch in the face if I sleep too long (she expects to be fed on a very particular schedule!) Your routine might stay the same forever, or it might evolve and require regular tune-ups. The key is to approach your morning routine as an important ritual.

Thank you so much for sharing this post!

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Great advice! So glad you found the magic "sleep number!" You don't have to nap during the day? I guess that means your meds are working appropriately. I, too, drink water constantly -- and, yes, the meds do make your mouth extremely dry all day long. I have also found that doing something with my hands, (even though I have pretty bad carpal tunnel in both) helps me stay awake. I crochet. I must admit, however, that I have fallen asleep sitting up while crocheting. Most of the time, I get the warning that I'm too tired to continue. I like the part where you mention "honoring" your narcolepsy. This is such an important part of accepting the illness and "knowing" whether you are lucid or not. (and, how much time you have left before your next attack)

You have prescribed a list of useful guidelines for everyone suffering with this illness. Thank you for sharing and caring!