Narcolepsy…Been There, Done That…DONE WITH IT

Narcolepsy…Been There, Done That…DONE WITH IT

About the Madcap Miss (a.k.a. Gina Dennis):

  • Gina was diagnosed with narcolepsy in 2004 at age 32
  • When medication quit working she changed her diet (July 2011) to help mitigate symptoms
  • Gina’s mom and son have narcolepsy and started the diet in December 2011 and July 2012 respectively
  • With diet Gina, her mom, and her son have a 70-90% REDUCTION in narcolepsy symptoms

I refer to my life as a madcap missadventure.  My life’s adventures start out heading in one direction and usually end up in a totally different spot.  Sometimes I’m pleasantly surprised at how madcap and fun the adventure turned out to be and sometimes I could do without all the madcapery and I wish for a bit of “normal.”  I’ve taught myself to always find something about the trip to laugh about, whether the adventure was a tough drive along life’s lesson teaching road or just a jaunt around the corners in my brain or heart. EVERY time the missadventure taught me something about myself.

Narcolepsy, for me, has been the biggest madcap missadventure of all.  The missadventure began at age 5 as a young girl in Arizona who couldn’t quite wake up enough to dress herself so was more of a rag doll than she was a kindergartener.

If you continue down the road toward my teen years you’ll see that I never really fit in and I struggled to appear normal.  Where sleeping through class was my norm and my self-esteem and confidence were non-existent.  My core belief was that I was just lazy and stupid.

Come with me down the hill and pick up speed so you can see me move into young adulthood where I married and had my only son.  You’ll see me struggle as a mother that just couldn’t wake up (mentally or physically) long enough to enjoy and later recall her son’s first word and first steps.  Come on….faster, faster, and around dangerously tight corners…you’ll see that my marriage failed and I took total blame for its lack of success.

Now it’s dark and I’m driving without the headlights on…if you squint you might see me as a depressed divorcee that just couldn’t seem to kick the depression.  Turn on the headlights but “Crap on a Cracker!” only one headlight was working….this is the portion of the adventure that shows me taking antidepressants that were only numbing me further.  The antidepressants sometimes worked, usually just enough for me to think that they would kick in fully “anytime now.”  They never did.  It was at this point that a very big truck, with both of its headlights working, started following me and as it got closer it began to illuminate the road ahead.  I married the truck and ended up with a vehicle that at least had both headlights to help me illuminate this madcap road I was on.  The crazy corners straightened out a bit and I had time to look around me a little, enjoying the scenery between naps.

Okay, this road trip metaphor is getting a little outta hand, but you get the picture right?  After all, you’ve been down some variation of this road yourself.

It was just a few months after I married my “truck” that my mom told me she was diagnosed with sleep apnea and narcolepsy.  Her description of symptoms sounded very familiar so I went to my doc and ended up doing a daytime and nighttime sleep study.  What do you know?  I had narcolepsy.  Whoo hoo for me.  Well, not really.  I was given medication to treat it and at first it seemed like I’d found the answer to all my problems.  I began to come out of my cocoon and spread my wings.  My mom was also on medication and it worked for her at first but then got progressively less effective.  Several months into my treatment and I was experiencing something similar but I fought the knowledge because I just couldn’t see a better alternative and I sure as heck wasn’t going back to the dark and dangerous road that life was before diagnosis.

In late 2009 the road got really treacherous, and did it so fast I was blindsided by it.  Majorly freakin’ big pothole.  The kind that popped my tires and took away my ability to drive until repairs could be made…my son, now a teenager, was diagnosed with narcolepsy.  Then his dad, my ex-husband, was diagnosed 3 months later.  Sounds like an epidemic, doesn’t it?  Both of them began treatment with medication.  It’s at this point that I realized my son and ex could at some point begin to see less effectiveness with the medication, same as my mom and I did.  What were my family’s options?  I researched and searched, and researched some more…I couldn’t find any options that weren’t nightmarish to contemplate (uppers, downers, mega strong and addictive narcotics).  I was getting more and more depressed about the whole thing when I stumbled across a website that had a solution.  A solution that didn’t involve scary drugs.  A solution that was just too simple to believe.  It said a carbohydrate controlled and gluten-free diet could bring me symptom relief, could help me manage my symptoms and allow me to rejoin the land of the living.  What?  It couldn’t be that easy, it just couldn’t.  With a shoulder shrug, I asked myself “What could it hurt?”  After all, I’m a woman and I’ve done every other diet on the planet, it couldn’t hurt to try another one.  All I had to do was give the diet a test drive.

The mere fact that I’m writing this little bio should give you a clue about how that dietary test drive turned out.  I’m living a life WITHOUT the nightmare of narcolepsy.  LIVING instead of just surviving.  Narcolepsy NO LONGER CONTROLS ME!  This diet works!  There have been a few u-turns and changes in course, meaning that I have tweaked the diet and will continue to do so.  Aaaand, as with any road trip there are occasionally items of debris in the road, roadblocks, accidents, and general traffic-y mayhem, meaning that I still have narcolepsy symptoms that pop up, but for the most part the road is pretty scenic and without the old mayhem that narcolepsy once caused in my adventures.

In the title of this post I said “Narcolepsy…Been there, done that….DONE WITH IT.”  With myself, my mom, my son, and my ex-husband having narcolepsy I feel like the “Been there, done that” part is an understatement.  The “DONE WITH IT” part is the dietary symptom management that I get the privilege to experience daily.  My madcap adventure is now happening with the top down, eyes wide open, sun shining down, and I’m loving the trip.  My adventures still have curvy roads where I sometimes drive too fast but man, I really enjoy feeling the wind in my hair and the sunlight on my face.  New adventures waiting for me around the bend.

My son and mom are now along for the ride.  Why don’t you join me on this madcap, totally loving life, adventure?  Come on, all you gotta do is open the car door and go for a spin around the block with me.  Come on baby, just buckle up and read this website with an open mind and a spirit of adventure in your heart.

Are you ready?  Whoo hoo, let’s put the pedal to the metal and go for a ride!

Your Madcap Miss (a.k.a. Gina Dennis)

Let me be totally up front here…I AM NOT A DOCTOR, nor am I a nutritionist, I only have a tiny amount of formal training in such things as a Health Coach.  But I am a person with narcolepsy who uses dietary and lifestyle changes to mitigate my narcolepsy symptoms.  I’ve been experimenting with these changes since July 2011 and have successfully maintained a high level of narcolepsy symptom management since that date.  And so has my family with narcolepsy.   This website contains our personal stories, failures, and experiments.  In this website I will share with you the information that I have found most credible and some practical ideas for mitigating narcolepsy symptoms.  I beg you to check with your doctor before initiating any of the dietary changes I speak of, especially if you are taking any medications.

Madcap Disclaimer

    13 Responses to Narcolepsy…Been There, Done That…DONE WITH IT

    1. I’m very anxious to try diet to help my Narcolepsy but I’m confused on which diet to try? Palio or Keto or a combination of both😟 Any help would be so appreciated. Thanks so much

      • Thanks for your comment Marlo!

        It’s confusing at first and I will eventually have a diet plan up on the website to make it easier. In the meantime, I’d start with this link: https://www.dietdoctor.com/ In the beginning, don’t worry about tracking and getting your carbs as low as this website says. Just start out by eating from their list of foods and being mindful when you eat something not on their list. Then in about a month, crank it down to the low carb level they suggest on the site and begin tracking so you know what your limits are.

        Hope this helps a bit.

    2. I am on day 15 of this diet. I can only add fats slowly so I am only in mild to moderate ketosis. Still, I can’t believe how much better I feel. I feel alive, really truly alive, for a few hours every day. I don’t know whether I ever have felt this way before. It will take me awhile to get to deep ketosis but knowing how much better I feel in mild to moderate ketosis, I have the desire to get there. Thank you, Gina!

      • I am so excited for your Martha! Your journey is in its early stages but isn’t it wonderful when the view is so fresh and vibrant already?

        When I hear your updates it just makes me more driven to ensure this site shows others with Narcolepsy a path to follow until they can navigate it on their own. A path full of energy and wakefulness. A path toward greater control over something they had no control over previously.

        You, my dear, are a Super Star. You exhibit such strength and tenacity in the midst of this disease. Keep up the amazing good work. I’m so proud of you!

        • Thank you, Gina. I am now on nearly 3 months in on this diet and still seeing improvements in wakefulness. I am experiencing joy for the first time in years. My loved ones have noticed improvements, too. I think my co-morbid conditions will mean that I will improve slowly. Still, I am improving. Bless you!

    3. Gina, I’ve been narcoleptic since birth and discovered low carb no gluten in 2011 in my 4th decade. Med free since then. Living a normal awake and pain free. Happy to be me. Finally. Love your post.

    4. gina that is brill. i want to see the movie…. im just thinking the zombie institute thing was what put me onto the gluten free thing….
      It really shows our mental state when we follow advice from a little lady who dances on a treadmill… lol… God bless that little lady… and you…. thanks

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