Narcolepsy

[livingwith]

I am a senior in High School, I am 17 years old, and I have been living with narcolepsy for about 5 years now.
At first when I was about 9 or 10 I was diagnosed with diabetes, I was on a very strict diet and was still sleeping constantly! I couldn’t go out with friends because I could never stay awake, and wasn’t any fun. So I lived eating terrible food for a pre-teen to have to eat and was missing out on life because I was to busy sleeping. I was diagnosed with diabetes after, what seeme...Read the full article

[Phoenix1106]

I am 44. I have been living with varying degrees of narcolepsy, combined with insomnia, apnea and a host of really frustrating relative issues. I have lost jobs, relationships, and hours and hours of much needed rest because of this beast. I've even fallen asleep on my motorcycle!...in traffic! So I can understand and appreciate your frustration with it. I have been treated for apnea with a CPAP machine, combined with restoril (among other attempts at the right remedy). I was also (as you were/are) on Provigil. At the time my insurance was refusing to contribute for the Provigil, and the cost was so prohibitive that I had to give it up. As it turns out I am going back to the Doctor today to see if we can gain a little control over it. I'm hoping that we'll be able to achieve a little success. The value of a full night's sleep is immeasurable right now. I haven't slept through a single night in over 12 years. I'm glad there are folks like yourself finding help. It gives me some hope. Best success to you.

Scott

[sleepy beauty]

I just wanted to say that you have the right attitude. I get a little frustrated at some of these people who have the attitude 'poor me, poor me. I have Narcolepsy and cannot live my life anymore'. That is total BS. I have been diagnosed with a severe case of Narcolepsy and Cataplexy for 21 years now. And I have a very active life. Do not let these people tell you that you cannot live on your own. They are full of CRAP!! I was diagnosed at age 13, after 2 extremely long years of testing. They told me the same crap, that I could never lead a normal life. Well, I graduated from high school in the top 5% of my class, graduated community college in 2 years with honors, and graduated from Florida State University with a BS degree in the next 2 years with honors also. I got a scholarship from the Lions Club in my senior year of high school and went to live with a host family in Paris, France and ended up traveling all over France that summer. I have been working with the same company now for 12 years and have moved to 5 different locations to manage store for them. So, what I am trying to tell you is that you need to control your Narcolepsy/Cataplexy, don't let it control you. I'm not going to say it is going to be an easy road, but you have to make it worth the travel. And no matter how much meds you are on, you will never lead a so-called 'normal' life. But you have to make the best of the cards dealt to you. Don't be afraid to strive for more, but in the same aspect, know when you have been defeated and bow out gracefully. So, live your life!!! And in my experience, it does get better. I used to have horrible horrible night terrors and suffered from extreme Cataplexy attacks, I even remember sleeping with the lights on everynight when I was a teenager. I was on Tofranil for this, but I learned to live with these things and elected to stop taking this drug.That was about 10 years ago. I still have the occasional night terror that has me turning on every light in the house and checking under every bed and inside every closet(one of my repeated nightmares was someone breaking into my home and stabbing me to death.) But I learned that I could control the outcome of my dreams. I still take Ritalin LA everyday for my Narcolepsy though. I wouldn't be able to function without it. I tried Provigil when it first came out, but it did nothing for me but cause terrible headaches. Just stay positive and live your life. Don't live a life of 'would have, could haves'. You have to always remember that there are a lot of people in this world that are far worse off than you. Best of Luck in the future.

[4grandmom]

Your attitude about this will help you so much. You can have a normal life...if there is anything normal about life...lol. My grandmother will be 76 this summer and she was diagnosed with narcolepsy in her early 20's. She was married, raised 5 children and 4 grandchildren, worked rotating and overnight shifts for many years and maintained a healthy and happy life. She is the strongest, most independent woman I will ever know with a great love for life. Stay positive and you can LIVE with this...you will be fine. Stay on top of any research about the disease. Right now, my grandmother is experiencing changes that are causing us major concern; and we don't know what is causing them. She was diagnosed with Alzheimer's disease a couple of years ago only for us to find out that she may not have it at all. We now wonder if what she is experiencing could be due to having narcolepsy for so long - there is not enough research to help us determine this right now. Hopefully we will get some answsers. Take care, be encouraged and stay EDUCATED about what you are going through! God Bless

[ddibon]

You've stumbled upon the secret. Perhaps some of us sharing can ease your path. The bottom line is to achieve periods of stable and long stability and predictability, and then not become too down trodden when periodic worsening occurs.

I got narcolepsy when I was thirteen. A lot of people in my family had it. I thought they were the most screwed up of all of us. I didn't like them. Regardless, my Mom began giving me amphetamine once a day in the mornings, and it helped.

In college, I didn't want to go home to get medicine so tried a time without it (a year). Cataplexy, embarrassing social moments, inability to focus during class and study led me to seek treatment. This is not good, but is true. It actually was cheaper for me to purchase street amphetamine than to go about the proper medical path. For the next five years I took about ten milligrams of meth-amphetamine every morning except weekends in a glass of orange juice. Of course, caffiene, cigarettes and stimulation all helped. In fact, I didn't know the difference between stimulation and alertness until years later.

Somehow I made it through college, and then medical school and then residency. During my medical residency I decided I should get a proper diagnosis so went to see a University physician. I was told I was an amphetamine addict, and sent to rehab for nine months. Believe it or not, I was relieved with this diagnosis. I hated narcolepsy and cataplexy and had seen how one's life could simply tank. Being diagnosed with an addiction and emotional problems was actually liberating. At least people existed who had these problems but lived a life of contribution and joy. I embraced recovery.

Damn, it was hard. I figured my brain had been damaged by amphetamines. I finally found that vigorous exercise, near continuous motion while awake, stimulating topics, an intense vision of what I was specifically living towards, and at times sheer force permitted me to function almost normally-I thought.

Actually, I got on "rails". I lost contact with the impact my behaviors had on others. I talked at people, not with them. I remained intense and self stimulated. I became rageful. I had complete cataplexy and shattered my elbow. I got formally diagnosed with narcolepsy, but had lost a marriage, been mislabeled as a physician drug addict, cultivated an odd personality or either being eccentric or intense, etc.

I started provigil. I discovered the difference between being alert and being stimulated. I took up writing, quilting, gardening, fishing and even watching movies. I became capable of partnering with other people. But somehow things progressed.

Over the years I have now become at age fifty medically disabled with narcolepsy and cataplexy. I am on max dose xyrem, provigil, adderal, Prozac, etc. I continuously seek individual counseling. I am determined to heal without getting on rails, that is, self stimulating with intensity, anger, risk behaviors like fast driving or deep diving, narcissistic focusing, etc. I want to know what it feels like to partner, for real, with another person. And I am slowly getting there.

My advice from the past thirty five years or more:
Never give up.
Seek early, aggressive and knowledgeable narcolepsy management with a sleep specialist whose primary certification is either psychiatry or neurology.
Be consistent with your medications and sleep wake regimen.
Enlist the support of friends, neighbors, family and work.
Give your professors or teachers a note from your doctor.
Always attend personal counseling, the best impact is doing it when you don't feel like you need it.
MOST IMPORTANT, NO MATTER WHAT, MAINTAIN A HIGH SENSE OF INTEREST, PASSION AND VIVID IMAGERY OF THE LIFE YOU DESIRE IN EXTREME DETAIL; AND THEN LIVE INTO THIS VISION. IF YOUR VISION IS OF SERVICE TO GOD AND OTHER PEOPLE, AND YOU LOVE IT, IT'S FUN, IT'S REWARDING AND YOU HAVE A PURPOSE THEN THE POWER OF LIVING INTO THIS LIFE VISION ACTUALLY CAN BEGIN TO OVERCOME THE NARCOLEPSY MORE THAN THE MEDICATIONS, AND ALL WITH A QUIET DISCERNMENT, NOT WHILE BEING ON RAILS.

Little to no research in neuroplasticity is available with respect to narcolepsy. Yet, I am certain it holds the promise for the best outcomes. Medications can keep us in a therapeutic window, yes; but only the laying down of new neural tissue can widen our windows (ie, the measure of how tolerable our illness symptoms to abuse like poor compliance is manifest). In other words, it is possible to behave one's way into a new state of being, but not think ones way into such a state. Yet without the thinking, the vision formation, there is nothing to behave towards. Once that is done, it's a matter of sheer desire, force and commitment and never giving up to act one's way into a wider window.

I am able now to actually choose a new life, one I want instead of one I sought because of it's side effects upon my narcolepsy. I don't know what that will be yet, as I never imagined at fifty years old I would have to rewrite the trajectory of my life. You see, there is still the wreckage of the illness: I sustained head trauma, developed seizures, lost my career and my family and also developed blood clots so now have to remain anticoagulated for life. I do know this: even if one can visit the justifiable victim state, then all is lost. At all costs, it is important to not live life personally, not permit even the smallest victim state or blaming condition to arrive and to always desire manifesting your greatest and grandest as god would have you.