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LIVING the Life You Get-narcolepsy

 

I developed excessive daytime sleepiness and hypersomnia in 1970, at the age of 12.  Research into the dynamics of sleep and what constituted abnormal sleep had begun only a few years earlier.  The field of “Sleep Medicine” was not even in practice.  Because Narcolepsy symptoms can be subtle, they are frequently imperceptible to outside observers.  The Diagnosis was only made in the most severe cases and in those where cataplexy had been observed.  Prior to the early research and the development of the MSLT, there was no scientific “evidence” to support a Narcolepsy diagnosis.

In addition to the EDS that others could not perceive, I developed other difficulties for which I had no explanation.  My grades in school deteriorated over the next few years until I was failing every class (even the subjects I previously excelled in).  I would forgo activities I once enjoyed, in favor of sleep.  The unrelenting exhaustion never let up and the effort of developing relationships was beyond my capacity.  By High School I had stopped going to school and was on the fast track to dropping out.  Feeling defeated, I began using alcohol and my mothers prescription drugs…I had nothing better to do.  One day I took my brothers ADD medication called Ritalin.  Ritalin calmed him down, so I assumed I would sleep as I always did.

Twenty minutes later, To my surprise and delight, and for the first time in years, I actually felt alert.  I felt refreshed, clear headed, and dare I say it…MOTIVATED.  That morning I paid uncharacteristic attention to my personal appearance and actually went to school.  Miraculously, my ability to study, learn, and focus was returned to me.  Once again my scholastic success became easy to me.  My parents and student counselors were delighted that I had turned my life around, and I graduated valedictorian, at the top of my class.  Few people knew that I was using stimulants, and those that did, were not aware I was taking them as often as I was.  I felt like a fraud because my authority figures believed I had turned my grades around by my own will and effort.  Still, I was thankful I was doing well in school again, even if it was the drug that deserved the credit.

After graduation I continued to use whatever stimulants I could find.  When I could no longer obtain Ritalin, I used "Bennie's" (street amphetamine), or cocaine (minimally effective), and eventually methamphetamine (because it was readily available).  Periodically I would feel guilty over the fact that I was a drug user.  I worried about addiction, and I was all too aware that I was breaking the law.  I had plans and dreams for my future, and being a drug addict didn’t fit into them.  Neither did the thought of being arrested, booked, court, or jail time.  During these times of self reflection, I would “forget” the reasons I started using stimulants in the first place.  I would give myself a lot of positive self talk about quitting my drug use and often, that is exactly what I would do.  Each time I would return to “normal”, and all of the problems with sleepiness and consequences of EDS returned in short order.  I would get depressed and I missed being the intelligent, self motivated, independent, bound for success person who other people thought me to be.  People that noticed the sudden change in me would be concerned.  They wanted me to stay that person they knew.  Ironically, it was always when I was “sober” that some people thought I was on drugs.

Sooner or later I always returned to using stimulants.  I may have been breaking the law, but I knew that this drug allowed me to accomplish things I would never have been able to do otherwise.  Life continued on this path for the next 15 years.  I married and had two children.  I obtained a well paying job, and at the age of 25, opened my own business.  My husband and I owned two homes, and had several other financial investments.  I bought the drugs I needed from my husband, so I never had to involve myself in the drug culture.  Though my husband was often emotionally abusive, my lack of self esteem (which I attribute to psychological effect of Narcolepsy symptoms) enabled me to cope with, and accept the abuse.

Eventually life in my marriage became increasingly difficult.  I was seeing a therapist about the marriage issues, and had told her about my drug use.  She suggested the possibility of Narcolepsy, which was the first time in 20 years, (since my symptoms began) that a medical professional had done anything besides dismiss my complaints.  The year was 1990, and she indicated the cost for the MSLT at that time was $20,000.  My husband was complaining about the fees for the therapist, so spending that kind of money was out of the question.  The therapy accomplished one thing-it gave me the courage to divorce my husband.

My husband was angry.  Very angry.  I was as unprepared for divorce as a person can be.  I realized that all the marital debts were in my name, and all the marital assets were in his name.  Each month, he collected rental income on properties we owned, and I received the harassment from bill collectors.  At the same time I was now being harassed by the international Motorcycle gang, which he was a member.  My husband is very well known in the community, and very well liked, which caused social difficulties for me, by those who wished to get his favor.  In the adversarial divorce court system, the drug use that had helped me in earlier times, was now my husbands most effective and damaging weapon.

The divorce took on a life of it's own, and lasted longer than the marriage.  Long story short, my drug use cost me my children, my reputation, and prejudiced the courts decision in the financial settlement.  The debts that were in my name, were my award.  My husband made it as difficult as possible for me to see my children, made me out to be the stereotypical "tweeter", and told them (and everyone else) that I received $200,000 in the settlement and spent it on drugs.

During this time I had moved 500 miles away, and was living with my mother.  I took jobs serving or bar-tending, as these jobs had no drug testing.  I made a modest living, and spent my savings on travel expenses for court hearings and visiting with the children.  A few times I stopped using stimulants, but the hypersomnia returned.  Without stimulants I could not make the 500 mile drive to my hometown.  I made new friends that didn't know who my husband was.  Some of these new friends also used illicit drugs.  As long as they were a functional part in society, I did not judge.  They could be self medicating for the same reasons I was.

It was my friendship with some of these people that became my downfall.  The drug culture is riddled with people that have run ins with Law Enforcement.  When this happens, a type of "pyramid scheme" in sues, in which the criminally charged are given the option to "get out of jail free" in exchange for arranging the arrest of three people (of their choice) for drug related charges.  These people become "confidential informants", and the next time they commit a crime, the cycle continues.  My arrest was arranged in 1998 and 2001, and after declining to arrange any one Else's arrest, I was sentenced to three years in the State Penitentiary.

I stopped using stimulants in prison, grateful to be able to sleep as much as I did.  Prison is everything they say it is...and more.  I was paroled and regularly drug tested.  Clean and sober, I slept 12-16 hours each day, and still I was exhausted.  My youngest son (now 25) moved out of his fathers, and to my area to live with me.  He had been using methamphetamine, and wanted to stop.  Most people stopping methamphetamine experience hypersomnia, so when he went to bed and did not get up, I was not concerned.  One month passed, then two, then three, and after the fourth month I realized with dawning horror, that I wasn't alone in my difficulties with excessive daytime sleepiness.

He told me he wanted to get up, but he just couldn't manage to do it.  I told him of my long history (35 years now) dealing with the same problem.  I said "look around you, do you see anyone else (besides me) sleeping like this?".  I promised him that I would find out what the problem was with us.  I went to the parole doctors, who prescribed antidepressants.  When those were not helpful, they gave me different kinds of the same.  More than a year had gone by, and none of the medications helped at all.  In frustration, I searched the Internet, and found Narcolepsy.  My son and I underwent MSLT's and were diagnosed.

I'd like to say we lived happily ever after, but as anyone with Narcolepsy knows, diagnosis is just the first step in a very long, lonely, exhaustive road.



        

miles2gob4isleep miles2gob4isleep 56-60, F 5 Responses Jul 7, 2009

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Wow I can't even imagine what it must have been like to suffer like you did. I am very blessed to have been diagnosed at an early age of 15 after suffering only 5 years without medication. You must be such a strong person after all that you've gone through. God bless and stay strong

May i ask what the procedure is for getting diagnosed?

I literally cried when I read this. I feel so terrible for you. I also have the evil Narcolepsy and I can't even imagine what you must have felt on that entire long road. How horrid it must have been! Luckily, I was diagnosed early at 22, the day before my 23rd birthday. I am so sorry that you had to go through that for so long. My heart hurt and my eyes welled with tears reading your experience with this. Unbelievable! 20,000 at the beginning? Wow... Honestly, if I had to go through it the way you did, I may have committed suicide. It's hard enough when people don't believe you about the way you feel, can't understand, label you a drug user... To have gone through that when there was little information available to you, to go to jail for what others were allowed to take for another medical condition, it is infuriating! However, I'm glad you were able to help you son with this. I hope he knows what you've done for him.

there,s a book in you for sure, i you can stay awake to write it. narcolepsy is hard but you can live with it. look after yourselves, and keep each other motivated.xxx

I JUST READ YOUR STORY AND BLESS YOUR HEART. YOU HAVE BEEN DOWN A TOUGH ROAD. HOPE YOU AND YOUR SON ARE DOING WELL. KEEP YOUR HEAD UP AND BE STRONG. YOU ARE RIGHT IT IS A LONG ROAD TO GO DOWN.