Living with Narcolepsy

I am a 24 year old who has been suffering from narcolepsy for 13 years. I was considered a bright child in elementary school, taking advanced classes and earning nearly perfect grades without effort. On the last day of 7th grade, I fell asleep in geography class. I remember it very clearly. It was bizarre and completely unexpected….. and it continued to happen.

Through the next 2-3 years of high school, I became more & more tired. My grades started falling. My social life failed miserably. I slept in every class, every day… and none of my teachers ever said one word to me in the 5 years I suffered during high school. I was commonly considered to be a drug addict in high school, even though I had never even had a sip of alcohol.

My parents never even noticed that I was falling asleep all the time. When i slept in until 1 or 2 in the afternoon on Sundays, I was ridiculed or called lazy. I was never able to stay awake to do my homework. I couldn’t focus long enough to clean my bedroom or clean out my car or wash dished. My family came to regard me as a “problem child”. Thinking that there must be some sort of mental illness or drug addiction causing my perceived laziness & withdrawal, they took me to a pssychiatrist.

I was mis-diagnosed with bi-polar disorder, mainly because my sleepiness made me extremely irritable when I was tired and being nagged or lectured about something that I hadn’t done. The doctors also took into consideration that my mother has bipolar disorder and chose that label for my symptoms. I was started on medications and ran through the laundry list of psychiatric drugs, including: Depakote. Lithium, Tegretol, Lamictal, Seroquel, Xyprexa, Risperdol, Haldol….. the antipsychotics came into play when i started having sleep paralysis and hallucinations at age 16. My diagnosis then evolved into schizoaffective disorder. I was loaded on with typical and atypical antipsychotics, which had the effect of making me even more tired that I already was and made me seem to be non-compliant. I would never cooperate with going to get the bloos draws for the medication levels because I couldn’t wake up early enough in the morning and stay awake to make it to the lab & have the blood drawn.

My parents and my psychiatrists thought that I was basically schizophrenic and therefore unredeemable. I had a wonderful boyfriend for several years, but we eventually broke up after the spillover from the drama at home made me seem completely undesirable to his upper-crust family. I went to college after high school, but dropped out with failing grades halfway through the first semester because I just couldn’t do it.

I moved out of my parents house and in with some friends and stopped taking the psychiatric medications because I knew that I was NOT crazy. I went to a sleep doctor for the first time in 2004, at the suggestion of my PCP. I underwent a PSG/MSLT, which overwhemingly showed that I had a severe case of narcolepsy….. however I was nor able to receive follow up care and treatment because my parents removed me from their insurance. They went to the appointment themselves, learned my diagnosis and kept it to themselves.

During the next 5 years, I struggled to keep it together. I had 2 children, and suffered vicious bouts of what was called post partum depression but that I now know were stress related increases in the intensity of my narcolepsy. For months after my children were born, I couldn’t do anything, but sleep. My own family called Children and Youth Services on me multiple times (I was cleared immediately every time).

My oldest child, especially represented a real challenge to me. He was a bit premature and had eating and sleeping difficulties that required him to be fed every two hours. He never slept. Ever. I nearly committed suicide when he was four months old becuase I had no quality of life. I was having severe, sudden sleep attacks 10 times a day, sometimes 15 times that involved significant cataplexy. I eventually had to move in with my parents because my significant other wasn’t able to provide enough support for me.

My parents helped to me to raise my oldest, at a significant cost to my self esteem and outlook for the future.

Fast Forward to a Few Weeks ago…. I feel like I am in hell. The sleep paralysis and hallucinations are recurring multiple times per night… each time I try to fall asleep from the last attack……I’m laid off from work because of poor job performance….. I can’t stay awake long enough in the day time to spend any time with my children. I’ve gained 40 pounds. I’m drinking at least 12 cans of soda a day, if not more, in an attempt remain alert for just a little while….. so finally something divine intercedes and the sleep doctor’s office manager calls me out of the blue….. they were purging their old files and wanted to know if I had a new neurologist, because they were willing to send the initial PSG/MSLT test results to them….. after some confusion, the secetary read me the diagnosis and recommendations from that first evaluation…… hearing that I had narcolepsy, as the neurologist described, one of the most severe cases he had ever seen put me into tears. It means that i am not crazy. There is a name for what is wrong with me and a way to fix it.

I had a repeat PSG/MSLT test last week. The PA that was in the office at the time when I was completing the test said that in 15 years he has never seen such a severe case of EDS… I had to have someone in the room with me to make sure that I was able to stay awake between the naps. They didn’t want me to drive home from the sleep lab.

So, today is Monday. I had my follow up last Friday and I woke up this morning and played with my kids. I’ve been awake for 5 1/2 hours….. I haven’t stayed awake for that long in ten years. I’m in tears right now because I have never in my life felt this good.