Question: I have suffered from narcolepsy for as many years as I can remember. However I didn’t know until a year ago last May that it was narcolepsy; that’s when I was diagnosed. I am 48 years old.
Since being diagnosed a little more than a year ago I have gone completely down hill. I am also bipolar and the struggles I have had with narcolepsy has put me into a severe depression. I had to go out on disability in early March and have been told by my employer that there is a good chance my job won’t be there if and when I am better to come back to work because I was a new employee not protected by FMLA.So I have lost my dream job, my house is falling apart because I’m either too tired and having sleep attacks all day or too depressed to even get up and get things done. The worst part is my memory. I don’t have one anymore. There isn’t anything that I can retain for more than a few minutes at a time. I have started dinner, went to get something out of another room and completely forgotten that dinner was cooking, when I smelled or heard it burning I would then remember.I was attending college, had accommodations under Section 504 of the Americans with Disabilities Act and was just dismissed because I failed 3 terms. This was directly related to the bipolar and narcolepsy. Mostly the narcolepsy because I couldn’t stay awake to do the work and if I did do some reading assignments I couldn’t retain a thing I had read, therefore I couldn’t get my work handed in on time.My first term of school I made the President’s and Dean’s list with a GPA of 4.0. I then flunked out a year later.The other worst part is the lethargic feeling I am constantly experiencing. Out of 7 days in the week I might have a couple decent, productive days. The problem is that I have so much to do on my good days because there were so many bad days things piled up. So I bust my butt and try and catch up and then am exhausted for another 2 or 3 days.There isn’t a med they have found yet that will help me. I have been on Nuvigil, Ritalin, Ritalin LA and am currently taking a high dosage of Dextroamphetamine, and I am lucky to get a few good hours each day from it.The biggest problem with my situation is that because the medications for Narcolepsy are stimulant medications they counteract the bipolar. Meaning, stimulants can and do put me into a manic or hypomanic phase. So I am manic, wired, head spinning with thoughts and things that I could or should be doing, extra pent up energy but either too lethargic to do anything, or I am up for 2, 3, 4, and on a few occasions 7 days straight. The only sleep I do get are from the sleep attacks.Now you may wonder why I don’t just go to
bed. I try. I lay there for hours dozing, in and out of hallucinations, sleep attacks, sleep paralysis, but can’t fully sleep because of the mania.The most absolute worst part that narcolepsy has ruined in my life is that I also have a 14 year old special needs son that is also diagnosed with bipolar, but he got a double whammy and is also Autistic, he has Asperger Syndrome. I can’t take care of him. He takes medications 3 times a day and I forget to get them for him. I have the alarm set on my cell when he is supposed to take them. But if I happen to be in another room or busy right at that second and turn the alarm off I forget within a few minutes that it was time for his meds.I can’t cook, do laundry, or even socialize or hang out with him because I am either too tired, sleeping, going in and out, or too busy catching up on all my mommy duties around the house that I don’t have time for him.Not only is narcolepsy a joke disorder it’s a backwards disorder. All day we suffer from EDS, but then when it’s time to go to bed we are wide awake. Many people with narcolepsy also suffer from insomnia. It’s a vicious cycle. You are at the mercy of the disorder.Then try and find a doctor that really knows ALL about narcolepsy. I haven’t yet. I have been to 3 sleep specialist and each one has said something different. Well, almost, 2 of the 3 have said to me, “It’s narcolepsy, it is what it is, you just have to live with it.” The third specialist I saw told me that my narcolepsy is untreatable because of the bipolar, told me that my case wasn’t in the text books and he didn’t know how to treat me. He asked if I had ever thought about filing for social security disability because he doesn’t think I will ever work again. So, that’s where I am at. In a nutshell I have no job when I am ready, I am on short term disability, getting 60% of my base pay, meaning I am trying to survive on $900 a month, waiting to see if I get approved for SSDI, am loosing my son because I can’t take care of him, have lost half my family and friends due to it, I am miserable everyday and had even contemplated suicide last night.It’s a nasty thing to have!KimmeryKevin: Hey Kimmery, thanks so much for sharing your story. I hope others are able to benefit from your insights and contribute to your own with their thoughts. I sympathize with your circumstances and experiences, but I have faith that you will prove that third doctor wrong and find a way to be productive and live a fulfilled life. Keep educating yourself and I believe you’ll certainly stand a good shot.Speaking of education, have you read our interview with Dr. Emmanuel Mignot, the discoverer of the narcolepsy gene?All the best,Kevin