This is another guest post by my daughter, Deanna Lynne. It is her perspective of events covered in my last post “Withdrawal”.
It’s 10pm and I have just gotten into bed for a good night’s sleep, or so I thought.
I have Narcolepsy. By definition Narcolepsy is, “A sleep disorder involving the brain that affects 1 in every 2000 Americans. Narcolepsy occurs when the brain cannot normally regulate cycles of sleep and wake. This can cause daytime excessive daytime sleepiness that result in episodes of falling asleep suddenly.”
Narcolepsy is a little different for me. Left unmedicated, I’m nocturnal. My pattern was generally to be awake from 10 pm until 5am, then fall asleep at 5am, and then wake up at 7am. Sometimes I nap during the day, and sometimes I am awake for 48 hours straight.
I recall noticing my sleep issues at age 5 or 6. But as a child I had tons of energy and didn’t think about it. All a child wants is to be happy, loved, and play as much as she can.
I remember going into my parents’ room on some nights and saying “I can’t sleep”. They would tell me things like “Just close your eyes and think happy thoughts.” I went back to my bed and tried it but it just didn’t work for me.
So then I went to my big brother Eric and asked him if he could help me fall asleep. He would take out his sleeping bag and carefully wrap me up in it with my teddy bear Lovey Dove. I lay there on the floor of his room for what seemed like forever to me because I was so young. I said, “Eric, I still can’t sleep.” He whispered softly, “Shh, just close your eyes and say to yourself all you want to do is sleep.” So I did as he asked. And eventually I fell asleep.
I made many trips to my brother’s room in the middle of the night when I was young.
As I got older, the sleeping issues got worse. I remember being in 7th grade English class, falling asleep and falling right off my seat. That only happened once. After that, sleeping in class didn’t occur again until high school. I fell asleep in English class 3 times. It wouldn’t be for the whole hour – just a couple of minutes. Good thing it happened in English class because I got good marks in English and I could afford to fall asleep.
My teacher joked with me and said, “You must be out partying a lot to sleep in class.” I answered “No I’ve just been having trouble sleeping that’s all.” It doesn’t surprise me that my teachers didn’t talk to my parents about it because falling asleep in class rarely occurred. And I was not the only high school student falling asleep in class.
I used the weekends to catch up on my sleep. I would sleep pretty much all day. In my opinion I don’t think I missed much in my teenage years. I was a terrible teenage girl. I drove my father and mother up the wall.
Sleep issues often go undiagnosed in children, especially teens, because of the stereotypes – teens are growing and they sleep a lot because of it, but it’s often chalked up to laziness or too much partying. In my own case, there was also the issue of my blood pressure. My parents were preoccupied with that particular problem because it has caused me to be hospitalized a few times and medicated since age eleven.
Things changed in my 20’s, when I was diagnosed with Dystonia. My doctor said I should have a sleep study. A sleep study is an interesting experience. You go to a sleep lab, where there are nice rooms all made up to look like a spa or hotel. A sleep technician wires up your head, and then you spend the evening doing what you’d normally do – watch TV, read, etc. Unfortunately for me, the cable was out on my night, so I just read a bit and then lights out.
The only unpleasant part of the study is getting the glue they use out of your hair when the study is over.
Of course I had trouble falling asleep, and when I finally did go to sleep machines measured my REM sleep. The results were typical of someone with Narcolepsy. Here is a description from the National Sleep Foundation.
“Sleep happens in cycles. When we fall asleep, we initially enter a light stage of sleep and then progress into increasingly deeper stages. Both light and deep sleep stages are called non-REM (rapid eye movement) sleep. After about 90 minutes, we enter the first stage of REM sleep, which is the dreaming portion of sleep, and throughout the night we alternate between stages of REM and non-REM sleep. For people with narcolepsy, sleep begins almost immediately with REM sleep and fragments of REM occur involuntarily throughout the waking hours. When you consider that during REM sleep our muscles are paralyzed and dreaming occurs, it is not surprising that narcolepsy is associated with paralysis, hallucinations, and other dream-like and dramatically debilitating symptoms.”
With the results of the sleep study showing I had Narcolepsy, the process of finding medication to control it began. Narcolepsy is typically handled with stimulants during the day and sleep aids at night. Although we tried this therapy, it was a disaster because of my hypertension (stimulants raise blood pressure). We experimented with various drugs – most with nasty side-effects – until we can upon a combination that seemed to control my sleep, and my Dystonia, without affecting my blood pressure.
My Dystonia triggers are anxiety, stress, excitement and sleep irregularities, so controlling my sleep is important in also controlling my Dystonia.
Since late 2011 I’ve been taking a tightly regulated sleep medication. Every 27 days, my mom has to make several phone calls to get the shipment ready in time. It’s always a hassle but we have never had a problem with getting it on time until a week ago. Due to an unusual situation, I ran out. I kept telling myself everything will be okay.
Day 1, I felt fine until around mid to late afternoon. I started having Dystonia attacks. Ultimately, I only had three but each one was worse than the last. I hardly got any sleep. On Day 2 at around 9AM, I started falling asleep but kept waking up because of scary dreams. The only dream in particular that I remember is an unearthly being touching my body parts.
I woke up breathing hard, my heart pounding, and I began crying. Although I was still tired, I decided to get up because I was too afraid to go back to sleep. I stayed in my pajamas all day and watched TV because I didn’t want to do anything out of fear of having hallucinations, or falling asleep. The entire day I was on an emotional roller-coaster, crying one minute, laughing the next, and then doing both at the same time. I had a few Cataplexy attacks, with Narcolepsy, and woke up crying loudly because of the confusion.
Thankfully, this has never happened before and I don’t expect it to happen again. I only had to go two days without my sleep meds and once the shipment arrived and I was able to get the medication into my system, things returned to normal fairly quickly.
Some people may look at this situation and wonder how I can be comfortable being highly dependent on medications, but I look at it as similar to a condition like diabetes, where the patient has to have insulin. I am thankful that there are medications that treat my conditions and remain optimistic that better and better treatments will be developed as time goes on.
In the meantime, I continue to share my experiences with the Dystonia and Narcolepsy communities and hope it helps someone. We can all support each other and #RiseAboveDystonia.
Both Dystonia and Narcolepsy (with and without Cataplexy) are rare disorders. Many people have never heard of Dystonia, and Narcolepsy is not well understood even by people who’ve heard of it. Rare Disease Day is February 28. My Mom will be writing a post about my rare disorders and it will include links for further information. I hope you will take the time to read a bit about these conditions and help spread information to those you know.
Please look here for my Mom’s post, which is scheduled for this Sunday, February 16.