First the crappy part of my day...trying to take a nap in a secluded section of the library with my head on the table when I started having a terrible dream/very real hallucination that someone had come up behind me and was trying to hurt me. When I tried to wake myself up from it, I was semi-paralyzed (as can happen with some narcoleptics when falling asleep or waking up) and it took me 10 or 15 seconds to shake out of it. This has happened before, but I'm usually home in bed. Even then, it's still very scary to hallucinate in the middle of the night that someone is in your bedroom and you are not able to kick, run, or scream because your body is not responding to the commands you are giving. I can't help but think about "what ifs"...what if there WAS someone there and I couldn't move to get away? what if there was a fire? what if someday my children need me and I can't get out of bed to reach them?
I don't let these ideas invade my thoughts too often because if I did I could "what if" myself to death about all sorts of things. That's why I blog them, so I can get them out and (hopefully) let them go. The best I can do is be as prepared as possible, keep myself and my family as safe as possible, and share my thoughts with the internets.
On a cool note, I saw a woman on campus today walking with her dog that was wearing his little (Pomeranian-sized) service vest. I have wanted to train our dog to be a service dog for me since we got him 6 months ago, so I struck up a conversation with her about her dog and its training. She was happy to tell me all about how she trained him herself, a couple resources to check out, and answered my questions about taking him to various places. I knew that service dogs are allowed anywhere except for a few select places (surgery, for example, and a couple other necessarily sterile environments). I also knew it was ok to train your own dog, but I was very excited to hear from someone that had successfully done it, as both having them trained by someone else and buying a pre-trained service dog are considerably expensive. This meeting has rekindled my motivation to explore the possibility of training our dog to be a service dog. Who knows, maybe one day when I'm about to doze off unexpectedly, a swift lick in the face will help to snap me out of it.
Thursday, November 19, 2009
Narco thoughts for the day...
Lately, I have found that 200mg of Provigil (Pro-V going forward) once a day is just not cutting it most days. I am prescribed enough to take it "1-2 times daily", so this isn't a huge problem, it just bothers me that I need it. I realize that with a stimulant it's possible to need to a higher dose over time in order to achieve the same efficacy, it's just another frustrating reminder that, barring discovery of a cure, I will be on this medication for the rest of my life. My family member who also has Narcolepsy has taken 400mg all along and I have read of people taking even high doses, so I guess I felt some sort of comfort that I had a less severe case. Any case of Narcolepsy is debilitating, but I know it could be much worse.
"I need my Pro-V" (sung to the tune of "I want my MTV" by Sting at the end of Dire Straits' "Money for Nothing")
"I need my Pro-V" (sung to the tune of "I want my MTV" by Sting at the end of Dire Straits' "Money for Nothing")
Monday, October 5, 2009
A Bit of a Background
I was officially diagnosed with Narcolepsy at age 21, but suffered with Excessive Daytime Sleepiness all through my teen years. Now that I am familiar with cataplexy, I remember instances as far back as childhood where I would laugh at something and not be able to tightly grip a pen or pencil for a minute or two afterward. I have had "attacks" of cataplexy as an adult, but they are rare and not life-altering. For me, an attack consists of the feeling that my knees go a bit weak, but people around me have never even noticed when it's happened, and it passes in an instant. I have read of some people not being able to walk, get out of bed, or hold their children without fear of an attack, and I feel truly fortunate that my case is not more severe.
Being diagnosed with Narcolepsy was one of the hardest and most wonderful days of my life. It was depressing to know that I had this condition for which I would be on medication for the rest of my life, and that it would continue to present many challenges that people without Narcolepsy did not have to think about. My only regret is that I wasn't diagnosed sooner, but I'm sure every Narcoleptic feels this way. My high school experience would have been vastly different if I was awake for more of it. After a short pity party and a good shoulder to cry on, I moved on to feeling so RELIEVED! Finally, I could put a name with the issues I had been having all these years, and it was motivating to know that I wasn't just lazy!
Taking Provigil gave me a leg up so that I could finally feel the way a rested, non-Narco feels on a regular day. I started taking college courses part-time a year or so later, and was able to stay awake through (most of) the classes.
Fast-forward a few years...I am now a full-time college student in my last semester. I will graduate about a month after my 29th birthday. I just got married in May to a fantastic man who has known from day one about my condition and accepts the challenges that he will face as the husband of a Narco. I am still on Provigil, though I had to switch birth control methods as a result of potential conflict with my medication, and am happy to report that I don't experience any side effects or issues with efficacy that some other folks have reported with using Provigil. I do still get sleepy in class from time to time, particularly when the room is warm and/or the lecture boring. :) Over the years, I chose to tell a few professors about my condition, usually when the class size was small enough that they knew who I was and would clearly notice if I nodded off. Everyone has been very understanding.
Upcoming challenges for me include: finding a job, finding a job working for a company that will be somewhat flexible regarding my condition, and one that doesn't have a super-long commute (long, monotonous drives are not ideal for a Narco).
The biggest Narcolepsy-related challenge I will face will be pregnancy. This is the main motivation behind the starting of a blog. We want to have children, and I plan to stop taking Provigil when we start trying to get pregnant. There has not been a great deal of research done on the effects of Provigil during pregnancy, but I have read that it can increase the chance of miscarriage, and I don't want to expose my baby to the medication if I can help it. This may change, but that's the plan for now.
Being diagnosed with Narcolepsy was one of the hardest and most wonderful days of my life. It was depressing to know that I had this condition for which I would be on medication for the rest of my life, and that it would continue to present many challenges that people without Narcolepsy did not have to think about. My only regret is that I wasn't diagnosed sooner, but I'm sure every Narcoleptic feels this way. My high school experience would have been vastly different if I was awake for more of it. After a short pity party and a good shoulder to cry on, I moved on to feeling so RELIEVED! Finally, I could put a name with the issues I had been having all these years, and it was motivating to know that I wasn't just lazy!
Taking Provigil gave me a leg up so that I could finally feel the way a rested, non-Narco feels on a regular day. I started taking college courses part-time a year or so later, and was able to stay awake through (most of) the classes.
Fast-forward a few years...I am now a full-time college student in my last semester. I will graduate about a month after my 29th birthday. I just got married in May to a fantastic man who has known from day one about my condition and accepts the challenges that he will face as the husband of a Narco. I am still on Provigil, though I had to switch birth control methods as a result of potential conflict with my medication, and am happy to report that I don't experience any side effects or issues with efficacy that some other folks have reported with using Provigil. I do still get sleepy in class from time to time, particularly when the room is warm and/or the lecture boring. :) Over the years, I chose to tell a few professors about my condition, usually when the class size was small enough that they knew who I was and would clearly notice if I nodded off. Everyone has been very understanding.
Upcoming challenges for me include: finding a job, finding a job working for a company that will be somewhat flexible regarding my condition, and one that doesn't have a super-long commute (long, monotonous drives are not ideal for a Narco).
The biggest Narcolepsy-related challenge I will face will be pregnancy. This is the main motivation behind the starting of a blog. We want to have children, and I plan to stop taking Provigil when we start trying to get pregnant. There has not been a great deal of research done on the effects of Provigil during pregnancy, but I have read that it can increase the chance of miscarriage, and I don't want to expose my baby to the medication if I can help it. This may change, but that's the plan for now.
In the beginning...
Here is a portion of a paper I wrote a number of years ago about Narcolepsy and part of my experience with being diagnosed. I will post the full version when I find it, but I thought this was a good place to start the new blog. Those that are familiar with Narcolepsy will find this quite boring, but hopefully it will be informative to anyone that is unfamiliar with the condition.
There was a time when I was completely lazy and lacking motivation, and believed that it was simply due to being a teenager. In high school, I was unable to stay awake through an entire class unless we were on our feet or participating in some sort of activity. I assumed that not getting enough sleep at night, or not maintaining a healthy diet caused this problem. After many failed attempts at correcting the problem, I gave up and accepted the fact that I was lazy. It became acceptable that I would fall asleep at a friend’s house when we sat down to watch a movie. I wouldn’t drive for longer than half an hour at a time, knowing full well I would doze behind the wheel. Even on short trips, I had to fight to keep my eyes open. My friends all knew that I fell asleep everywhere I went, and we all just got used to it. It did strain some relationships, because it’s frustrating for people to understand why I couldn’t stay awake when sitting on someone’s couch watching a movie. Some people were offended, thinking that I wasn’t interested enough in their company to be alert, some people thought it was quite entertaining and would make jokes about it with me. I didn’t mind that too much, because it happened so frequently that I had grown accustomed to it. I got to the point where I didn’t bother to fight the urge to fall asleep, assuming I was in a safe place.
As I grew older, the problem worsened and had more consequences. A year after high school, I was let go from a desk job because I was caught dozing on two different occasions. When my boss told me that a customer had pointed out to her that I was at my desk with my eyes closed, I was mortified. At my next job I tried everything from soda, to herbal stimulants, to candy: nothing worked. This problem would have continued indefinitely, until, on a routine doctor’s visit, I mentioned my symptoms and how significantly they were affecting my life. My doctor recommended me to a neurologist to look into the possibility that I may have a sleep disorder. Upon meeting with the neurologist, I filled out hours of paperwork on my symptoms, family history, and medical history. He asked me questions, took notes, and explained the different types of sleep disorders. His unofficial diagnosis was that I had a disorder called Narcolepsy.
Narcolepsy is defined as a sleep disorder characterized by sudden and uncontrollable episodes of deep sleep. It is a chronic neurological disorder affecting the parts of the brain that regulate sleep and wakefulness. Medical researchers have recently identified the cause as the absence of a neurotransmitter, normally present in the hypothalamus, which produces the hypocretin peptide essential to the human sleep-wake cycle. Narcolepsy occurs in approximately 1 in 1,000 people, this amounts to about 200,000 people in the United States, however, only 25% of them are correctly diagnosed. Narcolepsy usually begins between the ages of 10 and 20 and, once it appears, is a life-long condition. People with this disorder often remain undiagnosed or misdiagnosed for 10 to 15 years after the onset of symptoms.
Some of the symptoms of Narcolepsy include:
Cataplexy: Sudden episodes of loss of muscle control, ranging from slight weakness to complete body collapse, which are often precipitated by intense emotion.
Sleep Paralysis: Temporary inability to talk or move when falling asleep or waking up.
Hypoagogic Hallucinations: Dreamlike experiences that are very vivid and often frightening, which occur while dosing or falling asleep.
Sleep Disruption: Fragmented nighttime sleep with frequent awakenings.
Automatic Behavior: Continued performance of routine tasks while falling asleep or dosing without memory of performing the action.
The most common and disabling symptom of Narcolepsy is Excessive Daytime Sleepiness (EDS). EDS means feeling drowsy and tired, and having a need to sleep during the day. People with EDS are unable to stay awake during the day, even after getting enough sleep at night, and fall asleep at times that they shouldn’t or don’t want to sleep, such as while eating, talking, driving, or working. They also frequently doze, nap, or fall asleep in situations where they need to be or want to be fully awake and alert. Conscious efforts to fight sleep, such as participating in physical activity or consuming caffeine, can be temporarily successful, but the overpowering need for sleep eventually becomes irresistible. Narcolepsy is considered to be, in part, an abnormal intrusion of REM sleep into the waking state. During normal sleep, REM cycling is tightly regulated; REM periods occur at approximately 90-minute intervals, with duration increasing as the night progresses. Dreaming and skeletal muscle atonia occur during normal REM sleep, which may explain the hypnagogic hallucinations, cataplexy, and sleep paralysis in Narcolepsy.
In order to be officially diagnosed with Narcolepsy, in addition to the information my doctor had gathered, I needed to participate in a sleep study. The over-night sleep study is called a nocturnal Polysomnogram, and the purpose was to gather necessary information to rule out any other sleep disorders and officially diagnose Narcolepsy. I arrived at the sleep center at 10pm, and they showed me to my private hospital room. In the room was an infrared video camera to record my movements while I slept. The nurses placed about 30 electrodes on my scalp that would record my brain waves and eye movement to be reviewed later. I had electrodes on my legs to measure my movement, and an oxygen sensor on my fingertip. All of these wires were plugged into a large computer next to the bed. In the morning, I was awakened but couldn’t shower because the electrodes placed on my head the night before would be used throughout the day for the next procedure. The Multiple Sleep Latency Test (MSLT) would consist of 4 naps, 2 hours apart and approximately 20 minutes in duration. The purpose of the test is to record the length of time it takes for the patient to fall asleep, and how quickly they enter REM sleep. Patients with Narcolepsy enter REM sleep considerably faster than those without the condition. During this portion of the study, not only did I fall asleep within 2 minutes each time (5 minutes or less would usually indicate a problem), but I also entered REM sleep almost immediately. Most people don’t enter REM sleep until 60 minutes into their sleep cycle. The findings of the sleep study were enough to diagnose me with Narcolepsy and begin treatment.
There is no cure for Narcolepsy; there are only medications to treat the symptoms. The most debilitating for me was the excessive daytime sleepiness, and for that I was prescribed one of the newest medicinal treatments available.
Provigil (pronounced “pro” “vijul”) is a modafinil tablet made by Cephalon that was approved by the US FDA in 1998.
There was a time when I was completely lazy and lacking motivation, and believed that it was simply due to being a teenager. In high school, I was unable to stay awake through an entire class unless we were on our feet or participating in some sort of activity. I assumed that not getting enough sleep at night, or not maintaining a healthy diet caused this problem. After many failed attempts at correcting the problem, I gave up and accepted the fact that I was lazy. It became acceptable that I would fall asleep at a friend’s house when we sat down to watch a movie. I wouldn’t drive for longer than half an hour at a time, knowing full well I would doze behind the wheel. Even on short trips, I had to fight to keep my eyes open. My friends all knew that I fell asleep everywhere I went, and we all just got used to it. It did strain some relationships, because it’s frustrating for people to understand why I couldn’t stay awake when sitting on someone’s couch watching a movie. Some people were offended, thinking that I wasn’t interested enough in their company to be alert, some people thought it was quite entertaining and would make jokes about it with me. I didn’t mind that too much, because it happened so frequently that I had grown accustomed to it. I got to the point where I didn’t bother to fight the urge to fall asleep, assuming I was in a safe place.
As I grew older, the problem worsened and had more consequences. A year after high school, I was let go from a desk job because I was caught dozing on two different occasions. When my boss told me that a customer had pointed out to her that I was at my desk with my eyes closed, I was mortified. At my next job I tried everything from soda, to herbal stimulants, to candy: nothing worked. This problem would have continued indefinitely, until, on a routine doctor’s visit, I mentioned my symptoms and how significantly they were affecting my life. My doctor recommended me to a neurologist to look into the possibility that I may have a sleep disorder. Upon meeting with the neurologist, I filled out hours of paperwork on my symptoms, family history, and medical history. He asked me questions, took notes, and explained the different types of sleep disorders. His unofficial diagnosis was that I had a disorder called Narcolepsy.
Narcolepsy is defined as a sleep disorder characterized by sudden and uncontrollable episodes of deep sleep. It is a chronic neurological disorder affecting the parts of the brain that regulate sleep and wakefulness. Medical researchers have recently identified the cause as the absence of a neurotransmitter, normally present in the hypothalamus, which produces the hypocretin peptide essential to the human sleep-wake cycle. Narcolepsy occurs in approximately 1 in 1,000 people, this amounts to about 200,000 people in the United States, however, only 25% of them are correctly diagnosed. Narcolepsy usually begins between the ages of 10 and 20 and, once it appears, is a life-long condition. People with this disorder often remain undiagnosed or misdiagnosed for 10 to 15 years after the onset of symptoms.
Some of the symptoms of Narcolepsy include:
Cataplexy: Sudden episodes of loss of muscle control, ranging from slight weakness to complete body collapse, which are often precipitated by intense emotion.
Sleep Paralysis: Temporary inability to talk or move when falling asleep or waking up.
Hypoagogic Hallucinations: Dreamlike experiences that are very vivid and often frightening, which occur while dosing or falling asleep.
Sleep Disruption: Fragmented nighttime sleep with frequent awakenings.
Automatic Behavior: Continued performance of routine tasks while falling asleep or dosing without memory of performing the action.
The most common and disabling symptom of Narcolepsy is Excessive Daytime Sleepiness (EDS). EDS means feeling drowsy and tired, and having a need to sleep during the day. People with EDS are unable to stay awake during the day, even after getting enough sleep at night, and fall asleep at times that they shouldn’t or don’t want to sleep, such as while eating, talking, driving, or working. They also frequently doze, nap, or fall asleep in situations where they need to be or want to be fully awake and alert. Conscious efforts to fight sleep, such as participating in physical activity or consuming caffeine, can be temporarily successful, but the overpowering need for sleep eventually becomes irresistible. Narcolepsy is considered to be, in part, an abnormal intrusion of REM sleep into the waking state. During normal sleep, REM cycling is tightly regulated; REM periods occur at approximately 90-minute intervals, with duration increasing as the night progresses. Dreaming and skeletal muscle atonia occur during normal REM sleep, which may explain the hypnagogic hallucinations, cataplexy, and sleep paralysis in Narcolepsy.
In order to be officially diagnosed with Narcolepsy, in addition to the information my doctor had gathered, I needed to participate in a sleep study. The over-night sleep study is called a nocturnal Polysomnogram, and the purpose was to gather necessary information to rule out any other sleep disorders and officially diagnose Narcolepsy. I arrived at the sleep center at 10pm, and they showed me to my private hospital room. In the room was an infrared video camera to record my movements while I slept. The nurses placed about 30 electrodes on my scalp that would record my brain waves and eye movement to be reviewed later. I had electrodes on my legs to measure my movement, and an oxygen sensor on my fingertip. All of these wires were plugged into a large computer next to the bed. In the morning, I was awakened but couldn’t shower because the electrodes placed on my head the night before would be used throughout the day for the next procedure. The Multiple Sleep Latency Test (MSLT) would consist of 4 naps, 2 hours apart and approximately 20 minutes in duration. The purpose of the test is to record the length of time it takes for the patient to fall asleep, and how quickly they enter REM sleep. Patients with Narcolepsy enter REM sleep considerably faster than those without the condition. During this portion of the study, not only did I fall asleep within 2 minutes each time (5 minutes or less would usually indicate a problem), but I also entered REM sleep almost immediately. Most people don’t enter REM sleep until 60 minutes into their sleep cycle. The findings of the sleep study were enough to diagnose me with Narcolepsy and begin treatment.
There is no cure for Narcolepsy; there are only medications to treat the symptoms. The most debilitating for me was the excessive daytime sleepiness, and for that I was prescribed one of the newest medicinal treatments available.
Provigil (pronounced “pro” “vijul”) is a modafinil tablet made by Cephalon that was approved by the US FDA in 1998.
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