moving forward

navigating through the life that was and moving into the life that is

Idiopathic Hypersomnia…huh?

on August 7, 2013

Idiopathic Hypersomnia (IH) is literally translated to excessive sleepiness which occurs spontaneously or from an obscure or unknown cause. After the birth of Cameron, my daytime sleepiness became more concerning although it was something I had always known was problematic. I did multiple nighttime sleep studies in 2010 to rule out sleep apnea, periodic limb movement, etc. I passed that one fine and I next did an MSLT, a multiple sleep latency test which is done in the daytime.

In the MSLT, a person is given 4-5 opportunities to sleep every two hours during normal wake times. The specialist uses the test to measure the extent of daytime sleepiness (how fast the patient falls asleep in each nap, also called sleep latency), and also how quickly REM sleep begins. A positive MSLT (diagnostic for Idiopathic) is obtained when the patient did fall asleep with a mean sleep latency below 8 minutes in the naps, and had not more than 1 nap where REM sleep was reached (otherwise the patient may be diagnosed as narcolepsy).

My results in 2010 were considered severe and I began medication. Idiopathic Hypersomnia (IH) is a lifelong diagnosis and unfortunately because of the unknown origin it can be complicated to treat. It is one of those invisible illnesses that is debilitating, yet unrecognizable by physical symptoms other than habits that are often seen as lazy and unmotivated. There is no cure, only learning how to make it manageable. I was on the medication, Nuvigil, when the accident occurred and was surprised to find out I was on a different form of the med when I awoke in the hospital. Apparently excessive sleepiness is normal for TBI injury patients and I was on it for that and not for the IH. Since the accident, my body has been through a lot as many of you know. I had tried to go back on the Nuvigil shortly after the accident, but my body was not ready. After a year of difficulties with both sleeping at night and staying awake during the day, something had to give. With the cognitive and physical fatigue associated with the brain injury and the IH diagnosis, I finally went in to get retested and prove to my doubting mind that I did still indeed need to take the medicine.

I went in for an overnight study first. The overnight sleep study is to rule out sleep apnea etc. and also to make sure that prior to your MSLT you have had a solid night of sleep. A main indicator of IH is excessive daytime sleepiness despite a night of good rest. And boy did I sleep well! 8 and 1/2 hours of sleep!!! In one night! It was awesome. So if you sleep well, on to the MSLT. You are there for the day, from the moment you wake that morning until around 5:00 PM. You can do anything you want at the facility, watch TV, read, go for a walk, but you can not have caffeine or sleep without permission. 😦 5 separate times during the day you fill out a questionnaire about how you are feeling and then you are asked to try to fall asleep. Each time you fall asleep, you are not permitted to sleep more than around 15 minutes. It really is like a slow torture for someone who falls asleep like me who falls asleep every time! As stated above, your sleep latencies (time you fell asleep in) are averaged together. Not only did I fall asleep all 5 times, despite my 8 and 1/2 hours of sleep the night before, I also had one occurrence of REM sleep (2 occurrences is a sign of narcolepsy). In addition to that, a sleep latency average of under 8 minutes is considered significant. My sleep latency average was 2 and 1/2 minutes with the sleep latency of my 4th nap beginning in 1 and 1/2 minutes!

Eek! Well Sandra, you do indeed have Idiopathic Hypersomnia and you will have to continue to adjust to that along with the cognitive and physical fatigue of the TBI. For your enjoyment, here is what I looked like.

“You have to laugh at yourself, because you’d cry your eyes out if you didn’t.” Emily Sailers

I share all of this for informational purposes. Not because I want pity or sympathy but merely to show that without asking someone specifically, you can never claim to understand them or know what it’s like to be in their shoes. If an outsider came to my house, they might think I was lazy, because I still try to take a nap each day. Even when my room is messy or my house needs to be vacuumed. Yet for me that is progress and from the 2 naps that were required when I first returned home from the hospital. Along with TBI, Hypersomnia is one of those disorders which people who do not experience it are sure that it could not exist. There are tons of articles out there, but I found this one on myths of IH very informative:

Idiopathic Hypersomnia Myths

So before you presume to know how another person lives their life, consider all of the things that you may not know. Show that individual grace and when you do, you may be just the person they needed to interact with to turn their day around. Just the person that would validate how hard they have been working. Whether it’s grief, illness, pain, abandonment, disappointment, hurt, loneliness, we are all walking around with things about us that no one can see. Those emotions, those circumstances, those feelings are by no means an excuse to entitlement or bad behavior, but they are who we are and we can’t ignore them. The man holding the elevator and annoying you by slowing you down, maybe he’s waiting for his daughter to wheel herself into the elevator with her new wheel chair because she just wants to do something by herself. Maybe that driver who insists on doing 55 in a 55 with no passing lane, is driving for the first time since her husband died in a car accident. Maybe the woman in front of you at the grocery store who is disorganized and can’t find her debit card, just came from a benefit honoring her deceased husband. Then again, maybe not? Maybe they are just what you are presuming them to be. But who are you to judge, who are you to assume your time is more valuable, your life more important? You will never know. So in that moment, you can break their spirit or you can build it up with a smile, a kind word, a kind gesture. There is power in kindness and destruction in judgement. Be powerful.


One response to “Idiopathic Hypersomnia…huh?

  1. Jeff Cannon says:

    I’m addicted to your site… You live in my neighborhood. I spoke with you once at the pool… I’m not sure how I found your site, I think it was because you and I have so much in common. I know that sounds crazy when you don’t know me. All I know is I wish I was as strong as you are.. Your stories and strength make me want to move forward like you .. If you ever need a friend just text me … And thanks , Jeff

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