I recently received my Secret Santa gift, a bit belated. It was a coffee mug from Caribou that says, “life is short stay awake for it.” How fitting.
It’s been a week since I received the results to my sleep study. I’ve been researching and trying to process the information I received and my formal diagnosis.
Hypersomnia with Cataplexy.
What exactly does this mean? I’m tired. A lot. Specifically I suffer from excessive daytime sleepiness. It also means that with extreme emotions, including stress, I have episodes where I have total muscle loss and collapse but am still awake and fully aware of what is going on but am unable to move or speak.
To come up with this diagnosis I had to participate in an overnight sleep study followed by a daytime sleep study. They determine your diagnosis based on the time it takes for you to enter REM sleep. During the daytime sleep study you are asked to try to nap on 5 different occasions spaced two hours apart. People that suffer from hypersomnia will be able to fall asleep for at least 3 of the naps – I fell asleep for all of them. People with narcolepsy are able to fall asleep within 5 minutes – I fell asleep within 3 minutes each time. People with narcolepsy however will be able to enter REM sleep during those naps, which I didn’t do. The problem is, I fall into a grey area because I’m on Zoloft which inhibits people from entering REM sleep as quickly as they might otherwise. So although a diagnosis of narcolepsy seems fitting for me because of the cataplexy, since I didn’t enter REM sleep they didn’t formally diagnose me as so.
I also had interesting findings regarding sleep apnea. I still don’t fully understand what the results mean, only that I had extremely normal numbers for one finding and elevated numbers for another finding. So we’ll be trying a CPAP machine to see if it helps at all with my hypersomnia symptoms.
I asked my doctor if it would be beneficial for me to try redoing the sleep study if I went off Zoloft but it turns out that they they treat hypersomnia and narcolepsy the same. I’ve been prescribed a medication that should help promote wakefulness and combat the symptoms of hypersomnia.
Symptoms of hypersomnia, from the Alaska Sleep Clinic are:
- Excessive sleep. 10 or more hours of nighttime sleep plus daytime naps. Not uncommon for sufferers to sleep in excess of 16 hours in a day.
- Excessive daytime sleepiness
- Difficulty waking from sleep (even long sleep) even with the aid of multiple alarms, lights, and help from other people.
- Sleep inertia/drunkenness. An impaired physiological state after awakening, which usually involves confusion, disorientation, and poor coordination.The transition from sleep to wakefulness can be long and difficult to manage. Often, it is easier to return to sleep than to wake up.
- Taking long, unrefreshing naps. While naps can be taken for several hours, they rarely alleviate sleepiness, and waking from them is often followed by sleep drunkenness.
- Cognitive dysfunction. This includes memory problems, automatic behavior, and difficulties with concentration and attention
I’m still not sure what all of this means in relation to my life and how it will continue to affect me. I’m really hoping that with medication and continuing to try to practice good sleep hygiene that I won’t feel completely exhausted all the time, like I do now.
I think one of the hardest things about this diagnosis is that people just don’t understand that this disorder isn’t just being tired. “I’m tired all of the time too, maybe I have a sleeping disorder.” Maybe they do, but the level of tiredness I experience interferes with my every day life. It makes my energy levels low throughout the day. It makes driving extremely difficult. And being this tired all of the time is just hard. The level of caffeine that I consume in a day is probably dangerous. I’m praying that the medication that was prescribed will help. I’m sure it will be one of those things where I will have to try multiple medications before I find one that works for me.
But for now, at least I have answers. And that’s somewhere to start. Have a question about my new diagnosis? Feel free to ask me and I’ll answer what I can based on the research I’ve done and what my doctors have told me.
One thought on “Diagnosis: Life is Short, Stay Awake for It.”
I read your posts, Brixanne and sending you and your family love, hope and energy! The diagnosis is daunting but it seems you have a loving family, doctors trying to help and you are a brave soul.