Narcolepsy Type 2: Your Experience and Treatment
August 30, 2022 2:31 PM Subscribe
Next month I'll be doing my first sleep study after a decade of worsening sleep issues. Right now there's a tentative diagnosis of Narcolepsy Type 2 on the table. Type 2 is characterized by an absence of cataplexy, the sudden loss of muscle tone typically associated with the disorder. Do you have Type 2? What's your life like? YANMD.
Mod note: fixed the link, carry on
posted by jessamyn (staff) at 2:43 PM on August 30, 2022 [1 favorite]
posted by jessamyn (staff) at 2:43 PM on August 30, 2022 [1 favorite]
About 5 years ago, I had a sleep doctor diagnose me with that after a somewhat inconclusive sleep study (I had very short sleep latency on the MSLT but no REM onset). A few years later, did another sleep study and a different sleep doctor said no narcolepsy because I still didn’t go into REM during the MSLT, so I was just diagnosed with idiopathic hypersomnia. The treatment was the same in both cases, prescriptions for modafinil or armodafinil, which make you feel awake/not sleepy, but had pretty bad side effects for me. But I nearly cried the first time I felt truly awake in years.
After a third sleep study and third sleep doctor earlier this year, the current diagnosis is Upper Airway Resistance Syndrome, which is a little controversial but basically seems to be difficulty breathing while sleeping, without enough full apneas to count as anything more than mild sleep apnea. Current treatment is a CPAP (actually an APAP), and it’s been a struggle.
I say all that because I know a few people who had to go back for multiple sleep studies to explain their sleepiness, and I’m one of them. No solution yet for me, but mostly I just manage symptoms. The biggest thing I do is limit driving - never if I’m tired, never if it’s more than an hour of driving, never if I’m running on low sleep, never if I’m going to have a drink, etc. Besides that, life is pretty normal. I tell people I have sleep issues so they don’t get offended if I fall asleep while talking to them and I have accepted that I’ll probably fall asleep in the movie theater/theater/back of an Uber.
posted by loulou718 at 5:28 PM on August 30, 2022 [2 favorites]
After a third sleep study and third sleep doctor earlier this year, the current diagnosis is Upper Airway Resistance Syndrome, which is a little controversial but basically seems to be difficulty breathing while sleeping, without enough full apneas to count as anything more than mild sleep apnea. Current treatment is a CPAP (actually an APAP), and it’s been a struggle.
I say all that because I know a few people who had to go back for multiple sleep studies to explain their sleepiness, and I’m one of them. No solution yet for me, but mostly I just manage symptoms. The biggest thing I do is limit driving - never if I’m tired, never if it’s more than an hour of driving, never if I’m running on low sleep, never if I’m going to have a drink, etc. Besides that, life is pretty normal. I tell people I have sleep issues so they don’t get offended if I fall asleep while talking to them and I have accepted that I’ll probably fall asleep in the movie theater/theater/back of an Uber.
posted by loulou718 at 5:28 PM on August 30, 2022 [2 favorites]
My husband has type 2 narcolepsy. He takes modafanil. It works pretty well as long as he is engaged in things. He's prone to (micro) napping at times when bored or mid-afternoon.
If we are taking a trip, he drives in the AM and I handle the PM.
The most important thing for him is good sleep hygiene + meds.
Feel free to message me!
posted by heathrowga at 5:42 PM on August 30, 2022
If we are taking a trip, he drives in the AM and I handle the PM.
The most important thing for him is good sleep hygiene + meds.
Feel free to message me!
posted by heathrowga at 5:42 PM on August 30, 2022
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Type 2 narcolepsy (previously termed narcolepsy without cataplexy). People with this condition experience excessive daytime sleepiness but usually do not have muscle weakness triggered by emotions. They usually also have less severe symptoms and have normal levels of the brain hormone hypocretin.
posted by The Adventure Begins at 2:38 PM on August 30, 2022