Type 1 narcolepsy with cataplexy1/5/2024 Secondary narcolepsy also can be caused by a brain tumor, multiple sclerosis, or brain inflammation called encephalitis. It can happen after an injury to a deep part of your brain called the hypothalamus that regulates your sleep. Other than that, your symptoms will be similar to that of type 1 narcolepsy. This was once called narcolepsy without cataplexy, meaning you don’t lose muscle control. Interrupted sleep or not being able to fall asleep or stay asleep at night.Vivid and sometimes scary hallucinations.Sleep paralysis, when you’re briefly unable to move.Unstoppable sleep attacks - a dangerous urge to sleep anywhere, and anytime, such as while walking.You may also have other typical symptoms of narcolepsy, such as: ![]() You’ll be awake and aware of what’s happening. These episodes may last a few seconds or a couple of minutes. Anger, excitement, or laughter leads you to lose muscle control. The term refers to sudden, temporary muscle weakness that can leave you immobilized. Type 1 used to be called narcolepsy with cataplexy. Of the two major forms of the disorder, this is easier to diagnose. This lifelong condition comes in several distinct types. Still others may only get mildly sleepy once in a while. Some people may have episodes of severe muscle weakness triggered by shock or other strong emotions. You can get so drowsy during the day that you might fall asleep suddenly while driving or eating. Finding out about this abnormal dream phenomena at night-the paralysis, the bizarre dreams, the nightmares, the hallucinations-all that can add up to illustrating a picture that would make you think about narcolepsy.Narcolepsy is a disorder that happens when your brain’s control of your sleep-wake cycle is faulty. This can be particularly helpful information if you have somebody who doesn’t quite meet the diagnostic criteria for narcolepsy and may not have those 2 sleep onset REM periods but are very sleepy. This is a REM-based disorder, so there’s REM breakthrough during the daytime but at nighttime, they are really going to town with regard to their dreams. I think that speaks to this whole idea that Dr Maski was talking about. These patients have some of the most action-packed dreams I’ve ever heard. They don’t ask about the quality and the content of dreams. I think this is somewhat overlooked, even by some sleep specialists. Often, patients with narcolepsy have epic dreaming. Russell Rosenberg, PhD, DABSM: Dr Thorpy, I just wanted to follow up on 1 thing from Dr Avidan, and this isn’t part of the diagnostic criteria. If you were to do CSF hypocretin, you’d find that it was normal in those patients. They have the same sleep study findings as the type 1 patients-with the sleep onset REM periods and the sleepiness-but, of course, they don’t have cataplexy. Thorpy, MD: A value, of course, in type 1 narcolepsy because type 2 narcolepsy patients have normal hypocretin. ![]() So in those situations, I’ll favor doing a lumbar puncture for low hypocretin values. So in those cases where narcolepsy is highly suspected-and I would say also, I test for this HLA allele-it increases the likelihood that the hypocretin would be low if the HLA is, in fact, positive. So when somebody goes to do the polysomnogram and the multiple sleep latency test, it’s a false-negative test because it suppresses REM. Depression is a common comorbidity of narcolepsy, and oftentimes patients are on medications like SSRIs or SNRIs that actually suppress REM sleep. Kiran Maski, MD, MPH: I think that in cases where you’re not able to access a sleep study or a pediatric sleep center to do the testing appropriately, it is another way of making the diagnosis. Thorpy, MD: And is it more important to be able to do it in children than in adults? Or not necessarily? Maybe Dr Maski can talk about this, too, because in those cases where we’re just not sure-and it’s really important to nail down that diagnosis-I’ve known patients to agree to undergo that test. My experience is that very few sleep specialists will actually do that. Russell Rosenberg, PhD, DABSM: Well, not many patients want to undergo a lumbar puncture to get that cerebrospinal fluid, and there are limited places in the United States that do this. How easy is it to get CSF hypocretin measured? If a patient has 2 sleep onset REM periods-1 during the day and 1 at night-that’s consistent with the diagnosis of narcolepsy. That’s a new feature in the diagnostic criteria-having a sleep onset period at night counts toward having type 2. ![]() You need to have those sleep studies, as Russ mentioned-the multiple sleep latency test-to document sleep onset REM periods during the day, and also looking for sleep onset REM periods at night. Type 1 is associated with cataplexy, which needs to be present for type 1 narcolepsy. Thorpy, MD: We talked a little about the different types of narcolepsy-type 1 and type 2.
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