Narcolepsy sucks

Today I slept until 1 pm. I probably went to sleep at like…what 10 or 11 pm the night before. So that’s like well over 12 hours of sleep. I was able to be awake for literally one hour before becoming drowsy and sleepy again even after taking my medication. I had to drink coffee to finally wake up.

It is so so frustrating…I keep gaining tolerance to my narc meds and they have to keep upping my dose but now I am already on the highest dose and it is starting not to work anymore. The next step is to start adding on meds and i hate to have to go on more.


me too
i slept 4 different times from afternoon to now 5 am

Hey. I can relate. I have chronic fatigue and that makes me sleep a ton.

I thought I had narcolepsy too, but I realized it’s because of my chronic fatigue.

First rule out any deficiencies especially vitamin d, vitamin b12 and thyroid. Deficiencies in either of these can appear like chronic fatigue, sleepy during day time etc.

To get good sleep at night you need to remain busy during day time so never nap during day time even for 5 minutes as it can disrupt night sleep.

Also deficiency in certain vitamins like zinc can gives issues like insomnia, anxiety, depression etc so its worth to check this too.

Avoid any caffeine and other stimulant based things especially after 5 pm as it can keep you awake at night.

I have already had specific testing done that confirmed me as narcoleptic :slight_smile:

I have just recently developed a vitamin D deficiency but have been taking supplements for it. I have had these sleepiness issues for years though, since I was 16, which is around the normal age of onset for narcolepsy.

I too have this issue but changing habits greatly helped. I mean avoiding all naps during day time and cutting down caffeine beverages after 5 pm.

Vitamin D i was low, value was 18 but after supplementing value reached 100 and all day time fatigue vanished. Vitamin D deficiency also bought back pain but that all gone after bringing vitamin D to optimal range. Vitamin b12 deficiency also bring tiredness, mental sluggishness just like low thyroid levels so correcting these all essential. Zinc improves night time sleep quality, easy to fall asleep at night also very good for anxiety, depression and it even improves testosterone. Thus it too have some part in fatigue especially if deficient in it.

The thing is we can’t change it quickly but needs to slowly change. Stopping day time naps is must as even the slightest nap can affect the ability to get good sleep at night.

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