An Older Perspective On a New Diagnosis
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I was diagnosed with Narcolepsy this past February. I was stunned but not afraid. It never occurred to me there was something ‘wrong’ with all the sleeping I was doing. I figured okay tiredness- there are pills for that. No problem.
Little information for those diagnosed after age 65
It is now 8 months into living with Narcolepsy. Despite the deep dive taken to learn about Narcolepsy; reading NIH Studies, peer review papers, dictionary in lap, and posts of people’s experiences; most of the info was not yet pertinent.
Finding there was scant info on the difference between being diagnosed at 65+; when common diagnoses are made earlier in life. I came to see there was an absence of the basic info. Information about how Narcolepsy 2 could affect my life; that info would have changed many of the life decisions I was currently making.
Naps and medication
Naps are the best thing when the cement blocks of tiredness begin to drag you downwards (not everyone can nap as needed). Getting basic education on medication as being only a short-stop substitution for naps.
Meds mask the tiredness and pump you up so you can push through. It would need 2-4 weeks for my body to accept and adjust. Meanwhile, it might be unpleasant. That it was more likely 4 weeks because I later learned, studies on the stimulants had mostly been conducted with male candidates.
Failing to advocate for myself I am now having to readjust my entire life once again. That lesson is learned. High price being paid as I write.
Where are you in your narcolepsy diagnosis journey?