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How often would you have a "good" day before treatment?

I haven't got treatment yet, but it just occured to me that I haven't had a day where I woke up in the morning feeling half decent, and then felt decent for a good chunk of the day, in perhaps over 2 years now. I used to have a pretty decent day every few months or so where I would get all my chores done before the sleepiness wrecked me again.

How frequent was this for you? Did you ever have any decent days?

  1. I am 63 and have just been medically diagnosed. I can remember a handful of days when I was a child, where I woke up feeling like a superhero. I always hoped that I could have more of those, but as time went on, those days became fewer and farther between. The time I woke up feeling that way was when I was in college. When I had that one, I was quite surprised since I had not had one in years at that point. I suspected that would be the last one I would ever had, and I was correct as it turns out.

    It's a relative thing of sorts to me. What I came to realize, is that "superhero" feeling I had when I awakened happy, focused, and full of energy compared to feeling like I had been exhumed every morning, is how normal people wake up. For all of my life that I can remember, I had had decent to poor days. I know this for two reasons 1) I can remember those handful of days waking up and feeling great, and 2) Observing other people and realizing that they did not have this issue.

    1. The memory problems are really weird for me I don't know what to expect. My long term memory is just fine, but I forget about appointments and things I'm supposed to be doing on a regular basis, my brain is just so foggy it's hard to keep track of things at all especially time.

    2. I know exactly what you mean Ricky. I think the not knowing what to expect is the scariest part as there isn't really much information on the potential risks for people with narcolepsy and memory issues. I think especially in relation to the medications we take (some which aren't even actually made for narcolepsy) and the side effects that could potentially develop over time. Do you take any meds? Take care. Iris xx

  2. I can't remember the last time I was able to wake up in the morning at all haha! It has gotten a lot worse more recently, I used to be able to get up sometimes if I had to (and then feel dreadful all day) but it's just too hard at the moment. I am wondering considering your time frame too, whether the stress of the pandemic might be impacting your (and mine, it has just occurred!) symptoms. I do have days that are better than others and I also remember it before. I can definitely relate to this fluctuation. I'm sorry to hear it's been so long it's been for you too since you had a clear headed day and were able to get stuff done. I'm wishing you all the best and hoping that things will improve for you in the future. Take Care, Lauren (Team Member)

    1. I can honestly say that I do not remember having any decent days before my diagnosis. lol. Take care, Iris xxx

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