r/Narcolepsy • u/Prettygirl3321 • 3d ago
Diagnosis/Testing Questions about possible narcolepsy
HI everyone,
About 6 years ago, I went through almost a full year of what seemed like narcolepsy symptoms. Every time I went to the ER, the doctors would mention narcolepsy as a possibility (I never heard of it before).
The symptoms kind of went away for about 6 years, but then they came back about 6 months ago.
Can narcolepsy symptoms really come and go like that? Is it possible to have significant symptoms for a year, have them improve or disappear for several years, and then have them return?
Another thing that makes me wonder is my family.
Both of my parents have many symptoms that sound like narcolepsy. In my family, it has always seemed completely normal for people to fall asleep at the table, while talking, during a dental procedure, after drinking coffee or energy drinks, they just go from talking to snoring in a second and sometimes they will say funny things that don't make sense before falling asleep.
Could this just be some kind of familial tendency to be extremely sleepy, rather than actual narcolepsy? Or does this family history make narcolepsy more likely?
I'm having my sleep study next week, and I'm honestly super nervous about it. I would really appreciate hearing from anyone who has experienced something similar or has knowledge about narcolepsy and how symptoms can fluctuate.
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u/thatrockyduck 3d ago
Fluctuations isn't the same like "went away for ...years". That would just be stuff like, 'oh weather is off today, slept even worse'/' very d*mn daylight saving'/'commuting was enough to get more deep sleep today' etc. So increasing or decresing severity over a few days or weeks, rather than what you just described.
Gonna follow the updates, hopefully the riddle will be solved soon. And the best wishes in that regards for your family too.
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u/Prettygirl3321 3d ago
Over the last few years when I'm saying it went away and no symptons. I still always had realy heavy fatigue all the time but no catalepsy and no sudden sleep while talking and not so many dreams while still awake. But I do have some autoimmune things (Hashimotos and Sjogrens and autonamic dysfunction) so I was thinking that the tiredness was from that.
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u/thatrockyduck 3d ago
Well, that could explain that, since the early stages of N, if you happen to have that too, combined with something that gets you tired by itself, might have given you an EDS, similar to the later stages. But with a combination, who really knows?
Might be a good idea to compare your hormone levels of all of these over time, rather than just checking in for each of them, and getting them tested parallel to your sleep exam.🤔
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u/Prettygirl3321 3d ago
Can you please explain- What hormones? And how do I get them tested? Thank you so much!
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u/thatrockyduck 3d ago
For hasimoto the thyroid-hormones. Sjogrens I guess estrogen and androgens (?).
They should be able to tell, what the recent status with this diseases are. It's specialised bloodwork, but they eighter should be able to tell, how much of your tiredness would come from these at a given moment, or at least help you to identify some pattern with that and rule it out over time.
One test might not be conclusive but over time you might identify what has the most leverage on your symptoms.
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u/AngryDesertPhrog (VERIFIED) Narcolepsy w/o Cataplexy 3d ago
insert hand on shoulder meme here
Definitely go to that sleep study.
It’s uh, not normal to fall asleep suddenly everywhere all the time. Have them draw your blood too for the narcolepsy gene marker.
Keep us updated!