Is this a weird (unusual) symptom?
I’ve been struggling with EDS for a while now. I’m not diagnosed, but fairly certain that I’m somewhere on the spectrum. While I want to know more, there is one symptom I’m really struggling with, and want to know if this is common in the EDS community.
I don’t know what to call this thing, but I’ve taken to calling it “sleep-quakes” so I can more easily make the comparison to the Richter scale.
There are lighter ones 2.0-3.0 that aren’t very disruptive, they tend to serve as a warning of the larger quakes.
The medium ones 4.0-6.0 can be really disruptive but bearable.
Then the big ones were the 9.0’s which recked me while I was working.
So to describe them they feel like a powerful urge to sleep like pressure forcing me to go to sleep. I would have never thought to describe sleep as violent, but that is what it feels like. A violent pressure forcing me to sleep.
I don’t know how else to describe it, but a lot of doctors seem to think I’m just being melodramatic in my description. I’m not.
I can resist, but it takes a lot of mental and physical energy to do so, and resisting just results in the quakes getting stronger and stronger.
Naps help, when they onset my first thought is how far away is my bed and how soon can I get there.
Stress makes them worse, more stress = more frequent stronger sleep-quakes.
Trying to conform to a schedule also seems to make them worse.
I’m sorry for the long post, but I would really love to know I’m not alone in this. It’s really debilitating and the reason I’m broke and jobless right now. Thank you for sticking with me.
Hi
!
Although I am not a doctor, it sounds like you are experiencing sleep attacks. I actually wrote an article about this if you would like to give it a read.
https://narcolepsy.sleep-disorders.net/living/microsleep-sleep-attacks
What you are describing is not at all a weird or unusual symptom. In fact, sleep attacks are one of the more common things to happen to people with narcolepsy. I would suggest looking in your area for a sleep specialist (check out morethantired.com and you can find ones near you) and having a sleep study done. Keep us in the loop with your journey!
Xoxo/Zzz, GabrielleThank you so much for the reply, and the article was very informative. You mentioned how Narcolepsy is not like it is in the movies, and that was why I waited so long to pursue Narcolepsy as a problem I never knew it could be like this.
Also, thank you for the link. I was originally going for more of an organic apache with my doctors. Explaining my symptoms and hoping we could work together to find the correct diagnosis.
It's become clear to me that the doctors I've been working with aren't interested in pursuing the problem the way I was.
Now I'm being more aggressive about it, and I'm looking for ways to cut through some of the obstacles I've been facing and hopefully get the treatment I need.
I am definitely looking for new doctors who are more interested in listing to my problems and not ignoring me.
I am happy to hear that you enjoyed the article. It took me several diagnoses to finally get a sleep study. Even since my diagnosis, it has taken me a couple tries to find a doctor who cares to help me and my narcolepsy. Being an advocate for your health is very important! Best of luck on your journey to diagnosis!
Xoxo/Zzz, Gabrielle
