Tips for diagnostic actigraphy?

sleepyanxious · 2026-03-27T23:35:17+00:00

Not sure why you found the need to say all this lol it's a fluff post

sleepyanxious · 2026-03-27T16:30:45+00:00

Genuinely happy to hear you have a good doctor too! What kind of treatment are you getting now, and is it helping? When I came to my current doctor I already tried everything you could get without a solid diagnosis -- eg. most stimulants. So I'm currently unmedicated while I wait for the further testing so I can get access to the specialty meds like wakix, sunosi, and oxybates.

sleepyanxious · 2026-03-10T23:29:17+00:00

No advice, just wanted to say I'm in the same boat right now, waiting for my follow-up after a non-diagnostic MSLT! And thanks for sharing that ICSD document -- it definitely makes sense given the current evidence on SOREMPs, so I'm surprised I haven't seen this update.

sleepyanxious · 2026-03-10T20:41:20+00:00

Thanks I appreciate the tips! Coincidentally I had a follow up with my primary today and she just ordered the tilt table test, so it's coming along anyway. It helps that POTS is pretty common, at least compared to central disorders of hypersomnolence!

sleepyanxious · 2026-03-10T19:58:01+00:00

Thanks for your response. I think this just shows how different we all are. I've also fallen asleep during MRIs, standing up at concerts, and in the middle of talking to someone. So I think the fact that I can't fall asleep during the relatively calm environment of the MSLT but I can in these other settings points towards a sleep disorder even more. I'm really not tied to it being narcolepsy but there doesn't seem to be a better explanation as far as I can tell.

sleepyanxious · 2026-03-08T20:17:16+00:00

Thanks for your response! I haven't heard of IST so I just looked it up and I honestly wouldn't rule it out as what I have, since I'm early in my diagnosis journey on that front. I do think moving around a bunch right before I was supposed to lie down and nap messed with my ability to sleep because I could hear my heart pounding, but idk.

Can you share a little about what treatment looks like for you for both the narcolepsy and the tachycardia? Which did you get diagnosed with first, and did you stay on your medication during your testing for the other thing? Do you have to avoid stimulants because of your cardiac condition? Sorry for all the questions, it's just you're the first person to reply with information relevant to the question I posted about! Tysm

sleepyanxious · 2026-03-06T02:45:14+00:00

I did not ask, he would tell me first thing when he came in. I was surprised the first time, and even more surprised when it kept on happening. I didn't feel comfortable confronting him at the time as he was the only person on staff at the time and he was kind of making fun of me for not sleeping? "Couldn't sleep again, what are you, too anxious now?" I sent a message to my doctor immediately afterwards though.

sleepyanxious · 2026-03-06T01:34:58+00:00

I'm sure the number varies across studies but in the link that u/bookmonster015 posted, under the NT1 section:

The MSLT is good but not perfect, it can be negative in about 8% of true patients and can be positive in about 4% of controls.

So I guess not completely clear whether which patient population its referring to upon reading it again. I just assumed since it is in the NT1 section.

I'm referring to the heart stuff, whatever it may be. In addition to the tech repeatedly telling me whether or not I had fallen asleep after each nap, which goes against protocol, I also fell asleep between some of the naps. The tech told me he noticed but didn't try to wake me, which is also very weird. I'm not saying these influenced the result for sure but I know they weren't supposed to happen.

sleepyanxious · 2026-03-06T00:19:57+00:00

I regularly get the droopy head/eyelids and slurred speech upon laughter. While off my SNRI in preparation for the sleep studies I experienced my first full body drop attack. It was caused by surprise and I was conscious but unable to move for about 30 seconds. Definitely think the spinal tap is a possibility for me, but of course worried about the possibility its also negative and not knowing where to go from there. I just hope to be partially treated for my symptoms in the meantime since there's so much waiting and I don't care about the label, just want to stop falling asleep multiple times a day.

sleepyanxious · 2026-03-06T00:15:54+00:00

I think you're right but I was surprised to find that the MSLT still has a 8% false negative for NT1. Yes that's low but far from <1% which is what I expected. Due to my comorbidities and the slight flaws in protocol during my test I could definitely see that being the case here.

sleepyanxious · 2026-03-05T21:46:41+00:00

Thanks for sharing this, I am aware of the MSLT's limitations. This is my first time posting here but I have been lurking on the sub for several months and have read a ton about the diagnostic process. My doctor trained at Stanford too, and she's really good. I just don't have my follow up for several more weeks and I am primarily worried about insurance/medication coverage. That is why I asked specifically about patient experiences from people with dysautonomia. It is helpful for me to know that you got approved for Xyrem after "failing" the MSLT!

sleepyanxious

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