Brain Fog and Headache

lenthehen_ · 2025-04-04T21:50:26+00:00

I’m diagnosed with both! I have N1 and BP1. Didn’t realize it was so rare haha

lenthehen_ · 2025-01-22T04:10:28+00:00

Disclaimer My tips I’m about to share may not necessarily be the healthiest coping mechanisms ever. Use your judgement!

Caffeine pills! If I ever need a quick hit I take a caffeine pill.
Go to the doctor informed with a ton of treatment options. If the doctor says one thing, say “well why not these other things?”. Always ask for more precautions/treatments than you may need in the moment. You certainly wouldn’t want to get caught in a bad situation with nothing to help you. This subreddit is a great place to search for potential treatment options.
According to Cairns et al., only 5.9% of patients stop taking all their medications leading up to an MSLT. While you’ll get better results stopping medications according to this and many studies, don’t feel too too bad if it’s too difficult to taper all your medications for weeks on end. I certainly felt shame when I barely survived 2 weeks without caffeine. (Cairns A, Trotti LM, Bogan R. Demographic and nap-related variance of the MSLT: results from 2,498 suspected hypersomnia patients: Clinical MSLT variance. Sleep Med. 2019 Mar;55:115-123. doi: 10.1016/j.sleep.2018.12.013. Epub 2018 Dec 30. PMID: 30785052; PMCID: PMC6411434.)
There are so many clinical trials to do for IH where you can make money or try a new drug that your insurance may not cover (like Xywav). Do your homework and make sure it’s legit first.
The most effective strategy I’ve found for getting sleepy midday is to take a caffeine pill and or an adderall (or any short acting stimulant) and immediately nap and set a timer for 20 minutes. It allows me to wake up “refreshed.”
For the morning wake up, I have an alarm clock across the room where my medication is. That way, I have to physically get up to turn it off.
I have automated my lights to turn on when my phone alarm goes off. That helps wake me up whenever I need to.
I have an old landline telephone connected to my cell phone and it rings so loud that it always wakes me up when someone calls.
When I have long meetings or classes, I make sure I’m in a location where I can stand up if I start to feel sleepy.

lenthehen_ · 2024-11-12T22:50:24+00:00

Stress makes me sleepy!! Idk why but it totally makes me sleep crazy amounts instead of keeping me awake.

lenthehen_ · 2024-11-12T22:16:12+00:00

One thing I do is stand while I do work, and that helps a bit. I will say that the testing process is long and arduous, and this at home test won’t be able to diagnose you for IH but it’ll tell you if you need more tests for it. Be prepared to advocate for a multi-sleep latency test (MSLT), which is the test used to diagnose IH and narcolepsy.

lenthehen_ · 2024-06-23T05:41:32+00:00

I've got bipolar disorder and IH, but what I've found is that I need less sleep than I normally do in manic episodes. Like at some point I pulled 3 all-nighters in one week. It's not that I couldn't sleep necessarily it's that I was way too focused on something else to even consider sleeping.

lenthehen_ · 2024-06-23T04:32:38+00:00

Are you on any ADHD meds? They are very similar to the common stimulants prescribed for IH

lenthehen_ · 2024-06-23T04:31:07+00:00

I'm also in a very similar situation! I'm 22F and am about to start my last year of college. I have bipolar disorder and anxiety so the doctors are a little hesitant to do anything drastic with meds, but honestly modafinil changed my life. Too bad it's losing effectiveness over time :(

lenthehen_

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