Eliminating Brain Fog Success Stories?

[u/foodpile]

Hi! I (22F) was diagnosed with N2 back in February. I've tried a few medications, but none of them did anything for my brain fog and weren't viable for my sleepiness for reasons unrelated to the point of this post. I've tried modafinil, Sunosi, and an experimental orexin agonist.

Brain fog is what I suffer most from and the one I care most about being treated. Especially since I want to get a PhD after undergrad (and I'm a senior). To know what it felt like for my brain to work and to no longer feel it at the ripe age of 22 is beyond devastating. I'm starting stimulants later on this week and hopefully that'll open the door for insurance to ~oh so graciously~ approve my sodium oxybate request. I'm just afraid that I have too high of hopes for the sodium oxybates. I've been banking on those "fixing" or alleviating this brain fog, but I'm terrified that they won't and I'll be stuck like this. My brain was my greatest asset. I used to love school, now it feels like a battle to get anything done and it's so much more difficult to learn things let alone retain whatever I learn. I know that's natural to an extent as you age, but I have no doubt that I've been experiencing cognitive decline (I made a whole post about it if you wanna read that rant lol).

So that brings me to my question: is it possible for the brain fog to be alleviated by medication? If a medication has succeeded for you, to what extent did it alleviate the fog? How long did it take for you to notice that it'd been helping? All of our bodies metabolize drugs differently so I don't expect any specific medications that worked for you to work for me, but just knowing that it IS alleviate-able would go a long way to quiet my brain down with some reassurance that my brain isn't permanently screwed.

Thank you for reading this far if you have!

[u/sleepyposting733]

I am in a clinical trial for the Alkermes orexin agonist and this got rid of the brain fog for me. I am still fairly sleepy and need my daily naps but being able to think straight is a game changer.

I see you tried an orexin agonist. Did they tell you what dosage you were on? Maybe it was too low.

I also noticed some improvement in both energy and brain fog from taking Wellbutrin 

I hope you find something that works.

[u/foodpile → u/sleepyposting733]

I’ve been on Wellbutrin and it honestly didn’t do much for me. Maybe in the future I could revisit and try the 300mg dose instead of the 150. I think they were the extended release but I’m not too sure. I tried the Takeda orexin agonist which did help in that I didn’t have sleep attacks in the 1:00 hour every day anymore (instead they were at random times but less often) and my sleep inertia improved making it easier to get out of bed. So I think I did get a decent dose but yeah maybe it’s a matter of being able to try more than the open label study they’re starting soon would do.

[u/foodpile → u/sleepyposting733]

Thank you for your well wishes and sharing your experience!! :)

[u/mrsprincezuko]

I know narcolepsy can cause brain fog, but your statement about experiencing cognitive decline immediately made me think of long covid. Even mild SARS-CoV-2 infections are known to cause brain damage (along with damaging pretty much every organ) leading to cognitive decline, brain fog, memory issues, processing speed, etc.

[u/alemorg]

Max dose xywav got rid of the brain fog to a certain extent. The adhd like symptoms of being a bit disorganized or not having motivation to do things it really hasn’t done much at all for it. Although I used to think I had hearing problems but when I either took stimulants or oxybates I felt like I could hear and comprehend other people much better. Before without treatment is like nothing I was listening to registered in my brain. I think wakix actually did a great job with it too. There’s definitely better treatments out now but I wouldn’t be too hopeful in having xywav or wakix alone getting rid of it. Some people have to take two stimulants, some people have to take xywav/wakix with stimulants. I think you’ll find a good treatment option it’ll just take some time for you.

[u/foodpile → u/alemorg]

Thank you for your insight! I know it’s a marathon not a sprint, but sometimes along the way it gets really hard to remember that it’ll get better. That’s why I love this community,,, we pick each other up the best we can when we feel the weight of all of us. I look forward to finding the right combo like you said and getting a piece of my life back!!

[u/alemorg → u/foodpile]

I hope you find it too, all of us really. Right now I haven’t found my med combo right now but I’ve tried almost all of the medications. I had horrible depression/anxiety with oxybates but at max dose it almost felt like I took a stimulant but I’ve never felt so present in the world it’s weird.

[u/Alternative_Yak_4897]

It’s possible- yes!

My experience: My brain fog was diagnosed as “dissociation” before I was diagnosed with narcolepsy and afterward. I’m so glad there’s new thinking around this because it shows the symptoms of dissociation can be identical to brain fog associated with sleep deprivation. I’ve always taken klonopin when I feel the dissociation/brain fog strongly during the day - at some point everyday it gets severe. So it’s always been pathologized as a trauma response instead of a very understandable consequence of sleep deprivation. But it wasn’t until recently that my doctor added Ritalin onto my Armodafinil dose that I’ve had a few days when I didn’t feel the need to take the klonopin! As in, no part of body told me “I need help with this sensation.” Which means: it’s brain fog!!! Being stimulated properly (for the time being) does help my brain fog.

[u/foodpile → u/Alternative_Yak_4897]

I really hope it continues to work for you well into the future and I hope I can experience that relief as well! Thank you :)

[u/Alternative_Yak_4897 → u/foodpile]

Oh it hasn’t ! But it DID on a few days so I know it’s possible. My doctor says “the enemy of good is better.” Which is honestly a realist approach to medicating narcolepsy that I appreciate at this point in my life after trying so many things.

[u/MishkaJo]

My daughter is also in university, 21yo, with N2. She just finished her 2nd year. Everyone's path is different, but I do want to share that going onto Xywav has helped with her brain fog. It took 5 months to see improvement though. You should keep your hope!

Like you, she loved school and was so excited. There are so many things she wants to do, but this illness and especially the brain fog, made her have to adjust her expectations. Maybe temporarily. Maybe for longer. Time will tell. She was diagnosed just one year ago, but her narcolepsy started 3 years before, during her senior year of high school. Doctors thought she had anxiety and depression so she took a gap year before university. Turns out, it was narcolepsy, and her brain fog got to the point where she was not able to remember a lunchtime conversation by dinner.

After diagnosis in Sept, 2024, she started out on daytime stimulants - modafanil and then Sunosi. The stimulants kept her from falling asleep, but they did nothing for her brain fog. She feared she would need to drop out of university because it was a daily slog of studying and sleeping. Writing became impossible because she felt like her brain comprised of cobwebs she couldn't untangle. By the end of October, she insisted that her sleep doctor move her onto a sodium oxybate. It took a lot of pushing to convince and get approvals, but in December she started on Xywav. It took 5 months for her to notice improvement in her brain fog. She is hoping it continues to improve, but time will tell.

I think that she is still learning how to live with narcolepsy. How to study at university with narcolepsy. How to deal with the side effects of medication (she has lost a lot of weight- 35 pounds - and has more extreme anxiety). It has been a lot, especially while taking university classes. She found a fabulous therapist to help her deal with what I would call her grief as well as what she calls the PTSD/trauma of what she went through the past 4 years.

I hope this helps and keep your chin up!

[u/Natural_Childhood_46]

Mine only disappeared when my t2n went into remission. Before that, no.

[u/Doggosrthebest24 → u/Natural_Childhood_46]

Yours went into remission? How?

[u/Natural_Childhood_46 → u/Doggosrthebest24]

Flu/concussion in 2016. Got retested twice -2016 and late 2018. PSG was “normal.”

HESS never came back.

Remission happens in n, but is about as rare as winning the lottery.

[u/Doggosrthebest24 → u/Natural_Childhood_46]

So, should I get a concussion? Or does it need to happen with the flu or a specific way to hit my head? Did you have any other permanent/long term problems from the concussion or only the benefit?

[u/Natural_Childhood_46 → u/Doggosrthebest24]

So, no, I don’t recommend concussions. The only memory I have about what happened is sitting on a beach in Cuba, coughing up blood before getting tinnitus and then full deafness. Went off meds (300mg modafinil) for a few days to recovery from it. N symptoms disappeared. Never went back on meds. 

In terms of long term issues, there hasn’t been any. My life is a lot like what it was before n. 

[u/Doggosrthebest24 → u/Natural_Childhood_46]

Did your doctors have any theories about what happened and why it cured N?

[u/Natural_Childhood_46 → u/Doggosrthebest24]

It’s not ‘cured’ as there is no cure. It’s labeled as long term remission because no one knows if it comes back.

I’ve spoken to every major researcher outside of Stanford (Harvard, U of T, etc) and specialist I could find, and the answer has always been ‘sometimes it goes away and we don’t know why.’ 

There’s no money in finding out why remission happens, so it’s like a quirky piece of trivia: interesting but not worth exploring too much into.

[u/Doggosrthebest24 → u/Natural_Childhood_46]

I would think studying this could lead to finding some way to make more people go into remission. But ig it’s just a single case so it wouldn’t tell them to much. That’s super lucky and amazing for you. I can’t say I’m not super jealous and won’t try this method, but I’m not not tempted

[u/Natural_Childhood_46 → u/Doggosrthebest24]

I’ve been saying the same thing for years, as there’s nothing special about me or my case. There should be someway to replicate it, or at least learn something from it. 

[u/peper_moth]

I’m having a sleep study in a few days as my neurologist suspects N2, so ignore this if that makes my advice invalid, but do you eat carbs and sweets? I found that makes my sleepiness and brain fog a lot worse, and I read this seems to be common with narcolepsy. Even eating anything has this effect on me, so only small quantities until bedtime seems optimal. But for medication, I’ve been self medicating with Fabomotizole (a nootropic), it helps with the brain fog within the first week or two. Since it’s a mild medication, maybe it won’t have an effect on people who have already needed and taken heavier meds, but at least it means it’s possible to treat. best of luck

[u/brittamon]

Yes! I find dexamphetamine does the trick for me. I am on modafinil daily but found that whilst I wasn't falling asleep, I still felt fuzzy and dreamlike. I also found it super hard to focus in work meetings.

My doc suggested to take breaks on it though as you can build a tolerance, so I just take it on workdays. Seems to balance out quite well though!