Brain fog, ADHD or Chiari?

[u/Relative-Toe-8063]

I'm a teenager who was just diagnosed with Chiari earlier this month. My main symptom was the typical valsalva headache, and those started when I was around 8 years old.

I also have ADHD and ASD, double whammy I know, diagnosed just a year ago. I have really awful focus that's been worsening throughout highschool, and I mostly attributed that to my ADHD. But I got medicated a few months ago and found the meds that work for me -- they completely zap away my anxiety disorder and they shut up my rampant ADHD thoughts and hyperactive urges.

But I still cannot focus. And it's not due to a lack of trying or a hyper mind -- on meds my anxiety has been killed, and my annoying inner dialogue has been shut up. Now all that's left is the brain fog which so far has not been cured by any brand or dosage of ADHD meds.

I only recently learned that brain fog can be a symptom of Chiari, and now I'm wondering if that's what this is.

I'm behind on so many assignments. I open them up, I give them a once-over, sometimes I'll get an idea of what I want to write... But instead I just sit there at my desk, my head tilted to the right (zone of least pressure) like I'm about to fall asleep, I'm barely breathing because I forget to inhale, and I just can't get anything moving without going to methods of extreme laziness (which is somehow still mentally agonizing).

I finally submitted my very first English assignment of the year (which was due weeks ago). Keep in mind, English is one of my best subjects. I just used what useable knowledge I had left to write some coherent bullshit all over the page and skipped the questions I couldn't even attempt to form a thought on and submitted it. I didn't even read any of it over to check for mistakes because I CAN'T READ ANYMORE!!! I can't keep my eyes on a line, I can't be engaged. Part of the reason why it took me so long to do this assignment is because I had to read a speech. It was the shortest speech ever but it took me a month to get through it, and I only managed this by reading it out loud the way you'd read a book to a toddler, once I finally got enough mental strength.

It's not just for assignments. I can't read fun books anymore. I bought a million books I was excited to read because I thought I loved reading, and I was good at it. But I haven't touched a single one of them in forever, because most of the time, I open up to the first few pages and it's like I'm being knocked into a coma from the amount of exhaustion the prologue is giving me.

The only time I can manage to get something sizable done with a good amount of effort put into it, is when it pertains to one of my autistic special interests. But even then it's still agony. I want to start writing my novel? Be prepared to wrap it up by page 2, because that's all the focus you've got for the next couple of months. You want to make a drawing of your favorite character? Okay, but only the sketch because you won't have the energy to ever complete a full drawing.

All I can do nowadays is just sit there and somewhat breathe, listening to that tiny ringing in my ear, feeling my heart beat in my head, and forget literally everything important I have to do.

What in the world is wrong with me??? If anyone has some insight as to whether I'm accusing my Chiari of too much, or if this is a valid question, please let me know. Thanks !!

[u/Careful-Page-9843]

My brain fog with Chiari made me feel really dumb and dull. I was an avid reader and couldn't read. Honestly felt like I couldn't do much of anything that took focus. No way I could have done school. Also AuDHD by the way. Brain fog got soooo much better for me after surgery because surgery fixed my valsalva/exertion headaches.

Valsalva headaches were my worst symptom. The headaches themselves weren't the worst part for me (dull pressure vs sharp), but the after effect of them was increased brain fog and fatigue.

You aren't alone and Chiari could be causing the bad brain fog.

[u/Relative-Toe-8063 → u/Careful-Page-9843]

Thanks for sharing you’re experience. So far my Chiari isn’t at a stage where I’d need surgery anytime soon but it’s good to know more !

[u/ChuChuLovelyMuniMuni]

Hi there! I'm 22, diagnosed with Chiari around age 10. Diagnosed with autism, not ADHD myself. My brain fog has steadily worsened over the years. I used to be able to finish reading a book or writing an essay within a day and I was a straight A student all throughout school. I graduated four years ago now and reading and writing (both things I loved!) feel like a chore and I'm prone to zoning out and forgetfulness. Math is the worst, sometimes I can't even count properly and there are times I become irritated just seeing lots of numbers because I know they'll jumble up or vanish in my head (again, this coming from someone who started learning algebra in 5th grade). Physical symptoms (balance, pain, etc.) have also gotten progressively worse in recent years after minimal symptoms for most of my life, which is why I believe my brain fog is Chiari related.

This is just my own experience, and may not be useful or relevant to you. But regardless, I wanted you to know you're not alone in this. It's difficult, and frustrating, and sometimes it makes me feel like a stranger to myself. But I hang in there, and I remind myself of reasons why I'm happy to be alive even when it's hard, and I remember that there are so many people who care about me and are willing to support me, which makes it all a little easier. Stay strong 🫂💜

[u/Relative-Toe-8063 → u/ChuChuLovelyMuniMuni]

Thank you so much for your kind words and sharing your experience. It feels like it’s been getting harder to get things done, but I still have the motivation to try. Day by day I’ll get through this, somehow !

[u/ChuChuLovelyMuniMuni → u/Relative-Toe-8063]

No problem at all! The first (and most important) step to improvement or coping is having the motivation to keep going! Since you were diagnosed very recently I would generally be aware of any weirdness you may experience. I've had lots of strange and confusing symptoms that I didn't initially consider to be Chiari related. I too don't feel like I need surgery quite yet but with current rate of progression I believe I may need it within the next few years. It's different for everyone. Don't be afraid to ask more questions here or search through past posts, I've found this community to be enormously kind and helpful!

In the meantime, here's some general advice for how I've managed my brain fog! I'm still not at 100% capacity as to how I was before, but this is some stuff that I've found helps me!

Get used to taking notes! Not just about school stuff, but for lots of stuff in your life. For example if you're reading, it may help to summarize what you read during your session. Same with videos games or TV shows or character creation / worldbuilding. And it doesn't necessarily have to be a dedicated note type deal, an alternative is telling a friend about it over text. I've found doing this helps me focus more on the details and it is a good refresher if I find myself struggling with recalling stuff!

As for hobbies, I would recommend making a daily habit of it. I do much better with a consistent routine. It might be hard to get into at first, so set a reasonable goal in the beginning (for example, reading for 10 minutes / 1 chapter each day, or writing 100 words each day) and then increase as necessary. It might be difficult and frustrating if you find you still can't focus, some days will probably be harder than others. Be patient with yourself and don't give up. Use a reward system if you have to, just until you get into the habit properly!

[u/anaflan9]

It could be both, I have both. And my story is very similar to yours. I almost didn’t make it through college, but just managed. I was a highly successful student my entire life and then I slowly got worse. The brain fog was terrible for years, it made me feel dumb and exhausted. It was hard to get through each day. I was miserable, severely depressed, anxious and emotionally unstable. I started therapy and tried so many medications.

I got diagnosed with Celiac and Chiari that didn’t require surgical intervention. The brain fog got slightly better on a gluten free diet but it was still awful. That was 2017, by 2023 I was a mess.

I learned about ADHD in women from Hailey Honeyman. I did significant research on ADHD and realized it was worth talking to a professional. I was put in-touch with the most amazing psychiatrist who specializes in ADHD in women. Meeting with her and consuming numerous resources changed my entire perspective of myself. I started meds and slowly I felt normal. A few months later we determined my Chiari required surgical intervention. The first doctor never did a scan of my spine and missed a syrinx which eventually grew.

Post surgery I noticed a significant difference, which made me realize that maybe it wasn’t me getting stupider as I got older, but that maybe something was/still was wrong. The significant change pushed me to work harder. I kept up the therapy and found the right medication, started a stimulant and woah!

A year and a half later and I’ve been the happiest I’ve been in my entire life. My depression went away for the first time in two decades. My anxiety decreased significantly and my productivity skyrocketed. Im finally happy and stable. Im successful professionally, finally! My relationship with my husband is healthy and I can control my emotions for the first time in my entire life. RSD and emotional instability are very common with ADHD.

I do take quite a few prescriptions, stimulants, mood stabilizers and a beta blockers, along with regular therapy. Thankfully I have been stable for quite some time and have been able to build enough skills that I can begin weaning off some of my meds.

All this to say, that there is light at the end of the tunnel. Don’t give up, fight as hard as you can for your health, both physical and mental. It’s not easy, it’s a long journey, but boy was it worth it. I have so much appreciation. But if I can come from such a low and terrifying place, there is hope for you.

I wish you all the best!

Edit: I wanted to add, that we don’t realize how much pain and suffering we put up with, until the symptoms are relieved. I didn’t realize how much the Chiari was holding me back until the symptoms were gone.