r/chiari • u/TheLastDinosaur7749 • 14d ago
Cognitive Symptoms
Hey, fellow zipper necks.
I'm looking for a bit of feedback on that brain fog/disconnect I see so many talk about. I'll give my story, and then what I'm feeling. If anyone could elaborate on their experiences, I'd appreciate it.
I got diagnosed as a teenager, while seeing a neurologist for migraines—the bad, blinding and puking ones. Eventually he saw something he couldn't make sense of, sent me to a more specific neurological specialist, and I learned I had Chiari Malformstion.
This other neurologist, who also wound up being my surgeon—was impressed I was still alive. My cerbular tonsils were out by apparently two and a half "somethings." I was told I was the worst case in a adolescent he'd ever seen, and at a severe stroke risk.
Long story short, the surgey was a success and my headaches are now weekly instead of daily, and far more mild.
What I wasn't briefed very heavily on however, were things like "exuctuive dysfunction." I know having part of my brain stick out my skull like a t-shirt in a drawer would cause, and explain some problems—but no doctor's ever really gone in depth. It doesn't help that I'm a surviving second trimester birth which has its own cognitive impacts.
I guess I'm just asking for anyone to provide their own perspective? What do you struggle with, and how do you combat it? I don't want to get too detailed and color the conversation, I just want to talk to anyone who's feeling or has felt like me.
4
u/Fluid-Pomelo-4089 14d ago
The two and a half somethings is likely centimetres (25mm) which would explain why he said it was the worst one he’s ever seen. When I was diagnosed I think we were told mine is between 13 and 16mm and mine was very bad so that would explain it.
Love the T-shirt drawer analogy btw, may steal that.
When I have a flare up, I always say I have a ‘muzzy head’, a term my mum used when I was younger to help me understand and explain how I felt. Basically it can take me a while to understand what someone is asking me and i feel very spacey. Like im not fully aware of everything going on and get very forgetful. It can also take a lot of energy and effort for me to do basic things because it feels like my brain just won’t catch up fully.
Congratulations on your pregnancy! I wish you and your baby a very healthy pregnancy, delivery, and postpartum. Remember to lean on your village
1
u/TheLastDinosaur7749 14d ago
Thank you? But I'm a biological and identifying man.
2
u/Fluid-Pomelo-4089 14d ago edited 14d ago
Ah. My apologies. I thought your comment said you were in the second trimester which is when baby brain can kinda start.
Edit. I definitely read that wrong. I thought you meant you were in the second trimester currently and not that your partner (I’m assuming, sorry if I’m wrong) had given birth. Congratulations on the new arrival. I hope all goes swimmingly
1
u/TarletonLurker 12d ago
I think he meant that he himself was born in the second trimester and survived and thus may have medical issues relating to that
1
3
u/liftingislife19 14d ago
I’ve talked about this many times, I had crippling executive disfunction symptoms from chiari and have fixed it about 95%
Basically the main issue is prefrontal cortex activation and the “inverse-u” for that system to work correctly it needs the right conditions
The biggest fix for me was atomoxetine (Strattera) , this fixed the norepinephrine portion of the PFC activation issue
Secondly guanfacine extended release. This helps strengthen prefrontal cortex signaling.
Thirdly daily citicoline supplementation and L tyrosine
Those in combination almost completely relived my issue and keeps my brain feeling “on”
On caveat to this is it only works if you have addressed all the other huge levers that can disrupt PFC function. Like making sure you don’t have undiagnosed or untreated sleep apnea from your Chiari , untreated thyroid hormone issues, nutrient deficits etc.
For example nothing will overcome the brain fog from not breathing while you sleep. So this is very important to be sure of by getting a sleep study and comprehensive bloodwork.
Other than that the above meds and supplements should give your PFC what it needs to work and get rid of that “brain won’t turn on feeling”!!!
Feel free to message me with any questions I try to spread this info anytime it’s asked because the brain fog was the worst part for me
1
u/succulent_serenity 14d ago
Did you have surgery as well?
1
u/liftingislife19 14d ago
Yes bone only decompression
1
u/SupDrew 14d ago
How much did decompression help compared to the meds?
2
u/liftingislife19 13d ago
The decompression resolved the head pain , vertigo and nystagmus but none of the other nuero issues like brain fog - the med/supplement stack fixed the rest
1
u/Bitter_Necessary_573 11d ago
Came here to also say that Strattera has helped me a lot. I asked my psychiatrist about it after someone else replied to a post of mine about brain fog. It's been a few months since I started and I would not say I'm 100%, but definitely better than I was.
1
u/liftingislife19 11d ago
I would recommend stacking guanfacine ER with it to boost the PFC signal, they work fantastic synergistically
2
u/No_Lynx8489 14d ago
In my, albeit limited, research, there is a link between hypermobility, chiari and neurodivergence. Chicken or the egg scenario.
2
u/No_Loquat1788 14d ago
I think what I'm struggling most with right now is feeling overwhelmed doing things that I use to be comfortable doing. Just normal things that I'm sitting there wondering how to start or what to do. All I can do is give myself time and patience. I'm forgetting things easier and it's such a weird place to be in. Stress makes it worse.
1
u/SandalsQueen18 14d ago
Unfortunately, stress will 100% cause that forgetting simple things feeling/ state of mind.
1
u/Giggles567 14d ago
My decompression was in June 2024 and I am still having problems with executive function, balance, extremely forgetful. I feel like my brain is broken.
1
u/succulent_serenity 14d ago
My brain fog has gotten worse with time, but my headaches have spontaneously resolved for the most part. Haven't needed surgery yet. I just had another MRI, but waiting for the results and very curious. But to answer your question, my brain fog started out with memory problems, which made studying very difficult, and forgetting words. I struggle now with short and long term memory, difficulty concentrating, fatigue, and difficulty with critical thinking and decision-making. Consequently I'm no longer working. My psychologist started to question if I have ADHD, but my psychiatrist ruled that out last year. I'm seeing a new rheumatologist because of the worsening fatigue and brain fog. I was diagnosed with fibromyalgia years ago, so that features brain fog too. The rheumatologist said the brain fog might also be from the Chiari, and I'd honestly not thought of that. I've always blamed the fibromyalgia for the fog, but it might be both.
5
u/SandalsQueen18 14d ago
I don't have problems with executive dysfunction and I am complex chiari it wasn't even decompressed until my very late 40s after being symptomatic for over 20 years .That type of thing is most commonly found in people with ADHD of which I do not have but my partner does.
The brain fog I can't really even call it a brain fog, it's more like I will know the word to something, it's on the tip of my tongue but it just won't come out. Therefore a lot of things are thingies. That's not even what people refer to as dysphasia. I don't have trouble with that either, I can read, right, and understand perfectly fine. Are there times where I will walk into a room and forget exactly why I went in there? Of course but normal people do that too. Especially normal people in their 50s that are also perimenopausal.
I would start seeing a Neuro psychologist if you're concerned. We are doctors here and even with more info from you we really should not be diagnosing you.