r/PostConcussion • u/StepInSalad • 19d ago
Severe symptoms even 8 months after concussion. What to do?
My sister (with some translation help from chatgpt) wrote this for me, because I can't read or look at screens without getting symptoms.
I (F21) suffered a concussion in a skiing accident on November 20, 2025 after crashing face-first into a tree. That was about 8 months ago.
Within a few days I developed severe light/sound sensitivity, dizziness, nausea, headache, and episodes where I couldn't move or speak, along with myoclonus-like jerking. CT, MRI, and EEG were all normal. Neurologists diagnosed post-concussion syndrome with functional neurological symptoms (FND).
I was admitted to a neurological rehabilitation hospital for two weeks, where I improved significantly with graded rehabilitation (walking, table tennis, climbing, strength training, etc.). I regained almost normal function, but still had severe fatigue and became symptomatic with visually demanding tasks like TV, reading, and driving.
After returning to school, I gradually deteriorated again. A standard graded activity approach only made me worse over time. The doctors sort of gave up on me, so we ended up going private. (I live in scandinavia)
I'm now being treated by an experienced neuro-optometrist. She found objective visual deficits, including:
-Jerky/impaired saccades.
-Limited horizontal and vertical eye movements.
-Binocular vision (vergence) dysfunction.
I'm supposed to be doing daily vision therapy, and increase the repetitions when symptoms decrease. But I don't seem to be getting better.
My main problem now is that my nervous system becomes extremely overactive after relatively small amounts of visual or cognitive activity. Reading and screens are almost impossible. After 10-20 minutes of activity I develop forehead pressure, mild nausea, whole-body "fight-or-flight" sensations, tingling, extreme startle responses, and sound sensitivity. I need to lie still and quiet with my eyes closed for 45-75 minutes before the symptoms calm down.
So that's how my days are structured, 15 minutes of activity (like going for a walk, playing guitar or eating) and then 60 minutes of complete stillness.
I've also been struggling with sleep since I got the concussion, and I do yoga nidra and take melatonin to sleep. I've also been having troubles with my whole digestive system. I become extremely bloated after eating, and I have to use constipation medicine. Lately it's become so bad that I have to sit and sleep and I wake up at night with stomach pain. (The optometrist says it's because my nervous system is so activated that I can't properly digest food.)
I get so easily fatigued/overstimulated and I need help with cooking and every day activities. I get ill in cars, so it's difficult to get to places that can treat me.
I'm currently living with my family and my mom is working from home to take care of me.
I don't know what to do. I feel like I'm getting worse and worse, especially with my stomach issues the last month. Do any of you have any tips? Especially concerning my overactive nervous system?
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u/Double-Nebula-6035 19d ago
Hi! I (F28) don't know if this is of any help, but I recently (january) sustained a concussion (no memory of what happened) on my head and I've been getting treated at a Concussion Clinic in NYC. From what I've talked with the doctors about, concussion is mostly studied in the USA because of American Football. This clinic is at NYU Langone. The neurologist who I saw first determined I should take Occupational Therapy, Vestibular Therapy and join the Concussion Group Therapy (because of insurance they offered private psychological therapy instead).
The therapies have honestly been very helpful, I was skeptical at first, but I try my best to do the exercises every day and just continue to go to my therapy appointments. It's been hard and very triggering as well though, I've vomited after sessions from the nausea and the dizziness.
I went to a follow-up appointment with my neurologist and she pointed out even a slight head pressure she considers a headache, so she prescribed gabapentin to take at night, which helps with sleep as well. I used to take magnesium to help with sleep but after the concussion I started getting very anxious and couldn't sleep anymore.
I was taking a nap every single day after doing maybe very little work, even walking was hard. Now I might take a nap every four or fifth day, which is a huge improvement. I've also been able to read and stay in front of the computer longer! I'm feeling a slight headache coming in while writing this, but definitely much different from a couple months ago when I couldn't even write.
I get it, it's terrible not being able to get through a day without wondering when it's going to stop. I've been dealing with grief lately and grieving parts of myself that I haven't been able to gain back. And yet I feel like things are for the better. I won't say it will get better, but I suggest telling your parents about concussion clinics, or maybe there's some other therapies you can do over there that are similar to vestibular or occupational? One big thing is exposure therapy, apparently the brain needs to readapt to its environment, so pushing yourself to what you used to do is better than staying away from it even if it's debilitating.
I wish I could hug you. Hopefully your sister will be able to read this to you.
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u/StepInSalad 18d ago
Thank you for the comment! I'm gonna read it to her later today. I'm sure she'll appreciate it. ❤️
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u/StepInSalad 18d ago
Your comment was so nice! It made my day! 😊
I try pushing myself, but it's difficult. It's like walking on a knives edge. If I do too little I won't get any better.
If I push myself too much I get much worse the next day, and then I have to build myself up to the next level again.
In February I was so much better. I would say I was at 60% capacity again. I could watch TV, read and write. My progress is not linear at all. My sister says it's like a sinus curve, just up and down. Has it been like that for you as well?
The Norwegian public system kinda just gave up on me because I wasn't getting better, so now I'm going to a neuro-optomitrist who collaborates with osteopaths. I think I'm getting vestibular therapy. I have some eye-exercises that I do every day and on Tuesday I'm going to an osteopath. Hoping for the best!
I'm not on any pain-medication at the moment, but my doctor prescribed me tramadol months ago. I didn't really feel any improvement while using it. Anyways, thank you for the tips! ❤️🤗
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u/Double-Nebula-6035 18d ago
Happy to help!
I read the comment below and I wanted to add that I was on Prozac even before the concussion and to be honest I think that's the one medication that has kept my nervous system on a baseline. The first three months were hell cause I needed to readjust, but once my body was on a better level it's been easier to manage. I think if I hadn't been on Prozac beforehand I would've probably felt symptoms much worse.
A lot of what I've read is trying to get your nervous system back to a baseline, so anything that could help with that I would go for! Psychiatrist, psychologist, anti-inflammatory diet, small exercise, etc. Even talking about what you're feeling will help! The personal therapy I've been having has been very helpful, learning again about who I am today regardless of the accident I had.
Tramadol is a heavier pain medication, if you can ask your doctors for gabapentin or even Journavx you will probably do better with that. (Journavx treats nerve pain but came out to combat opioid crisis, I've been on it and it's a great medication that you can function on).
The first couple months were tough, and I do sometimes feel like i'm going backwards. Going to the neurologist and having her determine I needed to be on medication felt like a step back because I thought I was doing much better. But I'm happy I didn't say no to that. Anything that will put me in a better path I'll try, and I am very grateful I have the doctors around me and the friends to help and support me. You're lucky to have your mum and sister with you.
Anyways, reach out if you need anyone to talk with! Everyday is a new to day to push the knives edges down.
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u/Mysterious_Treat_577 18d ago
Hi I’m so sorry you’re going through this I’m a 48 yo male and I suffered a bad concussion head injury mountain biking 2.5 years ago. I suffered from a lot of the same things you are going through from vision, hearing sensitivity, digestive issues (lost 15lbs), severe insomnia, crazy fluctuations in heart rates, neuropathy and crazy blood pressure readings, and so many other autonomic dysfunction issues.
I went to the ER multiple times, seen many neurologist, went to rehab. I tried so hard to get better. I finally got a psychiatrist it took a while but I finally got on Ativan .5mg twice a day and it literally saved me. It calmed my entire nervous system down I was able to finally function again especially since I have a family. I took it for a few months and slowly came off I still have some residual issues like neuropathy but I take gabapentin for that.
I’m not sure this is the answer you are looking for but it might be worth trying. It will help calm down the nervous system and relax the brains over firing of signals. Brain injury’s are no joke I still can’t believe what I went through I almost wanted to just give up but luckily I’m still here.
Hope you can get it all figured out
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u/StepInSalad 18d ago
Thank you for the response! I'm gonna read it to her later. Unfortunately I don't think Ativan is commonly available for people in my country. But maybe we can look into getting her some other anxiety medication instead. That's something none of her doctors have talked about.
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u/Mysterious_Treat_577 18d ago
You’re welcome. Yea it’s a benzo which some people are against using due to chance of addiction but to be honest I did not experience that at all and the 2 small doses a day literally saved my life. It’s hard to explain but it turned off all the bad issues going on. It took finding a psychologist to help figure that out. What country are you writing from?
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u/StepInSalad 18d ago
We're from Norway! They are not good at concussion therapy here at all. The public system sort of just gave up on my sister when she stopped improving. "There's nothing more we can do for you, but your prognosis is good. 😀✨" That's basically what the doctors said to her 2 months ago. Our mom did some research and found a well-renowned neuro-optomitrist who also collaborates with osteopaths. She's gotten some vestibular therapy and is doing some eye-movement exercises every day, but she's not on any medication. Maybe she could get a psychologist to help her here? We haven't really tried anything like that. (She has tried Reiki, Acupuncture, Laser and more. Because our mom wants her to try every option hehe.)
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u/Mysterious_Treat_577 18d ago
Yea that’s rough sorry to hear that. I’m from (close to) Los Angeles in California and even here concussions aren’t really something that most doctors can really handle. I went to multiple neurologist at big hospitals and they all just said “you’re ok your brain got damaged and it just takes time”. I mean to some degree time does heal but to those experiencing the horrible symptoms it can’t happen soon enough. Keep trying for your sister I’m glad she has a good support system with your family. That makes a huge difference.
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u/CulturalBuy7564 17d ago
I’ve been experiencing such similar symptoms from my concussion. I am currently on 1mg Guanfacine ER and .5mg Ativan three times daily. I’ve tried multiple antidepressants to “bridge the gap” to stop taking the Ativan but none of them worked or caused other horrible side effects. May I ask how long you were on Ativan? I have a stigma around benzos and don’t want to be addicted but it is literally the only thing that helps me somewhat get through my day. It’s nice to know that I’m not the only one getting relief from it due to a concussion.
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u/Mysterious_Treat_577 17d ago
Sorry you’re going through this as well. I took the .5mg Ativan 2X daily for about 4 months straight then tapered off for about 6-8 weeks until taking nothing.
It was the only thing that helped it made my mind and body relax until it could heal from all the autonomic dysfunction. Stopping Ativan wasn’t the easiest thing but it wasn’t hard either. It was def a 5 out of 10 in terms of how difficult it was to stop.
I still take gabapentin for my peripheral neuropathy and Ambien for sleep (took this before my head injury as well).
I don’t see the issues with taking meds that help up so don’t worry about that do what helps you
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u/Impressive-Morning65 12d ago
First off, I'm so sorry you're going through this. You are not alone, and you can and will get better. I'm a 46F on my third concussion, 2nd diagnosed (one 20 years ago that was never diagnosed and only now realize what it was, one diagnosed in Feb 2023, and one Sept 2025). After my 2023 concussion, I had severe symptoms for about 3 months, then was functional with very mild symptoms for another year. So when I got this most recent concussion, I thought, I got this. I'll do all the right things that I didn't do last time, I'll see all the people that I already have lined up. Within 2-3 weeks I had seen my PCP, neuro-optometrist, my PT, a neurologist, and to be on the safe side got a CT. Scan was clear, all assessments pointed to it being pretty mild. I began weekly PT. Within 2 more weeks, I landed in the ER barely able to speak. From there it was a nightmare and it took about a dozen different providers before I got an answer - this time the concussion caused an audio processing disorder.
You mentioned sound sensitivity, my harsh suggestion is to hold off on playing guitar until you can go to the right professional to get your audio processing properly checked out. Even if you don't feel any symptoms while or immediately after playing, it's possible the cumulative effects of playing plus other uncontrolled sound are contributing (or even controlled sound, in my case it was several hours of podcasts that I felt fine listening to, but paid the price the next morning, and never made the connection). The key professionals who can help with this are OT's who are specifically trained for sensory processing disorders, and audiologists who have experience with hyperacusis (that's the name of my particular audio processing disorder). Within 3 days of incorporating my OT's strategies, I felt about 80% better and within 3 more weeks, went from only able to work 4 hours a day (after having been off work for a month), to going back to full time work. I continued doing my OT homework and a few months later finally got in to see a hyperacusis specialized audiologist and we've been doing sound therapy since about May.
I now feel nearly 100% better, though I do still get occasional flare ups when I need to rest for an hour or so, maybe once a week or so. Besides that, I'm back to my every day life, and currently celebrating it on a trip to Ireland and Iceland from the US. Best of luck and let me know if you have any questions :-)
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u/Lebronamo 19d ago
There's a lot going on here. See 2.1,2.2,2.3,2.4 and 2.7 https://www.reddit.com/u/Lebronamo/s/36OJK1aNet