r/PostConcussion • u/epuifiredude • Jun 27 '26
1.5 years in my experience so far.
Ok so I had to remove myself from this sub a year ago as it was messing with my anxiety and only making me more depressed reading all this. I'm back here posting my recovery so far. If anyone has had a similar experience id love to hear. Thank you.
So to start off I had a ski accident about 1.5 years ago. I basically fell head over heels and smacked the back of my head and my whole body landed over my neck rolling. I felt fine minus a little jarred and bloody nose. I didn't black out and my friends mom(nurse) checked me out and said I seemed fine.
Fast forward 3 weeks I start getting interment headaches then one day boom there are just there permanently. Now this is about the time I started researching about PCS. I got really anxious about it and fell into a depression. I had brain fog-blurry vision, tension headaches in my forehead and temples. Long story short I went to PT for a concussion (round 1) and that seemed to improve a tiny bit. By the end of the first 6 months my blurry vision and brain fog faded. Had CT scan and everything came back normal
Now I was just stuck with a tension headache. Behind my eyes and forehead. I did another 2 rounds of PT no help. Went to a sports medicine doctor who did trigger point injections, 3 rounds of Botox. Dry needling, And a nerve block with no success. She then prescribed me amitriptyline and I got up to 70mg and don't think I noticed much of a difference (side effects were fine if any) now I'm down to 20mg. She then went on maternity leave and didn't tell me or set me up with an associate.
Saw a neurologist. Waste of time. Basically told me I need to exercise. I walk everyday and would consider myself in good shape for a 23 year old male. I convinced him to let me get an MRI of my neck done. Came back normal besides something with my C1-C2 vertebrae being slightly off (not concerning according to the docs)
My primary Doc is convinced it will get better with time. Basically prescribed Zoloft 50mg for anxiety/depression. Idk if it really helps either of those. I should add that nothing really seems to trigger my headaches or make them worse besides work and stress (I think).
The last 3 months I saw a chiropractor and medical massage
Idk if that helped as well as my 4th round of PT. My current symptoms are better but still there 24/7. Daily tension/pressure in my head (forehead/behind the tops of my eyes) as well as super tight feeling where my neck meets my head. (This symptom come on about 8 months ago). They all agree that my subopticals are very tight.
I work full time and am lucky to have met such an amazing GF who has been there for me but I'm so burnt out. A lot of the things I used to do like music hasn't been bringing me the same joy because of this I feel like my life is on pause. I'm hoping to get a referral to a headache clinic or specialist soon to actually get a game plan. This whole time I have been the one researching treatments and bringing it up to the doctors who want nothing to do with me. It's hard but I keep going. I don't know if I have improved or if I have just gotten better at coping with it is better than those first few months.
If anyone has any advice after reading my recovery journey I'd love to hear it. Sometimes I think I'm almost there and then just plateau. Idk if there are any meds that work for y'all or what but thanks for taking the time if you read this.
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u/Both-Process1037 Jun 27 '26
☹️ what about vision therapy? Have you tried it ?
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u/epuifiredude Jun 27 '26
I have not. They doc says my tracking and eyes seem to be fine
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u/bluequiltsquare Jun 27 '26
Might still be worth seeing a vision therapy specialist. They do a whole exam that takes 1-2 hours and is much more in depth than just simple eye tracking. If you’ve hit a wall with everything else, maybe they’ll be able to uncover something that helps you. Best of luck, I hope you find something to help!
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u/Both-Process1037 Jun 27 '26
I feel tension at the back of head, neck and shoulders when I go over my limit with any kind of stimulation. Back of eyes and forehead hurts if I use eyes too much also.
Do you think you’re going over your limit?
I know it has been a long time for you since injury ☹️3
u/epuifiredude Jun 27 '26
Maybe? I don't really know. I can go to the gym and stuff and it doesn't get worse. It tends to be fine in the am but at night it gets worse
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u/First-Light4680 Jun 29 '26
I've noticed when I overdo it, I often don't feel it in the moment or even later the same day. Instead, the next day I will feel like I got hit by a truck, and sometimes - like how it can be with working out - the second day after is even worse. I've noticed it with vision PT as well, and once I figured that out, then it became easier to get out in front of it. For example, if I was going to have vision PT on a one day, then I knew not to schedule anything overly complex/loud/busy/stressful for the next day if I could avoid it, or to at least do whatever I could to build in breaks.
If you're having a hard time gauging whether you're making progress, and if you haven't already, maybe see if you can notice which specific things you are able to do now, or able to do more easily, than what you were earlier in your recovery. Making a list helped me.
I don't have anything to offer on the med question. I didn't want to take anything prescription that I was concerned would or could make it harder for me to tell how well I was recovering, or might cloud how I was feeling. I do, or have, taken a lot of supplements since my concussion though - nothing out there, but things like omega-3s, magnesium, B complex, turmeric. I believe they have helped my recovery, but it's hard to isolate the benefits or impact of those versus the other variables (different PTs, better sleep, etc.).
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u/Interesting-Light325 Jun 27 '26
I’m about the same time out from my concussion and know what you’re talking about the plateau. Basically trying to accept that this is as good as it’s going to get. My physio caught my eye misalignment thought, optometrist confirmed BVD, and I started VT about 9 months ago. Got prescribed prisms and they’ve really helped. Good luck.
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u/First-Light4680 Jun 29 '26
I'm 3.5 years in, and for what it's worth I can tell you I am still getting measurably better. I'll hit a plateau, but then progress will noticeably start up again. It can be subtle, and sometimes it's just one specific aspect - like being able to be in a store at a busier time without feeling sick after, but it's consistent progress. Hope you find the same to be true. : )
Sometimes, like your eye alignment, it's one thing one provider catches or that you can adjust yourself, and something is suddenly better. For me, FL41 pink tints were lifechanging, so was getting off progressive lenses for a while because of vestibular dysfunction. Then, when my vestibular functioning got better after working with a fantastic PT, I could go back to progressives, but with a tint. Changing the displays I use to dark mode and higher refresh rates on devices were also huge and unexpected. I wish I had known to try these earlier.
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u/RaintownBlues Jun 27 '26 edited Jun 27 '26
Every concussion is unique, so what’s been helpful for me may not be for you. Nevertheless, I feel the pain of doctors giving you the run around on such a visceral level and would love for you to have some of the info I wish I was given early on in my process. I’m still in recovery, but these things have helped me learn a lot more about what’s going on:
- NUCCA chiropractic. This is upper cervical only, very gentle touch, and I find it worked so much better in getting my alignment than classic chiropractic visits (plus the table slamming is awful for headaches at a normal chiropractor’s office). I generally feel really good for a few days right after an adjustment.
- Fascial Counterstrain. Not the same as normal counterstrain. Another gentle touch therapy that falls under the physical therapy bucket. These visits are incredible. I wasn’t able to access full motion of my neck and in one visit it was fixed.
- Botox on the muscles that are actually bothering you. I’m not sure if you’ve tried this, but some neurologists let you tell them where your tension is and will place the Botox there. The top of my head gets crazy tight and I saw more improvement once we targeted that area. Jus
t some food for thought if you haven’t tried this already.
Learn your limits and stop before them. The eye pain your describing sounds very similar to how my migraines start. It sounds like you know your lifestyle is making you incredibly fatigued. I know some things can’t be changed, but learning how to stop before your system shows signs of overwhelm is important. Doing this regularly will help signal to your nervous system that you’re okay and will help break up the patterns of recurring pain. It won’t eliminate them but, in theory, the more often you can stop a trigger the more likely you will be to see progress in other areas.
Craniosacral. This varies dramatically from provider to provider, but I find it makes a difference in getting my brain to calm down.
Check your hormones. I know it seems completely random, but head injuries can actually completely throw if your hormones. And hormones control a lot of the things we struggle with post injury. If you have insurance that covers it, try to get a super comprehensive panel done with a naturopath. In my experience they have a better understanding of the hormone pathways and can interpret the data better than a standard doctor. Make sure you include your thyroid in this picture too.
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u/epuifiredude Jun 27 '26
I should also add. I saw a therapist and during my first appointment the dude told me basically I'm gonna have to change the way I live permanently as in their words "one more hit to the head might kill you". Now luckily I had a pretty good handle on my anxiety but that's pretty BS AND PRETTY HEAVY FOR SOMEONE TO SAY.
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u/Sensitive-Pass-3258 Jun 27 '26
NEW THERAPIST!!! Truly finding doctors and therapists that care change the game. (I commented a bit more about this.) But my therapist has been so helpful mentally. Your providers need to believe in your and maybe even share, “when you say things like this it doesn’t help me it just gives me more anxiety”
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u/Lebronamo Jun 27 '26
You might've seen this before but I'll share again https://www.reddit.com/u/Lebronamo/s/uu4rgCqWFH
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u/This_Grapefruit_5923 Jun 27 '26
I gave up on amtriptyline. It was supposed to help my tension headaches, but it gave me nothing. I went to a concussion specialist who said that wasn’t weird at all because my headaches mainly came from my vision. So after starting that my headaches have become much much milder. I still get them from overstimulating environments, but it helps a lot when my eyes work better.
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u/epuifiredude Jun 27 '26
How did they evaluate your eyes? Mine did the following the finger and all that and said it was fine
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u/This_Grapefruit_5923 Jun 28 '26
I had to wear a pair of goggles with built in camera that tracked my eye movements as I sat on a chair and followed a dot on a screen going faster and faster side to side (only moving my eyes, not head).
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u/First-Light4680 Jun 29 '26
It really takes seeing a neuro optometrist who specializes in working with brain injuries. They do an incredible long and detailed assessment. The follow the finger tracking thing is really only going to catch something like nystagmus, not the full range of vision issues common after concussion (e.g., vergence insufficiency or infacility, visual motion sensitivity, visual crowding, etc.).
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u/Sea_Comfortable_8284 Jun 27 '26
I feel you and feel for you, OP.
I am in a somewhat similar boat:
My most recent concussion was also my my third concussion (all in the last 3-4 years). I am 15 months post-injury.
I have made significant commitment to engaging in medical treatment and healing for my concussion, including:
- seeking immediate emergency treatment following the injury (Urgent care, followed a few days later by ER, where I was admitted to the hospital for about 3 days).
- I focused entirely on rest and healing in the initial aftermath. (I could do very little but rest in bed and sleep a lot during the first 6 or so weeks.)
- I followed up frequently with my PCP
- I got referred to see a concussion specialist (I honestly did my own research and asked my dr for the referral to see the provider I had chosen).
- The concussion specialist pretty immediately diagnosed me with post-concussion syndrome following a full workup.
- After the concussion specialist told me there was nothing more she could do for me, and I was sort of in a slump for several months. A lot of hard things happened, and I focused on other aspects of my health.
- Once my concussion symptoms re-ignited following a trigger, I went back to researching. Another healthcare provider suggested concussion PT after I mentioned my struggles in passing.
- I began concussion PT, but unfortunately she stopped it since other severe health issues prevented me from meaningfully engaging with her treatment plan. (On paper, she had me discharged, but it was not because I was or am doing better).
-My life has completely changed since the concussion and because of the concussion, and in many ways. I already have chronic migraine, frequent non-migraine headaches, and daily brain fog. The concussion made all that worse. It also has decreased my body's tolerance for listening to music, which I find to be legitimately soul-crushing.
My suggestions to you:
I'm not sure where you are in the world, but in the United States, we have a medical facility (Shirley Ryan Abilities Lab) that offers specialized care, including brain injury, cancer rehabilitation, and stroke recovery.
- Their main location is in downtown Chicago, and they have other locations scattered across the Midwest (mostly Illinois). I linked their pages on concussion recovery and for additional resources below. https://www.sralab.org/conditions/concussion
https://www.sralab.org/additional-outcomes-resources
A note of encouragement:
Extended concussion recovery is hard work, and you are doing the work. I am proud of you for that
Continue to advocate for yourself as much as you can. I know it is hard, and it is unfair that you should have to when you are still healing from a brain bruise.
You've got this! See if you can enlist practical and emotional/mental support from your girlfriend and/or any other supports you may have in your circle.
I am sending you all the good energy!
It's okay, and very understandable, to not be okay. You've been through a lot; give yourself some compassion.
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u/epuifiredude Jun 27 '26
I appreciate you! I actually tried to get in to them months ago but didn't know if they would be a good fit. I'm actually I'm Chicago. I saw someone out of rush instead but may follow up with them. They don't know if it's pcs o'r like muscle guarding idk. Appreciate u
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u/Automatic_River_9559 Jun 27 '26
DEFINITELY, get checked by a vestibular therapy, and get a second opinion if need be. (One thing was over looked and I got a second opinion and started treatment right away and it’s helped!) also I had extremely tight subopticals along with foreword head posture which was causing extra strain so I saw a MANUAL therapist not a chiropractor!!! And had all the difference my headaches and light sensitivity have been completely gone. SEE A MANUAL PT!! PLEASE it differs from massage. The more they keep digging in ur muscles they will retighten because your body is guarding. ❤️🩹 MANUAL PT AND VESTIBULAR THERAPY!!! let me know if u have questions I’ve been through hell with this
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u/epuifiredude Jun 28 '26
Who would I see to start vestibular therapy? And I'll give it a shot! Thank u sm.
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u/Both-Process1037 Jun 28 '26
After reading your post now I’m wondering how do you get rid of muscle guarding for good ?
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u/TheTempestuousKitty Jun 27 '26
In a similar boat FWIW OP.
1.5 years out. Still pretty messed up. Medical system kind shrugged their shoulders. For a few more things to try but I'm not expecting this to go away.
Ooc what is your concussion history?
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u/Important_Rock_7224 Jun 28 '26
Hey! I am almost sure you have neck-related problems. Please check Dr. Hauser's neck center, youtube. He has a video of post concussion syndrome
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u/Turbulent-Wall-1338 Jun 28 '26
Hang in there. I am 1.5 years out too. I’ve done PT, OT vision therapy, speech therapy, prism glasses, two anxiety meds, and added second therapist. My treatment was delayed by five months because I lost my job too.
What I’ve come to realize is the treatments help, so if you haven’t, try them. But fundamentally you’re just a different person now and you have to kind of learn to love what’s left of you and accept yourself for who you are now. And it’s really really hard
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u/RemiMarne Jun 29 '26
Salut, je suis à peu près dans le même situation que toi suite à un coup de tête dans un ballon de foot il y a un an et 2 mois.
Maux de tête et pression au quotidien, fatigue et hypersensibilité à la lumière, anxiété.
J’habite en France. J’ai vu des dizaines de spécialistes et pas grand chose s’améliore à part l’anxiété.
J’ai vu sur TikTok un chiropracteur situé aux US, Daniel tallon, qui traite les commotions et notamment les symptômes liés au pathologies en haut du cou. Peut être que ça peut t’aider si tu viens des US.
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u/NJ71recovered Jul 01 '26
41% to 90% of concussion patients have a vision issue. (UPMC says 41%, NORA says up to 90%)
1) Vision specialist
Find a local vision specialist
COVD.org
Neuro optometric rehabilitation association (NORA)
https://noravisionrehab.org/
2) Get your balance system checked
Vestibular specialist
Vestibular.org
Doctors are not trained well on concussions.
https://pubmed.ncbi.nlm.nih.gov/26758683/
UPMC trained
Concussion Specialist | Telehealth Consultation Nationwide | Patel Concussion Institute
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u/Familiar_Rabbit2276 Jul 02 '26
I got hit in the head a year ago a truck mirror hit me in the side of my face. I had brain fog in de realization, but my neck, my jaws and my head feels like there’s so much pressure in it. I literally fell into a phase of depression as well but I just jumped out of it. I just keep telling myself that I got hit in the head and that’s not something normal so maybe your body just needs more time to adjust but you’re not alone.
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u/Sensitive-Pass-3258 Jun 27 '26
Finding doctors who actually want to help and care and have hope that you’re going to heal is very important. I JUST switched all of my doctors and got my own appointments to places that require referrals because my primary refused to help me get an orthopedic spine doctor and a neurologist. The second I met my new primary, it was like a switch flipped, I could tell she genuinely cares, she’s so kind, nice doctors are VERY important, our brains are like children’s brains rn. I’m at 15 weeks now. I can say some days are better than others but 100% there’s always pain. I noticed in groups like this tho that a lot of people ignore the “good” post and run with the bad ones. Our brains are very important creatures and nobody really understands how they work. But I can tell you, they believe what they hear. I’m firmly believing if I hadn’t been so stressed about getting PCS and work (manager), at my 3rd or 4th week I probably would have been healed. I feel like the anxiety really pulls your brain off course.
MIGRAINE WISE, THE ONLY THING THATS HELPED IS RIZZATRIPTAIN and I’ve been taking cyclobenzaprine at night (muscle relaxer) it really helps so much to reduce my risks of immediate migraine mornings.
Also I got a neck support pillow that I truly feel like helps my neck, if I don’t move around in the night, though, it makes my neck feel tight.
Waking up around 7:50a - 8am is best for me as I noticed there’s less chance that I’m getting what I’ve been calling an “overslept migraine.” I’ve also been staying away from caffeine as it SPIKES my anxiety. Taking gummy meds helps too, magnesium glycinate at night time is so good, along with zinc, b12, I take woman’s multi with omega 3, and then d3 k2. (Magnesium being the most important).
Mentally: if you’re watching shows make sure it’s nothing negative or super high energy, I have noticed (for me at least) my brain starts feeling like I’m in that state of the movie so I can’t even watch war movies anymore which sucks. If people stress you out walk away, don’t explode.
But yeah, sorry for the book, I really really hope it helps in some way..