Post-Concussion Syndrome

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Post-Concussion Syndrome
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    Community Voices
    Community Voices

    It’s been a year

    I had my accident April 26, 2021. Thank God I was just approved for SSDI on my first try.

    It’s a hard situation because it’s an invisible illness and no one gets it. My husband least of all. No one respects that I feel sick or dizzy or nauseous or out of it or that I can’t do math anymore or remember shit.

    I can’t drive very well but because my husband refuses to be involved won’t drive me anymore, I do. It’s kind of funny. I take interstates where I can put it on cruise control and I don’t have to make so many decisions. LOL

    I used to knit And loved it but it’s hard for me so I color and, of course, my husband makes fun of me.

    I’m terrified of falling.

    I have surgery in two weeks to fix my neck (c4-c8) - stuff I can’t even pronounce but I remember corpectomy and discectomy. I’m absolutely petrified.

    I have a 29 year old son with autism who is devoted to me and depends on me. He helps me so much. Thank goodness for him. I dummy know what I’d do without his love and support even though I know he doesn’t get it either.

    I can’t read anymore but woohoo for audible right???

    So that’s my deal, sorry to sound so negative. It’s just the way it is.



    3 people are talking about this
    Community Voices


    Part 1 of 4 MISUNDERSTOOD

    Most people don’t understand how often I go under with my #ChronicIllness , how I pay dearly for any days I’m active, that I only have 3 functional hours a DAY without debilitation creeping in & how frequently I can do nothing but rest and recover. That leaves this driven woman so frustrated and with mountains of life and responsibilities to catch up on for days after. If I don’t have another flare then I am blessed enough to get back to any other income generating or giving activities. And then I’m not necessarily ready for the aftermath on my body of doing so. I often push through, but in order to not go insane from pain and debilitation it is in my best interest finally in my life NOT to.

    All I’ve done is push and try and comments I receive here about being young and lucky (I am 44)…or people thinking I’m lazy or anti-social… or haven’t tried hard enough to get well… or that I can’t keep my promises… because they don’t realize how sick I am is literally heartbreaking. Yes, I have done about every holistic remedy over the past 18 years, continue to be on powerful herbs, detox constantly and work with an excellent specialist in Orlando, FL every 3 months to fight for my health. I have worked extremely hard and #LymeDisease has stolen so much from me ie. any possibility of having a successful #Relationships and starting a family. Then, I learned you can transmit #LymeDisease through the placenta so there went that! I’m finally in a place where I can have quality of life and literally living is worth it. I have SACRIFICED to get here!! My horses have been saving my life daily over the past couple of years because I have to get out, use my muscles, and take care of them every day. I know my heart is weak so trudging uphill here with the wheelbarrow might just be saving my life even if it sounds like I can’t breath (I often have severe air hunger). People are so blind to the fact that my doctors and I ARE doing so much right or I would be SO MUCH worse. I can have moments and half days without suffering which I never had before. People always tell me they either know someone who had Lyme but are better so I must be missing the magic cure, or that the person they know has it really severe, not like “my mild case.” It’s ridiculous. My life is constantly busy doing on the days I can, catching up, or resting to heal to catch up again. I hardly have any free time or feel well enough to socialize. That should not receive criticism. I am not a burden on anyone and don’t need pity or help. JUST understanding and being seen for who I am would be appreciated.

    #LymeDisease undiagnosed for four years set into effect a cascade of powerful physiological changes that can never be undone that ruined my adrenal glands (this is a huge deal), left me with zero energy, hormones that I have been trying to replace, left my body unable to process environmental stressors, mold or tolerate heat, left me almost allergic to the sun, makes my Epstein bar which is mono viruses ???? constantly reactived even though I have to take antivirals daily, the list goes on and on. #LymeDisease starts up #PostconcussionSyndrome in me very often which has the effect of a #TraumaticBrainInjury . People keep looking at me judgingly and ask why I cannot get well. Having #LymeDisease and treating it right away is nothing like Chronic Lyme, it being left in your body undiagnosed for four years to cause destruction. It does irreparable, irreversible damage to your other body systems. SO many precious fellow warriors are in my shoes with this lifelong disease and a google search on the internet will reveal the horror of it. I struggle to take about 20 medications a day, get concoctions down and try to do oxygen ozone treatments in my house just to stay functional. Trust me, this is not what I want to do with my time, energy and brainpower, or finances! Yet, people still judge me every rare occasion I get out, look at me and ask me things like, “what are you doing with your self these days?” or “we thought you were better.” Or “We never see you.” As if I have a choice and am laying around with free time.

    My words falling on deaf ears and being so misunderstood is cruel. I am completely honest and transparent, telling people that I am chronically ill. The entire reason I had to leave my family and friends and move out here is because I lost the ability to work and the Florida environment was keeping me completely debilitated and in bed. Yet they constantly do not hear it. Just becau

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    Kristin Moran

    What COVID Taught Me About Post-Concussion Syndrome

    I was anxious prior to the six-year anniversary of my concussion — cruel anticipation finally leading to a shower cry. But I was fine on January 4th. Actually, I was great. I lay in bed with COVID symptoms, but the chills and muscle aches and fatigue didn’t faze me. I have spent so much time in bed resting with post-concussive syndrome that it almost felt like a relief to have an illness overshadow whatever this is. A different kind of headache, a comfortable kind of tiredness. The last thing I want to do is dismiss the pain and death and grief that COVID has caused for so many people. It is a scary and formidable illness, especially long COVID, and I am lucky that my symptoms only lasted a few days. I am privileged to have access to vaccines and boosters. But watching my body heal itself put me into such a state of wonder as I have been unable to recover from this concussion that happened six years ago — my right heel slipping on ice, my head landing full force on the crumbling concrete of the driveway. Even after all these years, I still can’t walk down a busy street or scroll on a phone or read or drive a car without debilitating migraines, dizziness, and unrelenting fatigue (not fatigue like I need a cup of coffee; I mean fatigue like I can’t walk to the bathroom). I originally approached my concussion problem as I would with anything: research and then pros and cons lists. This led me to medications, injections, blood patches, radiofrequency ablation, platelet-rich plasma. Rehab and then more rehab. Lasers, Chinese herbs, syntonics. A surgery that pulled my scalp away to decompress nerves. I’ve had a sleep study, slept in hyperbaric oxygen chambers, had fingers down my throat to adjust my sphenoid. Post-concussion syndrome is how you are labeled when your concussion symptoms don’t go away. They tell me: “It’s a nerve issue, a ligament issue, a dropped cerebellum issue. It’s coming from your neck, it’s due to your mitochondria, it’s your vision. No, you probably have a Dural leak. You have cervical instability; you don’t have cervical instability. There is something on your brain MRI — it may be a sign of trauma or migraine — but we don’t know so let’s not make an issue out of it. Put your energy into learning to live with your limitations. No, never stop fighting, you can always get better.” Trying to get better is what I have been doing for the last six years. It’s what I do for a living, but this is hard to explain to the inquiring Trader Joe’s cashier, the old friend from college, my daughter’s orthodontist. But it is easy to explain that I had COVID for a few days, an ending that moved it into the past tense. Concussions are supposed to heal too, but mine changed my life. Maybe at this point, I should just move on. To what, I do not know. But this constellation of symptoms that together barely have a name, only labeled with the flimsy word “syndrome,” have been integrated into whoever stares back at me in the mirror. In this new year, I am supposed to schedule a myelogram to find that elusive Dural leak, consult with a new functional medicine doctor to discuss coenzymes, fly to Chicago to see a vision specialist. Or do I stop running down rabbit holes with my precious disability money? Six years is a long time to be running. Maybe it’s time to look for new states of wonder, ones that exist outside of my bedroom, ones that cause me to look away from my body and into the sky.

    Community Voices

    Anyone here have #DCD / #Dyspraxia ?

    I've been bumping into walls since 1994, lol. I also struggle with my fine motor skills as well, always have. Anyone ever have occupational therapy as an adult? I went briefly a couple of years ago, and I am considering going back to deal with #SensoryProcessingDisorder related issues and my coordination challenges.

    In other good news, my #PostconcussionSyndrome symptoms have reduced/are practically nonexistent!


    4 people are talking about this
    Community Voices

    What my brain feels like most days

    <p>What my brain feels like most days</p>
    3 people are talking about this
    Community Voices

    I fell out of a moving car when I was young. I have often wondered if my Major Depression Disorder is in any way partly caused by that.

    7 people are talking about this
    Community Voices

    Concussion/mild TBI #PostconcussionSyndrome

    Anyone here ever have a concussion or mild #TraumaticBrainInjury ?

    I had one in 2011 when I was 16 going on 17 (I was hit by a car, also developing #PTSD and worsening my already existing #ObsessiveCompulsiveDisorder and #Depression at the time)

    This week I slipped on ice while walking my dogs so I am limiting my screen time but I did want to come on here for brief periods of time... I read that getting a second concussion tends to take longer healing than the first, regardless of concussion severity. I wonder if this is true. Would love to hear from the Mighty Community!

    #CheckInWithMe #Bipolar1Disorder #Anxiety #ADHD #Dyscalculia #Dyspraxia #Trauma #EatingDisorders

    9 people are talking about this
    Community Voices

    Why am I hurting my marriage

    <p>Why am I hurting my marriage</p>
    2 people are talking about this
    Amelia Perrin

    Learning to Advocate for Myself With Post-Concussion Syndrome

    I never expected to be where I am. At this point in my life, I thought I’d have graduated from UC Davis with two degrees in political science and international relations, with a 4.0 of course. I thought I’d keep my equestrian career going. I had big plans, but it was never in my plan to be singing and laughing in the car one minute and be bloodied on the concrete the next. Movies aren’t supposed to be realistic. You know when the world is ending in those superhero movies and everything is suddenly in slow motion and there’s that high pitch whine in the background? Those moments when your ears start to ring and you feel the anxiety of what if there is no coming back from this? Then there’s the one person who swoops in and saves the protagonist and the world is all right again? Part of that mirrors reality when you get into a car accident, but, in reality, nobody comes to save you. I mean physically, sure, EMTs rush to your side, asking a million questions about where your pain is, bystanders watch you stumble around, with a bloody face and only one shoe on, firefighters rush to your friend crying from inside the car, ambulances wail, people gasp, police officers interrogate, and you get strapped down and loaded into an ambulance all with that high pitch whine and that feeling that the world is about to end. Life is fragmented. Memories are fragmented. But while doctors and nurses can heal your outer breaks and bruises, nobody will save you from the worst that has yet to manifest itself, the traumatic brain injury lurking behind your visible injuries. “She’s just had her bell rung… She’ll be fine in a few days. Be sure to darken the room!” These words haunt me as someone with a prolonged concussion, otherwise known as post-concussion syndrome (PCS). A few days came and went. A few months came and went. And now a few years have come and gone. I was not fine in a few days. A dark room and no TV did not and could not fix my broken synapses and brain pathways. In my experience, post-concussion syndrome consumes you. Every fiber of your being is touched by the pain, the anxiety, the depression, the sleeplessness, the aphasia. Just like that, my life was shattered. I dropped out of college, I was not able to ride my horse, I couldn’t even walk down a hallway without extreme dizziness and nausea. Just like that, my plans blew up in my face. Doctor after doctor, referral after referral, I passed every neurologic exam. Well, except for the one where I had to draw an old-fashioned clock with a specific time, but I’m a Gen Z-Millennial cusp — when have I ever had to tell the time on one of those? But I still had daily excruciating headaches, constant brain fog, and monthly migraines. I tried everything to manage my symptoms. I went through three different antidepressants. I tried anti-seizure medications. I did magnetic therapy. I tried nearly every form of physical therapy there was — vestibular, cognitive, neck. I even got 28 Botox injections in my face, head, and neck every three months to treat my migraines; and yes, it helped the worry line on my forehead, but it didn’t help my migraines and it made my eyebrows uneven. The issue I faced, and far too many in my position face, is the lack of coordinated care, lack of knowledge about PCS, and the lack of empathetic medical professionals. I was bounced from one doctor to another, and each one told me they could fix me until they exhausted every option they knew of and gave up. One doctor even told me I made it up and was “just depressed,” as if there is even “just depressed.” He sent me to a psychiatrist who rebutted that with a resounding “no, you’re not depressed, you have PCS and a dash of post-traumatic stress disorder.” So my life boiled down to the alphabet soup of the PCSs, the PTSDs, and more recently the PTVS (post-trauma vision syndrome) for years. I was told something different by every doctor I went to. The only thing anyone could agree on was to shrug their shoulders and wash their hands of the “difficult patient” and tell me to just wait it out. But how can you just wait out such an earth-shattering thing as losing brain function? Your brain is who you are. You spend your whole life crafting the person that you are through experiences. All of your personality, your defining traits, even how you move are stored in the brain. So when you shake that a little too hard, you lose that person who was so carefully crafted. I had to mourn the death of myself while I was still alive. So how can anyone expect that to just go away one day? How can any trained medical professional really believe that just because you cannot see an injury, it’s not there? I learned the hard way that no one is in your corner except you. No one can advocate for you except you. I thought I was “crazy.” I questioned whether each symptom was enough for a doctor to finally take me seriously. I did not believe what my body was telling me, that I was seriously injured. And then I got sick of not being believed. My body was fighting me, my brain was fighting me, and the professionals who were supposed to help me were fighting me. I knew something was wrong so I put my foot down. I learned to say “No,” how to ask for the pain management I needed, how to get a doctor to take me seriously. This was me finding my voice and taking back the power I thought my trauma and brain injury took from me. I learned to have confidence in my experiences and speak up. When I first got hurt, I scoured the internet for people who understood what I was going through, for some kind of sign that my pain was valid and real. So if that’s you, what you are feeling is very real. You know your body and if something feels wrong or hurt or sick, it is. Listen to yourself. Advocate for yourself. You are worth it. I never expected to be where I am today, but I couldn’t be happier. I have my dream job helping protect wild horses across the American West, I have the most amazing little rescue dog, and an incredibly loving support system. I’m back in college. I still have setbacks five years later, but thanks to a treatment center in Utah I finally have a coordinated care team who takes my injury and pain seriously. Through these experiences, I have taken back control of an invisible enemy, my traumatic brain injury. I learned to listen to my body and to advocate for myself and for that I am forever grateful.