Sara Birkholz, on Post Concussion Syndrome, From the Trenches

imagesaraThe past several months I have picked up and read books about personal accounts of survival. The authors have amazed me with their strength and their new outlook on life once they have emerged from whatever dark tunnel or trial was placed in their life. As I finished reading each story, however, I could not help but wonder what their story would look like if they had written it in the midst of their battle. I have struggled to write this article because I do not yet have the insight of seeing the light at the end of the tunnel. I do not know how my “crisis” so to speak, will turn out. I decided in a way this is a good thing because the purpose of The Knockout Project is to educate people on what the ramifications of a concussion can be. Stepping into the life of someone who is currently living day in and day out with the consequences of a concussion can shed a lot of light on why it is so important to protect ourselves and those we love from being injured.

First I would like to start with the definition of concussion. A concussion is a traumatic brain injury that alters the way your brain functions. In the past when I heard someone had suffered from a concussion, I did not think much of it. My first reaction was NEVER “Bobby received a traumatic brain injury today during football practice.” Instead I thought, “whew, Bobby had his bell rung a bit at football practice and should be fine.” I am sure that is the way the majority of people feel about concussions. I thought this way about concussions until last August.

On August 7, 2012, our family decided to end a fun three day trip to Duluth, MN by going on the new Alpine Coaster at Spirit Mountain. After all, it was on the way out of town and the kids were pretty pumped about riding it. I hopped on the sled like contraption with my daughter. As we left the boarding station the employee told us “go as fast as you can, the sled is attached to the tracks and you cannot be thrown off.” Of course once my 10 year old heard that great news, we were full steam ahead. As I saw the first turn approaching I felt like we were going much too fast and leaned forward to grab the brake. I was too late, and because I had not leaned into the turn and was in an awkward position, I got whipped to the right. I actually felt my head snap and was dazed the rest of the way down the mountain. At the bottom I told my husband and kids that I did not feel well and that I was jarred on the first turn. We all just laughed and talked about mom being a wimp and getting too old to go on rides.

Within 48 hours from my ride down the mountain, I started having dizzy spells.

Within 72 hours I ended up in the emergency room because I could not stop throwing up. I did not even initially associate my symptoms with anything that had happened at Spirit Mountain. I thought to have a concussion, you had to be knocked out. Many tests were ordered to figure out what was going on with me and why I was suddenly having a “neurological event” (that is what the doctors described it as on those first few days). Eventually, I was sent home with the “good” news that my CT and MRI were both clear.

It was not until about 10 days after the accident, and continued nausea, vomiting and dizziness, that I called the neurologist to tell him about the Alpine Coaster ride. He confirmed that I did not need to be knocked unconscious to have a concussion and that I was indeed having concussion symptoms. He told me to continue as I was and all my symptoms should clear on their own within 6 weeks.

Fast forward to today, February 26th, 2013. I am almost 7 months post accident, and as I sit and type this article I am wearing sunglasses because the back light from the computer screen is excruciating for me. I have not had one moment since August without nausea, dizziness, light sensitivity, and disequilibrium. Up until Christmas, I was still vomiting almost daily. Even bending over to get laundry out of the dryer makes me feel like I am spinning so much I have to rush to a toilet. Every time I am in the car and we go from moving to a stop I have a wave of nausea come over me that is so severe that I have to prepare and have bags in the car. Entering into a big box store, like Target, makes me feel even more off balance and dizzy. I try to wear a baseball cap and sunglasses into stores but even that does not take away the increased nausea and disequilibrium that the fluorescent lighting causes. From the moment my feet hit the floor and my eyes open this is my current “normal”.

Before this accident I was an avid runner, taught spinning classes at the local gym, practiced law part time, helped coach my kids in various sports, spent tons of time with my girlfriends and family and absolutely loved and embraced every day. Today I struggle to even get through a day. I have prayed to die over and over because my physical symptoms are so horrendous. I cry myself to sleep many nights because I know in the morning I am facing another day like this. I feel awful 100% of the day. I have severe nausea 100% of the day. I am dizzy from the moment I stand up. I feel off balance 100% of the day. Grabbing milk and juice quick from a grocery store is excruciating with all the lights and stimulation.

People do not understand what it is like to live this way. I have gotten everything from “what is your problem, you just have a concussion” to “certainly you can’t still be having symptoms?!” But the worst was recently when I retrieved my file from the clinic and the doctor had written “hypochondriac” and “health anxiety” as his conclusions to my problems. ARE YOU KIDDING ME??!! I could not make up these symptoms if I tried. And frankly, I would be living my life to the fullest not spending time at a clinic. That is all I want and pray for…..my old life back. It is a very scary moment when you are still sick and miserable every second of the day and the doctor who was in charge of “helping” you does not even understand concussions and doesn’t even believe you.

I am now seeing a new set of doctors in Minneapolis, MN who truly understand post concussion syndrome. Every time I leave their offices, I feel even more educated about brain injuries. In two short visits, they have gotten to the bottom of the dizziness and nausea. Apparently, my whole ocular system was knocked out of whack in the accident and each eye is focusing on a different objects and sending different messages to my brain. The scary part is about 50% of the brain is devoted to visual processing. So, I know I am still facing a long road to recovery with my therapists. I am also undergoing vestibular therapy to get my balance back. I never realized that one small, or what I thought was small, whiplash event could damage so many centers in my brain.

Finally, living with PCS is a very lonely journey. I have learned that as your symptoms persist, everyone moves on with their lives. Every once in awhile they throw you a “how are you?” Sometimes I tell people things are a little bit better only because I do not want to go through the process of trying to describe my symptoms. Sometimes I tell them I am little bit better because I wish so badly they were getting a little bit better. But the honest answer is “I am the same.” I have not seen any recovery in over half a year. PCS is a time when you really learn who your friends and loved ones are, and you learn that health, above anything else, is a true blessing you took for granted every day.

As you can see, when you are in the midst of a dark tunnel the story is not exactly inspiring but it is real! This is a very frank look at my current life with post concussion syndrome. In addition, you get to see how absolutely devastating a head injury can be. I do not have a history of concussions. This is my story after just one concussion event. All it takes is one event to have lingering, debilitating post concussion symptoms. I want people to realize that risking your brain to go back into a game is not a good decision. Riding a bike or going skiing without a helmet should be unthinkable. I could go on, but ultimately I want to educate others as much as possible, because even though I was in a freak accident, other people have the chance to step away from a sport or event before more damage is done. Also, I want to emphasize how important it is to find the right doctors and therapists if you are having lingering symptoms from a head injury. Trust your gut. The doctors are working for you and this is your brain not a cut that needs stitches.

I know in the end, God never gives us a challenge we cannot handle. With the help of my husband and two wonderful kids, current doctors and therapists, and the love of all my other PCS pals, I know this has to get better and I can continue to persevere. I plan to continue to update all of you on my progress in therapy and hope I can help anyone who is currently going through this. I hope someday I can write again with the insight of recovering from this monster. People with head injuries have an invisible injury. We look healthy on the outside, but deal with very real, disabling, miserable side affects every day. Concussions are not something to take lightly. As Sir Francis Bacon said, “Knowledge is power.” And now you know.

42 thoughts on “Sara Birkholz, on Post Concussion Syndrome, From the Trenches

  1. Kelli

    Thank you for your enlightening words! You are one brave woman. I know from living beside my type 1 diabetic son that when you are in the throughs of an ongoing disease life can become exhausting and overwhelming. People whom wake up to these daily battles are true heroes; you are a true hero. My son keeps going, keeps treating, keeps trying even though there is no end in sight. Some days he falls apart and can’t seem to find purpose. On those days he needs the love and support even more from those around him…and so do you. The truth is family & friends need to stay at your side every day, not just the bad days, as you, like my son, realise you are fighting a battle with no end in sight. Make sure to stay in God’s Word to refresh your soul, seek laughter, treat symptoms of depression through many avenues (it is part of living with ongoing symptoms that don’t let up), and know you are still such a beautiful, capable person. I’m so blessed to know you. God will continue to enlighten others through you as he already has for thirty plus years. Thank you, Sara!

    Reply
  2. thepostconcussionsyndromern

    :). I know you will get there. I know it is rough. The toughest part is not knowing when. It is, what seems to be, the ever changing finish line.

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  3. toni

    You have no idea what you writing this means to me and my family right now. As I read your words tears stream down my face and I will continue to hold you on my heart in prayer, knowing the promises of Joshua 1:9…

    we are in the beginning of this journey with my mom and are seeking doctors that understand and will help vs. BandAid it. I passed along the message you sent me…i really think she would draw strength and support from talking to you. They did another scan and EEG last night…we will hopefully have some preliminary results soon. I am going to encourage her to call you if you’d be up for it.

    thank you ever so much for taking the time and energy to write this….i cannot imagine how hard it was.

    all my love, toni

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    1. Sara Birkholz

      Toni – Your mom is constantly in my prayers. Thank you so much for your proayers. I will be in close touch!

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    2. ron

      I got injured at work-and suffering from post concussion syndrome. I feel I am getting better but then an hour later I am dizzy, poor balance, nausea, slow to respond to people verbally. I am on work restriction-but my boss and WC-are not very supportive. My boss keeps reminding me everyday-that I need to do filing-I have tried 3 different times-I get severe nausea and end up getting pain on top of my head. She gives me work assignments that have to do with reading and organizing and computer work-which I do not mind but to prevent brain fog-I have to stop and rest or just get up from my chair and walk a bit-which I find helpful. I feel my boss thinks that I am just stalling time-which is very stressful. I wish administration, HR and managers would take an interest in educating themselves on post concussion syndrome-especially my place of work-because I work in a prison-so easy to be assaulted.

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  4. Scott deMoulin

    Hey Sara,
    Thanks for sharing and sorry to hear about your challenges. What many don’t realize is that TBI (Traumatic Brain Injury) is more common than you think and often goes undetected but the symptoms persist. It can be triggered by simple whiplash or any kind of blow to the head.

    As someone who has experienced significant TBI, I would suggest you visit one of Dr. Daniel Amens clinics (http://www.amenclinics.com/) and have a SPEC brain scan done. This shows actual brain functionality which can’t be captured on a CAT scan or MRI. They are experts in this area and involved with the NFL and the Boston U study of brain injuries in football, soccer and other sports.

    The good news is that most TBI is reversible if properly diagnosed and treated. There are many NON big-Pharm solutions to this that will help in your recovery. I would share some of those here however they will make suggestions based on what they diagnose as different parts of the brain react to different supplements and/or drugs.

    In addition they will likely recommend you begin taking a high dosage of a quality fish-oil and make sure to stay away from anything that jars your head or brain. Even running or any kind of bouncing could continue the damage and you are most susceptible to further complications if this occurs in close time proximity to the original injury.

    In addition to the right supplements, hyperbaric oxygen treatments have been shown to help recovery as well but I would encourage you go to Dr. Amens clinic for a SPEC scan for proper diagnosis and treatment.

    Wishing you well,
    Scott

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    1. Sara Birkholz

      Thank you Scott for all of your recommendations and support! I will be looking in to all of the above. Prayers go with you as well!

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  5. Brigette

    Thank you for sharing what has happened and what you are going through. I can understand so much of it from helping my husband after his accident. He still has days just as you are describing. And like you say it is easier to sometimes say that things are just fine than really saying how they are.
    You are so strong and have a wonderful support system too. We will have many thoughts and prayers for you and your family.
    God Bless,
    Brigette

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    1. Sara Birkholz

      Brigette – many prayers going out to you as well. I would love to talk to you about your journey as well! May God continue to bless your family.

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    1. Sara Birkholz

      Thank you Andrea. This is a good reminder. I often to not feel brave or strong, just scared to death of continuing to live this way. Thank you for your prayers and support.

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  6. Janelle (Phelps) Magelee

    Oh how my heart breaks to read your story, Sara. You don’t deserve this. No one does. And yet you are so right that God gives us all challenges for some unknown reason. I just pray that your “test” is over very, very soon and that you will then have the strength to help others that have been in similar unfortunate situations. I’m so horrified to hear about the clinic doctor’s ridiculous conclusions. You should be able to trust a medical professional but obviously not. Good for you to seek other care. I so wish you, Nate, and your family were not going through this. May God comfort and heal you & quickly so that you can be the happy, ever-smiling person I remember from Bethany.

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    1. Sara Birkholz

      Janelle – Thank you so much for your kind words and prayers! The clinic in reference is none other than the Mayo Clinic. It was so nice to hear from you. God Bless. I hope you are well.

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  7. Lucy

    Thank you for sharing your story. I got a concussion 13 months ago, and experienced the deeply challenging and debilitating symptoms you explain, and I too was a very active go getter. My place of major despair began at about 7 months. I’m writing this comment to tell you, last month I started feeling better (all of a sudden I meant it when I said it after someone asked). So there is hope! And I am grateful you opened to share your story because it IS real and many could be helped by others awareness. I’m sending this to my family to show them, this is not just me who has this experience. Blessings on your healing!

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    1. Sara Birkholz

      Lucy – thank you for posting that there is hope. I am so thankful you have turned a corner and are starting to feel better. Was it anything in particular that helped you? May God continue to heal you as well. I hope you have your life back.

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  8. Kathy Stelljes Wordell

    Sara, you just wrote my story, except I got my concussion on the Tilt-a-whirl ride. That was 8 years ago. I would love to relay my story to you, but it is rather long. Please let me tell it to you. It will be worth your time.

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    1. Sara Birkholz

      Kathy –
      I absolutely would LOVE to hear you story. Please email me at sebirkholz@hotmail.com. I can also share my cell # then too, as I know it is hard to fully relay a story in writing. Thank you so much for your willingness to share with me. I pray your story has a happy ending and that you are well. Can’t wait to hear from you!!!

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  9. Joan Runke

    As I read your story and the comment by Kathy Wordell, I wondered if I didn’t suffer a concussion as a child, only second grade. I went on the Scrambler and got very, very sick. Never again another twirly ride for me, ever. I’m now 46 yrs. old and periodically have dizzy spells for most of my life. I was tested by a PT about 7 years ago when the dizziness got unbearable. I was told there was “definitely something wrong with my vestibular system”. I was given a simple therapy, but eventually discontinued. I still get periodic dizzy spells which not one Dr. has ever been able to explain to me. I can’t imagine the dizziness everyday as you have. I will keep you in my prayers. P.S. I see from another comment that you are a Bethany alum. I’m Bethany JC class of 1987.

    Reply
    1. Sara Birkholz

      Joan – So many concussions do go un-diagnosed….I pray you get some answers and some healing. Have you been to the National Dizzy and Balance Center in the Cities? I am assuming you may still live in MN if you are a Bethany graduate. I would recommend seeing them if you have not already…. Hugs and prayers to you.

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  10. Kevin Saum

    Sara, thank you for sharing your story. It is amazing how people cannot grasp the severity of Post Concussion Syndrome, just because they never personally experienced it.

    Keep Choppin!

    Reply
    1. Sara Birkholz

      Thanks Kevin! I really enjoyed your story and am thankful to be working with you on the KO Project. I am so thankful that you have your health again. Thanks for the kind words.

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  11. Paige Silver

    Hi, Sara,
    I, too have had a long journey starting with a fall on the ice in January 2011. My experience seemed to baffle my physicians and the neurologists I saw. When I finally received a diagnosis from Sister Kenney in Minneapolis, it was such a relief to name the miscellaneous symptoms I had as a result of the injury. One of the side-injuries that I sustained went undiagnosed for several weeks – the vertigo I suffered was due to a crystal in my ear. Several PT sessions later, the problem resolved as did my vertigo. You don’t mention exploring that possibility in your posting, but if you have not looked into it, please do. In the meantime, I know what it is like and send my best wishes for your continued recovery.
    Paige

    Reply
    1. Sara Birkholz

      Paige –
      Thank you for your post and kind words. I have been evaluated for inner ear damage…. they were able to eliminate that as a cause but I did fail the balance tests that went along with it. Because of this, I will be receiving some vestibular therapy. How are you doing today Paige? May God continue to guide you and bless your complete recovery as well.

      Reply
  12. Val

    Oh Sara! Just read your story….. How aweful…..I haven’t heard from you in so long….I “assumed” maybe you were doing a little better!!!!! Will call you soon……
    The Ruden family is here for you!!!! (anytime!)

    Reply
      1. Kelly Behnke-Schleper

        Sara, I think of you often and pray you get back to normal very soon. Please keep me updated on your progression. You are an amazing lady for hanging in there this long. Sending much love your way! XOXO

        Reply
  13. Marian

    I share your pain, Sara, and your frustration. I suffered a tbi on 9/5/12 and still have a wonky head, so to speak. Low stress tolerance, no patience for sustained noise, lightheadedness, still feel like I was hit upside the head with a bat just yesterday. Some days are worse than others. My best therapy has been lap-swimming 3x/week at the local high school. I’ve worked up to 1/2 mile (36 laps) per session and honestly, those sessions in the pool are the best time of my week. Wonderful therapy for my head, neck and dizzyness, and just overall strength. I only do various backstrokes or side-stroke as they provide therapy without stress.
    However, since December, the tbi has been messing with my senses of taste and smell, which is frustrating because I love to cook and to eat good healthy food. Some days I smell icky smokey essences sort of at the perimeter of other smells, which can be nauseating. I feel like I taste just the shadow of a food’s real flavor dimensions. So much for the joy of cooking! I, too, tired of the medical articles and found more hope in the blogs of others who have recovered from tbi. The good news is that I haven’t lost these senses altogether, which apparently means there is a greater chance of ultimate recovery than if they had gone dead.
    But my heart goes out to you with your visual/balance/nausea issues. I think those disturbances are way more discouraging and wearing on a person than even pain. What I experience seems but nuisance compared to what you describe. I had no idea that a tbi could express itself in so many ways and for such duration. It sounds like you made a wise decision to seek more compassionate and knowledgeable medical care. Keep hope alive! And for encouragement, read Kitchen Table Wisdom: Stories that Heal by Rachel Naomi Remen — the only book I ever began to re-read as soon as I finished it. Her second book is wonderful, too. (Thanks for the site — Caroline G sent me your link. And encouragement to all others going thru tbi recovery, also.)

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  14. anon

    I am almost 2 years out from my concussion. I know what you are going through, though my symptoms are slightly different. Most days it feels like the earth has crumbled around you. I sincerely hope you make improvements. Two things you might want to consider that could help you. First is an inner ear exam to rule out dizziness originating from there. Second is vestibular therapy. This could help with your dizziness. Third is a thorough neck exam by a physical therapist who has extensive experience with head/neck injuries. Many symptoms that mimic concussion have an origin in the neck (e.g., dizziness, nausea, memory loss, fatigue). These are often undiagnosed because most doctors are ignorant of them.

    Good luck.

    Reply
    1. Marian

      Thanks for the tips. I’ve recently started work with an excellent physical therapist who has traced much of my head/neck pain to whiplash effects down into my middle back. Am grateful for the gradual relief I am noticing.

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  15. Monet

    my sister had a concussion & is feeling the pcs symptoms. she was int the hospital for 4 wks, went home this weekend & went back Monday to the hospital coz she can’t eat. my family’s having a hard time to understand what’s going on with her. doctors say nothing’s wrong with her but she can’t eat. your story allows me to understand what’s happening to her, and not be angry at her for not trying more. Thanks.

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  16. Christy

    Crying as I read this!!! I am a sophomore in high school and feel like no one understands!! I go to a concussion support group at my local hospital and I’m the only one that shows up each month!! I hope ur doing better! I sure wish I was just suddenly better!!

    Reply
    1. Karen

      Christy and Sara,
      I applaud you both and pray for you.

      I am one on the outside who doubted my 12 year old daughter for 2 months. We finally pushed on and found she had severe deficit in short term memory and visual processing. The hardest part for her is that she seems fine – random headaches and stomach aches, but generally coping. She can watch TV, but can’t read or use a computer without getting a headache. It is hard to explain to teachers and students at school that she can read the words, but not really understand the sentence. She used to be “the smart one” and now she feels out of it.

      To compound things, my son got a soccer concussion (and finished the game) and then 8 weeks later had an accident that knocked him out. We thought nothing of it (as a head injury) and had it not been for a back fracture, he would have gone right back to soccer. He took 8 weeks off, then played the high school varsity season. He went to a new school as a freshman and we saw grades drop from A to B-/C and have spent most of the year riding him about effort (lack of) and now wonder if it might be residual damage from the concussion and other incident 8 months ago. He seemed better in swim season, but is now back to Spring soccer and the memory issues are back. He goes for testing in a month.

      Had it not been for my daughter, we would have continued to badger him about his grades. Now, we think there may be another issue. He seems to study and put the time in, but he just can’t find the information when he takes the tests. He also reads VERY slowly. He was never a great reader, but had a great auditory memory. He could listen one time to a lecture and get 100. Now we are happy with 80.

      I fear there are thousands of kids like him that passed impact tests and were sent back. Now they look like slackers who just aren’t working hard enough. Or maybe it brushed off as maturity, or some other issue. I encourage parents to pay attention and do more than impact testing.

      Reply
    2. jfraga Post author

      Christy, I must have missed this email. I hope you’re feeling a little bit better these days. Feel free to email me through our contact page here if you want to talk. We certainly understand all of the pain and emotions that go along with this. -Jay

      Reply
  17. Kimberly Freimuth

    I’m both happy and sad to read this as I have been dealing with PCS and I didn’t realize I even had a concussion and the doctor never told me I had one. In February I slipped on ice hitting my right forehead area one the corner of my cardoor. I continued training for my figure competition with two cardio sessions and one weight training session a day along with my carb depleted keto diet. I felt drunk everyday with horrible headaches and pressure, nausea, dizziness, but some how told myself it was just the diet and training since no doctor said I shouldn’t continue. About mid march I had lost it and couldn’t continue the diet and training still not knowing I was recovering from a concussion. I then was on vacation for a week feeling much better until I hit my head with the screen door and everything spiraled out of control with symptoms coming back twice as bad. It took my work a month and a trip to the ER to find out the first hit to the head was workmans comp issue and have been home since end of march. They are now thinking I may have sight issues after I went in this past week for testing at a nuero rehab center. I’m so frustrated with life and knowing how those close to me can some how understand what I’m going through and how to deal with me 🙁

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  18. Wanda

    Hello Sara,
    Your story is pretty much my story for the past 5 months.
    The constant DIZZINESS has to be the most debilitating
    Symptom! How are you feeling now?The best of days are
    Yet to come! Positivity and my little girl are what keep me
    Going even though my role has changed a little because of
    Set back.God bless you for telling your story! I wish the best
    For you.Take care keep strong there has to be a flicker
    Shining that eventually turns into a FLAME!

    Reply
  19. Shonna Elgin

    Thank you so much for writing this article. This past July I was involved in a high speed car accident and, amongst other Injuries such as a broken sternum, I have also been now diagnosed with PCS. I went from having a very active lifestyle and a high-profile job running a large department to laying in bed most of the time suffering from headaches and migraines. Words don’t come to me easily, my vision is affected, noise is a huge issue for me, I can’t sleep without medication and I can no longer multitask. It is depressing as people say that I look so good after the accident but they don’t understand how messed up I am on the inside. I was looking for a place to get some sense of understanding and support. Lately I have been listening to audiobooks at a whisper level on headphones and it has made the time spent alone in a dark room more bearable. I would be interested in hearing more about your therapy and progress. I wish you success in your recovery.

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  20. Maria Gagnon

    God Bless You for postingn your story. I am now 9 months post concussion syndrome and know exactly how you feel. I left my neurologist office in January crying after she kept insisting that it was anxiety and then had the nerve to ask me if I had ever been diagnosed with “Bipolar” disorder. I was so hurt and angry at her and began questioning whether she had ever treated anyone with PCS as this was only our second visit and I really didn’t recall our first other than I didn’t like her then either. You have given me some relief as just a few days ago I heard from my own brother that he didn’t think my “brain injury” was all I was saying it was. People see us as normal because we are not disfigured, because we still talk normal, yet I still have issues with spelling, some measurement when baking, word searching, overwhelming fatigue, light sensitivity, noise sensitivity, and OH, lets not forget the dizziness!! That’s just to name a few. I would not have been able to get to this point without my family (my children) and my faith because my God has sustained me. I pray for you and your family. God bless you and keep you. Thank you again for posting. Your story touched my heart and hit right home – I understand I GET IT! Thank you again.

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  21. MIcki

    Thank you, Sara, for this. I’ll be emailing you if it’s OK; I live in the Twin Cities, too, and would like to know the name of your doctors.

    Reply

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