«

»

Mar 20

One Concussion Too Many: My post-concussion story

Sometimes on Twitter I make reference to my  brain injury, but it occurs to me that I’ve never told the whole story. And until everyone – EVERYONE – takes concussions more seriously, people like me need to be more vocal. So here’s the story of how concussions broke me, but also how I got to the point where I could triumphantly tweet this:

Part I: “What the hell is happening to me?

The start of the whole mess didn’t feel like the start of anything of any significance. Before a family dinner at my brother’s house, I felt kind of woozy and went to the guest room to lie down for a bit. It didn’t help, and in fact that woozy feeling stayed with me for well over a year. If you’ve ever fainted before, you might know that twilighty feeling, where you’re aware that you’re about to black out, but you’re somehow too detached from consciousness to do anything about it. Starting that day in February 2011, I felt like that all the time.

That night my dad took me to an urgent care clinic. I did a bunch of balance tests and was somewhat reassured by the doctor’s pronouncement that I had not suffered a stroke. I repeated those balance tests obsessively at home, standing on one foot on a pillow for as long as I could to make sure I could still do it.

The woozy feeling was worse when I moved too suddenly, or sang too much, or walked too fast. Much worse, though, was the fact that my memory started getting slippery. If I tried to read a textbook or a blog post or the minutes from a meeting, I could recognize the individual words but failed to retain any meaning or message from them. The names of people I knew and saw every day were suddenly a mystery to me. I found myself doing that really sad “Hey….you! What’s up….pal?” thing that I imagine people in the early stages of Alzheimer’s do. Except, this was happening to me at age 22, not 82, and I had no idea why.

And then there were the migraines. I had about three of them per week, plus a constant dull ache in the back of my head. Looking back later, I realized that headache, and the increased migraines, plus a constant ringing in my ears, had actually started earlier. But I’m getting ahead of myself.

Other things that happened included numbness in my hands and feet, which got pretty severe. It felt like my body forgot that it had feet underneath it, so when I walked I would be surprised every time my forward progress was halted by these shoe-wearing things that kept landing on the pavement underneath my ankles. And all the time, I was just…so….tired.

Part II: 14 Hours of Sleep Per Day

It’s hard to be a college senior with classes, a job, a blog, and friends when your body thinks it needs 14 hours of sleep every day. I would get up and go to classes, if only to attain attendance points. I couldn’t remember anything from the lectures and I didn’t have the energy to keep up with taking notes. Recording lectures was a nice idea, but when would I listen to them again? I was sleeping all the time when I wasn’t physically in a classroom.

I was a pretty terrible friend in those days. I still hadn’t quite figured out what was wrong with me, which made it ever harder to explain why I couldn’t hang out, or go to this concert or that ballgame or whatever. And my friends were not the only people with whom I struggled to communicate…

Part III: Explaining Without the Right Words

Before I put together what was happening to me, I had to figure out how much to say to which people about my situation. I made the decision early on that I wouldn’t bother trying to explain my situation to “single-serving friends” and passing acquaintances. With them, I would just try to pass as a normal person, even though I was far from being the actual Minda.

Teachers were another matter. They needed to know something about why I looked half-asleep during classes, why my responses to class readings sucked, what I wanted them to do in the event that I passed out during class (call an ambulance, and my insurance card is in the front pocket of my backpack). “Some thing is wrong with me, but I don’t know what, but I need you to adjust everything for me” is what I felt like I was asking.

I wanted to let my friends and coworkers in on what was going on, but since I lacked the language to explain my constant fog and my sudden memory loss and my ridiculous sleep schedule, I mostly kept quiet. I understand why they couldn’t (and still can’t) get it: How could they imagine a brain that doesn’t work, when theirs are just fine? It was pretty lonely.

Part IV: Doctors not named Gregory House

I started going to doctors, because all I knew at this point was what the doctor at urgent care had told me: I did not suffer a stroke. After lots of visits to all manner of doctors, that was still all I knew. Everyone kept telling me I needed to see a neurologist, but I already had, and he was the most useless of the whole lot.

Lots of well-meaning people started weighing in with ideas that started to sound like the first half of any given episode of House, M.D. Suggestions from various places included mercury poisoning, a migraine disorder, pregnancy, protein deficiency, dehydration, low blood sugar, high blood sugar, low blood pressure, high blood pressure, thyroid problems, heart defects. The most maddening of these was “well, you’re just stressed.” No, I wasn’t, until my brain started (figuratively) leaking out of my ears for no reason, but thanks for being so condescending in my time of peril, people! Augh.

Part V: A-Ha! (not the band)

My mom did a lot of Googling for me when I was too sick to figure this stuff out on my own. She and I had curated a list of my symptoms and it was probably pretty ingrained in her mind as she shuffled through countless message boards and articles searching for some clue as to what the hell was wrong with her daughter. Young people don’t just lose their brain function for no reason, do they?

After a while, it clicked. Post-concussion. Sure enough, I’ve had concussions. How many of them? I don’t know. It really doesn’t matter. There’s not a magical number of concussions that a person can have before they’re affected. The number is “one too many.” But I had had a pretty bad one in a car accident, just a little while before the worst of my symptoms started. I was examined by an ambulance crew at the scene. They chalked my haziness up to shock and let me go. I went to the ER a bit later, and was dismissed right away. The staff there sure didn’t think anything would come of it, and didn’t prescribe any follow-up care.

I didn’t make the connection at first because the fog and the memory stuff came a few months after the concussion. But when I looked back, I realized that the headache in the back of my head, the one that was always there? It started long before the fog did — right after the accident. So did the more-frequent-than-usual migraines. I just noticed those more after I started tracking my other symptoms every day.

I took a list Mom had compiled of commonly reported post-concussion symptoms. I started highlighting the ones I had suffered, and almost all of the 20+ things on the list were highlighted. I saved that list into my phone, and started taking it with me to all my newest new doctors.

Part VI: More Doctors (and their bills)

The clueless shrugs that I had received from most doctors turned into worse experiences in Round Two of my quest to fix my brain before I gave in and blew it to bits with a gun.* I had to beg and plead to get any kind of relevant testing done. To my surprise and dismay, doctors didn’t want to do brain imaging even though my brain was pretty faulty and probably merited a look-see. One very rude staff compromised by doing an EKG for some reason, so at least I knew that my heart was in good working order.

*I don’t make that comment lightly. At a certain point, when your brain doesn’t work, you start to really question what the point of staying alive is. When people like Dave Duerson and Junior Seau died the way they did…I understood. It’s a marvel to me now that I didn’t meet the same end.

After that, I started getting rejected before I even made it into the door. More than once, I heard “I’m sorry, that sounds like it’s a little bit outside of this office’s specialty.” They didn’t sound too sorry, and I thought I would never find a doctor whose specialty was “brains that go haywire a little while after a concussion.”

I thought I found one, once. She was my last hope, as far as I was concerned. The guy who recommended her said she’d really listen, and get creative in trying to find me some help. Instead, she sent me to an ENT, who sent me to a hearing lab to get my hearing tested. (It’s excellent, but I already knew that.)

There were, of course, bills for all of these visits.

Part VII: “Good enough?” Giving Up.

Since my “last hope” doctor didn’t provide me any help, I was ready to give up my search and move away from Omaha, back to my parents’ house. If my health didn’t improve, there was no way I could function enough to live independently, and I couldn’t live with my brother forever.

I could only work a few hours per day at my job that was supposed to be full-time, and every day when I had to go home early, I felt like a huge failure. But I was exhausted, all the time. I started my workday exhausted because it took all my energy just to navigate the roads to my office. My brain was no longer equipped to keep track of 4 lanes of traffic or watch my own speed or remember which lane to get into for which exit. The daily commute for most people is pretty much muscle memory. For me, since I had no memory, I had to consciously make every single decision in my car, and remind my hands to keep a grip on the steering wheel. If I didn’t do that, they’d slip down into my lap and I would have no recollection of how they got there.

[Note: Writing this has been exhausting and painfully sad. I sometimes forget how bad things really got, and revisiting the worst of it has left me in tears. If you've read this far, thank you for sticking with me.]

I still had to sleep all the time and my friends still never saw me. And when I did go out, it was only ever for a few minutes and then I’d have to go back home and sleep some more. This was all very depressing.

Part IX: Washington, Washing-ton. Or not!

A year ago last week, my parents happened to find a left-behind copy of some magazine in an empty pew at church. For some reason, they decided to actually read it rather than just leaving it back in the pew. And somehow, my mom saw an article about a woman in the DC area whose daughter’s life was ruined just like mine. But then she got it back.

The treatment was called LENS, and it helped give life back to the daughter of this lady, Patty. My mom emailed Patty that night wondering if the treatment that helped her daughter could help me. Patty said yes, she thought it might, and we could stay at her house for free for as long as we needed while I was undergoing treatment. Because that’s what total strangers do all the time, right? Apparently Patty was so grateful for her daughter’s treatment that she would do whatever it took to help other families concussions were trying to ruin.

Just like that – after I had given up all hope that I would ever be ME again – we had an appointment and the beginnings of a treatment plan. I made arrangements to work remotely and tearfully told my coworkers how much I’d miss them. I was going to have to miss most of the Storm Chasers season, which was really a pity since I had a press pass and all, but it was a trade-in I was ready to make. Plus I’d get to go to Nationals games between treatments! Having some measure of hope was exciting, yet terrifying. Hope is actually one of the scariest things when you’re in a murky medical situation.

The night before I was to buy plane tickets for my mom and I to head to DC, the doctor in DC called my parents with some startling news: She heard there was a doctor much closer to me who was doing a very similar type of treatment. How much closer?  Two and a half miles from my house.

As crazy as it sounds, I didn’t want to try the Omaha doctor, because I had so attached myself to the idea (and the published research and the accolades from everywhere) of this DC-area one. But Mom and I struck a deal: If I agreed to at least try the one close to home, she’d use the money we were saving to take me to the U.S. Figure Skating Championships in Omaha.

So I went. And the treatment worked! In short, LENS treatment manipulates the electrical currents in the parts of my brain that were malfunctioning, so the currents were more even throughout the brain. Without these electrical “dead spots,” my memory started coming back to me and I finally had enough energy to just be a person in her 20s instead of a sack of dirt that could never drag itself out of bed.

Part X: Better for now..but then what?

I’m enjoying being better, and giving the finger to the broken brain that is now in the past. I can read books again, and do math problems in my head, and think critically, and go out with my friends, and drive my car, and walk around knowing that there are feet attached to the rest of me. I can like myself and see purpose in my life again. And yes, Mom and I went to figure skating, and dammit, it was amazing.

But there’s still a little cloud following me around: What if it comes back? When I struggled to think of an actor’s name the other day, was it just a brain fart or am I on my way to being broken again? What happens when life gives me another concussion?

I know that “what if” thinking isn’t terribly productive but after everything I’ve been though, I am watching like a hawk for any sign that the nightmare is returning to me. I think that little cloud’s going to stick with me a while, but I’m alive – no: Alive, with a capital A – and that’s more than I thought was going to be possible back when I was in the fog.

Epilogue

One last thing, because this is a sports blog: Sometimes I hear people talk about how they don’t get what all the fuss is with athletes and concussions. They’re tired of all the news stories, and can’t be bothered with talk of CTE. Or they’ll call Justin Morneau a pussy (their word, not mine) for missing so many games after “all he had was a concussion.” If there is one thing that anyone can take away from this post, let it be this: Don’t you dare EVER use the phrase “just a concussion” when describing an athlete’s injury. Hearing that is a dagger to my heart. Take it from me: there’s no such thing as “just” a concussion.

__________________________________________________________________________________

Please consider supporting my writing and photography by doing your Amazon shopping through my affiliate link. (Explanation here.)

No related posts.

49 comments

3 pings

  1. Michelle

    I’m so sorry you had to go through this but so glad there is treatment now, I had no idea! Thanks for sharing!

  2. caryn

    Thanks for sharing this, for the next mom up late trying to figure out what’s wrong with HER kid. And I’m glad you’re feeling better.

    1. Minda Haas

      Thanks Caryn. That’s what I’m hoping will happen, especially for young sufferers.

      1. chris carroll

        Minda I hope you are still getting these posts because I just had the same experience almost TO THE LETTER last friday!!! I am a 42 year-old husband and father of two. I was also a Biologist for fifteen years so I have a pretty well-rounded background on the brain. HUH, not even close. I was on an eight-foot step ladder trying to patch some siding on my wall. I have never had a fear of ladders and have done some crazy stuff in those hundreds of experiences. I wasn’t concerned even though the ladder wasn’t very sturdy and it slipped out from under me. At the time I had no clue that I had even hit my head. I landed on the stump of an old bush and was cut up and thought I broke my knee. My knee swelled so much that I went to the emergency room feeling positive that I would need a cast. In the middle of the night I was still awake (couldn’t sleep) when out of nowhere a feeling of (sorry the only way I can explain it) that was soooooo “dark”. That seemed to be the only word I could use. In actuality I thought I had burst a blood vessel or something and that I was simply living out my last couple of minutes on earth. THAT DARK and this is coming from an atheist. It subsided the next day but hit me ten times worse at night AGAIN. My wife took me to the hospital. I will tell you that I am a recovering alchoholic and “psycho-pills like xanax” addict sober a bit over a year.. Of course my wifes first thought was that I had had a relapse and that I taken too much of something. In the last ten years I did go up there once or twice for extreme depression but never od’d on anything.. Sorry to ramble on but I have to get this out. The orderly put me on a gurney in the hall and then everyone forgot about me. My wifw went home to be with the kids and I just sat in the hall watching the orderly’s and nurses take “selfies” with each other. I watched black apparitions fly around on the wall (again, non-believer of anything) and riled back and forth and back and forth. I probably looked like the exorcist. Long story short, everyone just sat around for two hours waiting for me, still being convinced that I had just ingested something. I couldn’t form a sentence let alone pee in a jar. The orderly go downright angry with me at one point and just left. I BEGGED and pleaded tfor them to just cathedorize me so I could get some medicine. I had to endure this for six hours before I got some relief. As you can probably see by my language and spelling I am still not 100 percent. One odd byproduct happened to me today… I can’t ever remember ever having such crystal clear thoughts, incredible insight, and problem solving skills that were exponentially higher than anything I’ve ever experienced in my life. This was such an indescribably profound experience that I am afraid I’m scarred for life. I certainly would welcome the intelligence byproduct for the rest of my life but the incredible horror that I felt those two nights would not come close to a trade-off. I would never, ever, ever consider something like suicide with my wife and kids on this earth but like you stated above I could have probably lasted another day like that and then it would have been over. I cant see a neurologist for another week but I want to know why all of the people around me were having such a laugh while I was sure I was dying. I have had many blackouts, hangovers, and hallucinations but this experience made dropping LSD look like eating a breath mint. It has been very therapeutic just writing this. Thanks a bunch.

      2. chris carroll

        Just read my post from last night. I have to apologize because since my concussion my thoughts have been very disjointed. Thanks again for your story it was like finding the elusive “silver lining.”

  3. Kenn MacAdam

    Wow, amazingly revelatory. Congratulations to you and your mom for your perseverance. Really looking forward to reading your posts about the Storm Chasers and the Royals this year. Praying your medical comeback is permanent.

  4. Troy Lewis

    i am going to give this to a young man(16) who is suffering post concussive symptoms. im elated you offer a possible solution! As of now< he and his father arent dealing with "no more football" well. i am 43, and a presumptive sufferer of CTE.
    i,too, want to have a stern chat with people who dismiss severity of concussions. especially someone close who knows better. thank you for your eloquence and passion. it will help someone someday. hopefully a young man who will read your words today! i struggle with my ability to communicate daily< but i find it imperative to thank and encourage people such as yourself to keep on keepin' on. I get emotional here, but its with gratitude and pride for a person who is spreading the word and potentially saving lives and the quality of many more lives. thank you!

    1. Minda Haas

      Troy,
      Thank you for sharing with me, too. Have you shared this with that young man yet? What did he say? I understand that it’s hard for a teenager (or even someone in their 20s and 30s trying to get/keep a career going) to really understand the risks of not taking concussions seriously. You don’t know what can really happen to your brain until it’s too late and it’s already happening.

      What is it like to face the likelihood of having CTE?

    2. chris carroll

      I have to apologize for butting in. I documented my experience above and feel like I have hit the lottery finding people with the exact same experiences with concussion. As I said above…thankfully I am not only a scientist but a year-sober recovering alchoholic and “psycho-med” addict. This at least gave me a heads-up because I have experienced many blackouts, hangovers, and bad “trips” and my concussion made those look like a day at the beach. I am a happy and healthy man and I was CLINCHED onto my wife in bed like an infant. Screaming in pain and talking to black apparitions. Since I am in recovery and I had absolutely no bump or bruise to show where I hit my head the hospital staff took their sweet time thinking I was just on too many drugs (year sober). I need some therapy…this has affected me more than the birth of my children (other end of the spectrum of course) and while I am feeling much better than average I am scared to death. I am sitting here crying and about ready to vomit. I’ll be fine. Any tips for immediate post-concussive health would be welcomed Thanks

  5. Shanna

    This is amazing. Yesterday marked the one year anniversary of me getting a major concussion while snowboarding. Straight into a tree & a broken helmet. The recovery was fraught with vertigo, lethargy, anxiety and the fear that I would never be “me” again. Thankfully I found a great neurologist who was able to help me greatly. Now, as I train for my half-marathon (I had to walk it with my mother at my side last year) I talk a lot more about concussions. When people can put a face to this health issue, it goes a long way.

    Continued luck on your journey.

    1. Minda Haas

      Shanna, your recovery story is amazing! Would you mind describing what kind of treatment worked for you? Obviously you and I had different paths to recovery with different types of doctors. I’d love to hear more about different successes!

      Best of luck with your half-marathon!

      1. Shanna

        Minda,

        The first few weeks, I was on a steady course of Mac & Cheese and Phish Food ice cream therapy. This of course was unconventional, but one of the few things that made me feel somewhat better. ;-) I didn’t really undergo many treatments as you did, but did work through the anxiety that developed (never had any issues before). I would recommend the Anxiety and Phobias Workbook as a great resource. Otherwise, my neurologist helped with a course of medications that have kept my anxiety at bay. Now that I am feeling more back to 100%, I will try going off the meds to see if I can go back to my pre-injury state. A lucky break for me was that my neurologist was a friend of the family and had a good frame of reference as to what my personality was like before.

        I still have problems sitting down and focusing, especially to read a book. This would be something that I hope to regain soon as I miss reading. Feel free to email me and I can get into more specifics if you like.

  6. Wanda

    Thank you for sharing, Minda.

  7. Section 36

    All I can say is, “Wow. So powerful. So glad you’re back.”

    Thank you so much for sharing.

  8. Kathleen

    Minda – awesome article. Thanks for sharing. I remember you alluding to some of things you mention here on royalsreview but I had no idea the degree to which those symptoms were bothering you.

    And regarding your “Epilogue” it makes me think of a recent trip I took to DC and happened to go to a medical museum affiliated with the Department of Defense. As you can imagine, they had a pretty extensive exhibit talking about the effects of trauma on the brain, and therefore the lives, of our military personnel. Especially about how the redesign of the helmet introduced in the 1990s combined with better trauma response medical treatment has led to a whole generation of veterans dealing with living with concussions. I’m sure it’s no mere coincidence that suicide rates among this generation are so high, nor that their treatment has been so ineffectual if what you experienced seeking help is anything to go by.

    This is definitely not something that only affects NFL players, and it’s so ridiculous when people dismiss the study of the brain as this. If anything, I feel like every week we are learning how much the entire body (and soul) are affected by the health of our brain, and yet it is probably the part of our body that we least understand.

    1. Minda Haas

      Thanks, K.
      The heartache of PTSD is something I think about a lot these days. It is a shame that so many men and women are affected by it, but it’s encouraging to see the work that is being done to diagnose and treat it, as the INJURY that it is. The doctor I originally planned to see in DC works closely with returning veterans at Walter Reed.

      Yeah, definitely not just football. Literally anyone can get a concussion, which means literally anyone can be at risk for the symptoms I went through.

  9. Jesse

    Thanks for sharing! What is the name of your Doctor – and does s/he have an online presence?

    1. Minda Haas

      Jesse,
      Her name is Dr. Mary Lee Esty. She is well-published in topics like PTSD, and there’s a lot that comes up when you Google her. Her staff is very responsive and helpful. Even though I did not end up being a patient of Dr. Esty, she was still instrumental in my recovery.

  10. Fake Ned

    A great story. Really moving. Excited that you can continue to share your photographic gifts to the world. Keep up the great work.

  11. Chris

    Thanks you for sharing, Minda. I’m late to the party here, so you may not see this, but I’m curious: Did your doctor(s) ever confirm the post-concussion syndrome conclusively, or was that a speculative diagnosis? I ask because ten or so years ago I also had sudden-onset neurological issues that lasted for over a year, manifested mostly by continuous dizziness and the occasional attack that was much like panic disorder. I had CT scans, MRIs, MRAs, and EEGs, saw neourologists, ENTs, and cardiologists, was tested for Lyme disease, celiac sprue, and tuberculosis, and made multiple trips to the ER (the attacks felt like what I imagined a heart attack to feel like, complete with numbness in the extremeties, chest pain, and extremely elevated heartbeat and blood pressure). I was prescribed SSRIs, Xanax, and Valium – Valium helped a lot. The closest thing I ever got to a diagnosis was an imbalance in the pressure in my middle ear. After a bit over a year the symptoms started slowly abating and I was eventually able to wean myself off drugs. Nobody every mentioned post-concussion syndrome, but it occurred to me a couple of years ago – I did hit my head sometime around when this first began, but it’s so long ago now that I can’t remember if it happened right before or a year before. I’m basically symptom-fee now, but fear a relapse because occasionally I’ll feel vague symptoms that previously had preceded attacks. I just wondered if your post-concussion syndrome was finally confirmed medically; it’s so unsettling to not know exactly what is wrong, as in my case. At any rate, I’m glad this therapy helped you.

    1. Minda Haas

      Chris,
      HOLY COW. It sounds like you went through a hell of a lot. thing is – nobody mentioned post-concussion to you then because that wasn’t even a thing people knew about 10 years ago. The understanding of closed-head brain injuries has exploded in very recent years.

      The doctor who ended up treating me (Lucky #13!) was pretty confident in making that diagnosis, yes. Especially after so many other diagnoses were tested and ruled out.

      I’m glad you’re feeling better these days, but it sounds like you and I share that small cloud of “what if?” fears. I hope both of us are just being paranoid, and we’re actually all better, forever.

  12. Paul B

    Minda,

    Thank you so much for sharing this amazing article. I’m amazed at how you’ve been able to pick yourself up and keep going in the face of all that adversity. I’ve been the victim of several concussions and had never been properly treated by doctors like you were. It’s eye opening to realize that there are so many long lasting/life-altering after effects. In the event that I actually exhibit any symptoms going forward, rest assured I will print this article and take it with me to the doctor. I look forward to next Monday and the shenanigans that are opening day in a Royals Review game thread.

    Paul (mitchfreakingmaier)

  13. Mitch Semrad

    Although concussions usually are caused by a blow to the head, they can also occur when the head and upper body are violently shaken. These injuries can cause a loss of consciousness, but most concussions do not. Because of this, some people have concussions and don’t realize it. ‘*“

    Stay in touch http://www.homelifestylejournal.com/index.php

  14. Kayla

    Honestly, the first seven parts of this explain exactly what Iv been experiencing. My neurologist has been terrible! She hasn’t given me a single correct answer, she keeps pumping me with different medications to help with my migraines, and she just diagnosed me with ADHD which I didn’t have a problem with until my last concussion, which I got due to an assault. I believe it was my eighth concussion, but I’ve had more since then. It breaks my heart when I meet someone, hold a conversation with them for five minutes and I forget their name just like that. I’m definitely going to look into LENS treatments in my area thanks to this. Hopefully there’s a doctor here who does it! Thank you so much for posting this though, it made me understand that I’m not the only one it there with a brain this messed up.

    1. Minda Haas

      Kayla, I’m so sorry you’re having this experience! Please, email me if you have any questions about LENS, or anything else related! minda.haas@gmail.com.

  15. assia

    Thank you for sharing your story. In 2010 i felt on morning trying to fixe a breakfast for my daugther and pass out. I then call friend of my who come and took me to the emergency. That how i find out i have a concussion. I did not really look in to it. I went doing my everyday activity until now. I very much forget a lot more, can concetrate like before, i am tire every day even i rest for long period of time. Now i am taking class online and it be come even worst. Very much lock of energy everyday and struggle to get out of my bed prety much as you mention. I went see my doctor and he run a blood text and nothing everything looks good. Couple prescription ad usall. Went back he then run another test and diagnose me with ADHD which i know is not true, sent me to the neurology who tells me i have nothing. I know down deep inside of me something is wrong with me. I was scare to talk about because no one would not understand. The ring in my ear drag me crazy already and let someone else tell me i am crazy, so i rathet figth it by myself. I got up this morning looking for a answer and here i am stumble across your block.. i truly thank God that i am not crazy. I am now taking vyvanse to help me do my school work but the side effect are killing me. Migraines in the other hand as well. All i can say thank you and i will look in to that treatment you mention. Lens . I will email or feel free to as well. Thank you and thank you.

    1. Minda Haas

      I’m so sorry you’re going through that! You’re not going crazy. Good luck getting through it, and thank you for sharing your story too!

      1. assia

        Minda,

        Thank for responding back to my post. if you don’t mind can you please send me the contact number for the doctor in DC by email? I am from Virginia so I think I can get there to get the help I need. once again thank you.

  16. Gina

    I was hit in the head 1year ago with a pop up tent the whoe thing hit my forehead and right temporal area about a month later I had a headache neck pain an diarrhea I was also hit in the neck pretty hard it popped along with my jaw I did not lose consciousness but was ver dazed and confused a month after getting what I thought was the flu I suffered extreme exhaustion for a week by the end of the week I was in the Ed with headache neck pain and photophobia I am a nurse and do not run to the Ed for anything they could not find anything and diagnosed me with viral syndrome my primary diagnosed me with aseptic viral meningitis I have since been through hell was put on steroids because they thought i was having thyroid problems have been fighting anxiet and depression I cannot focus cannot multitask anymore ihave since lost my nursing job of 25 years I am exhausted all of the time I feel like I have lost it I don’t like to watch tv and have lost interest in many things I do not go out at all I was once a very active mom now nothing everyone wonders what has happened to me people think I have had a breakdown my sleep is also disturbed I am in a living hell I cannot drive anymore and don’t know why I exist everyday I also lost an extreme amount of weight

  17. Garrett

    I have had somewhere between 5 and 10 concussions(most likely closer to 10). My most recent ones, so all but 2 that i got in second grade have been caused by running. I’m currently a college cross country runner about to start my sophomore year. Running pays for school, but it also triggers epileptic seizures, which almost always cause a head injury. Until recently all these concussions didn’t seem like a big deal but the affects of my last one have been worse, more noticeable, and lasted way longer. Part of me thinks i should stop running. That will stop the seizures, which will hopefully mean no more concussions. The problem is, I like running, I have a team that needs me if we are to be competitive, and I’m pretty sure that if I stay healthy and work hard I’ll be an All American before I graduate from college. It occurred to me recently that all these concussions could some day add up to something more and it scares me. I know my well being is probably more important than running. I also don’t want to quit. I also know that epilepsy already puts me at a disadvantage when it comes to getting my education. I want to be able to finish college, and brain damage could make that hard. I don’t know what i should do or what’s best. I commend you for sharing your struggle and getting through it. I would like to know if you think its worth it to continue chasing my dreams in running or if what you went through isn’t worth risking.

    1. Minda Haas

      Garrett,
      Sorry to take so long to respond. I have a few thoughts:
      You are in a really tough spot, and I respect that you have some difficult decisions ahead of you. One thing that may sound cold is, don’t worry about the team you would leave behind if you chose to quit cross country. You only have one brain, and if you decide to try to take better care of it, that’s valid. With the one-two punch of epilepsy AND post-concussion problems, any teammate who didn’t understand your decision to take care of yourself is probably too short-sighted of a person to matter that much.

      I’m sure you’ve already had this thought, but: If your post-concussion problems get to the point where they leave you in a permanent fog or even shorten your life expectancy, how much will that college education matter?

      Feel free to email me at minda.haas@gmail.com with more questions.

  18. Faye Wilson

    Your story is amazing, i cried while reading this! Im 16 and have recently been diagnosed with pcs and your symtoms are similar to mine. I hope i get through this and your story really touched me, gave me hope!

  19. Cristiana Aileni

    Minda,

    As i sit here at my computer desk working i read through your blog.

    I had a head injury last Aug (a little over a year ago) and am dealing with full blown PCS…( i was actually diagosed) I have come to know what SUFFERING is….this has been HELL for…tears streamed down my face as i read through your struggle. I have every symptom off of the PCS list….extreme light sensitivity, sensory overload, vertigo, always in a fog, memory problems, anxiety disorder, you name it i have it…..

    it IS a lonely condition to deal with…a silent one that “on the outside you look fine” while inside you are full of agony, hopelessness, frustration, confusion, etc etc

    I have improved for sure since that day but i am not ME…i am still someone different….have symptoms that linger….i feel guilty for also having those “what’s the point of living?” thoughts happen in my head….but what kind of quality of life is this? will there EVER be a full recovery? How i long for my old self again….who wouldn’t?

    It’s a day to day struggle but i can’t get ahead of myself….i have to spare all energy within me to focus on TODAY and not consume myself in future worries.

    I am sorry for each and everyone who has to endure this, including myself. I work so hard to bring awareness to this condition…some folks care to hear…other’s not….but how can they care when their brains are normal?

  20. Victor

    My 15 year old is suffering from PCS. He had a mild concussion in September this year just from running into one of his friends elbow and hitting the ground (playing football without pads). He was out of school for 2 weeks. He could not walk without holding on to anything. His MRI showed no signs of bleeding. We have gone to ENT due to his dizziness and still having some balancing issues like he cant lift one leg up without falling or walking in a straight line. The ENT is referring us to go to a neurologist and physical therapist. My son is very irritable, moody, aggressive and emotional. So he has been out for all of football season and is restrained from doing any of his JROTC activities. He has difficulty staying on task, finishing his school work, and gets headaches. I really want to help him get better. I’m thinking of his future and I dont know what is going to happen. He has plans to go to the military and join the law enforcement but the way things look right now it seems all his plans may not happen because of his concussion. It is crazy what a brain injury can do. The ENT doctor said it may take 6 months up to a year until he may fully recover. Now I understand that awareness to concussion or any brain injury needs to be taken seriously. Please let me know where I can get more LENS information.

    Thank you for sharing your story.

  21. G

    Thank you for writing this. I had a concussion from a car accident in 2009. I didn’t even think about it because everything else hurt so badly. The headaches were ridiculous. So bad that in Oct 2012 I had an occipital nerve stimulator implanted. It at least helped the headaches and I was happy. I ended up having the surgery re-done in March 2013 because something went wrong with it and in April 2013 I was in another rear end car accident that wasn’t my fault. I had very bad anxiety and panic attacks that I never had before in my life. I had to take pills just to get in a car and it took me a few months before I could drive again. I also was dizzy, emotional, extremely tired and my jaw was killing me and a slew of other symptoms from this concussion that I didn’t experience with the last one but my job forced me to come back in the end of June because I was out of sick time. They would say you mean to tell me you can’t even sit at your computer (said rudely) and I told them it’s not just my legs I hurt I had a brain injury! It didn’t matter, since I look perfectly normal and obviously they didn’t understand what a brain injury could do to you but rather than losing my job I came back to work and suffered 4 panic attacks while being back the first few weeks. Slowly the jaw pain and dizziness got a little better but I still taking anti-depressants and anti-anxiety meds. I got off the meds but the fatigue was still there and progressively got worse. I couldn’t understand it. I was getting better. I became irate because it had been 6 months since the accident I and asked the doctor to give me a stimulant because I felt like sleeping all day and the 5 cups of tea were not keeping me up along with all the other stimulants I tried. It worked for about a week and then I got so much worse I couldn’t get out of bed and they said I was going through another depression, and then the anxiety crept back in. I just want to feel like myself again. I feel so lost in what looks like a perfectly normal body. I can’t get passed the fact that I’m just not me. I crave my bed from the time I get up to the time I can finally occupy it after work. Everyone tells me it takes time but I feel like a failure for going backwards. Why can’t someone like me who used to be so active just recover already? The scans look normal, so why do I feel this bad? I always have to try to smile while I’m in front of people but now most co-workers just really don’t talk to me. I’m just “off”. It’s just my kids and me at home and they have been helping but I really try hard to act normal in front of them. I was trying to look up how to live with post concussion syndrome and I came across your article. Now I feel like at least there is some hope. It is a horrible feeling to just not feel like yourself. Thank you for writing this and understanding.

  22. concussionkate

    Hi Minda,

    Your mom posted on my blog and shared your story with me. I had a concussion 4 1/2 years ago after having multiple other concussions throughout my life before. This was my “one too many”.

    I’ve tried so many treatments and alternative therapies, medications. I’ve seen countless doctors and finally had ACDF (disk replacement) surgery in my neck a year ago. I am going to look into getting the LENS treatment and I have followed your mom’s guidelines to finding a doctor in Denver where I live now.

    I have improved a lot since the beginning. I shudder reading your story and remembering how awful that was. I’m able to be involved in physical, social, and mental situations now on a limited basis, but I still am nowhere near the endurance that I had before my head injury. My endurance varies depending on what I’m doing.

    Can you tell me if you are 100% better again? Do you still deal with any lingering issues? Do you feel like yourself again? I’m wary about getting my hopes up to try a new treatment for me if it’s not going to help me move past this current plateau that I’m stuck in.

    Thanks, Kate

    1. Minda Haas

      Kate,
      welcome! I’ve got your blog open in another tab for after I respond to this comment. But thank you in advance for sharing your story too. People who’ve never experienced or known someone with PCS cannot understand it without people like us speaking up!

      I won’t say I’m 100%, and it’s unlikely I ever can be. I still have a somewhat diminished amount of energy (although I’m not so young as I was before all this started, so that’s a part of it). I think I still get more migraines than I used to.

      Overall, I always still feel like I’m a little bit….LESS…than I’m supposed to be. Still a little tired, still a little less able to adapt to changes in my sleep schedule, still a little more affected by strobelights, loud noise, bad fluorescent lights, and so on. And I still have nagging fears about my PCS symptoms coming back. Any time I hit my head, even if it’s very softly, I get scared that everything’s going to fall apart again. Some days I do feel like my recovery is a delicate house of cards.

      And I understand completely about not wanting to get your hopes up. In a lot of ways, having hopes destroyed by doctors was the worst part!

      With all that said, LENS was the only thing that even began to make a difference for me, and my provider is the only doctor who listened to me instead of dismissing my symptoms with platitudes like “it’s probably just hormonal” or some such crap. I have my life back. I’m able to work two jobs and support my sports photography habit. I have a boyfriend, which must mean my ability to have feelings and share them is back to where it should be. :)

      I will be following your blog now. If you decide to pursue LENS, good luck!

      1. concussionkate

        Thanks Minda,

        I’m on my way to the consultation now. I’ll let you know how it goes :-)

        1. concussionkate

          The consultation was good and mostly it was just great to have someone finally understand and say they might be able to help! I go for my QEEG tomorrow. Thanks for the lead!
          -Kate

  23. s-concussion

    I had a minor concussion a bit under 5 years ago and woke up with similar symptoms a few days later. My life stopped at that point, and I’ve been suicidal on a daily basis.

    I’ve been to psychiatrists, psychologists and neurologists, had my blood tested (twice), gotten an MRI, CT, EEG and more. They all showed up fine, so the doctors all concluded that I’ve got a depression and need to “get on with life”. I got psychotherapy and tested 5-6 kinds of medication for all kinds of disorders, none of it helped. I gave up on doctors and psychiatrists after this.

    Even though it’s widely known that concussions can have these effects, most doctors I’ve been to wont even consider that my brain actually is injured. They try to point things out in my lifestyle, such as “you’re not exercising enough”, “maybe you need to be more social”, “eat better food” or the most annoying one, “it’s because you’re thinking about it so much”. (My lifestyle wasn’t bad the first 2 years after the symptoms begun, better than average I’d say. During the period it started, my lifestyle involved plenty of exercise, social interactions, studying, good food etc.).

    So here I am now, reading this post. I’m glad there are people like yourself who get well, and I hope these problems are brought to peoples attention, and more importantly, researched and dealt with. I don’t have much energy to live to be honest, I’ll try a few more things out and see where it goes (like the LENS treatment that helped you). If nothing helps, then I hope my mom forgives me and moves on…

    1. Minda Haas

      S,
      I’m so sorry to hear you’ve been struggling with this, and that the doctors have been so unhelpful. Honestly, your story breaks my heart.

      I was thinking about it for a while this morning, and what you’re going through is like if someone got a huge cut on their arm, but the doctors just kept fussing about the blood that has already run down the arm, but ignored the cut completely. They’re focusing on a SYMPTOM, and ignoring the root cause altogether.

      I’m not a doctor, but it’s likely here that the depression is a symptom of PCS, so if the PCS isn’t addressed, the depression won’t stop. LENS would address the root cause. I hope it can be as helpful for you as it was for me. I make no bones about it – LENS saved my life.

      1. s-concussion

        Hi Minda,

        I will go to UK to try out LENS in a few months.

        I’m glad it helped you. If it helps me too, it’ll mean the world to me.

    2. Mandy Walker

      I know that you feel like giving up, I can relate to you too. When you live with years and years of pain and a reduced quality of life (7 years so far for me..) we have every reason to be depressed and feel like giving up. Other people don’t understand and I have been to a lot of doctors, tried a lot of medications/treatments, tests galore… they can’t find anything!! It’s depressing. Don’t give up on life. If you need someone to talk to, please talk to me. I need someone to talk to too.

  24. Mandy Walker

    Thank you all so much for sharing. I am in tears, because this really hit home for me and has helped me out so much! I have been living with post concussion syndrome going on for 7 years now. I am a senior in college, trying to make in through my last semester. With tests and more and more stress my symptoms are at an all time high… I have had a constant headache since my accident (my freshman year of high school) along with dizzy spells, fatigue, difficulty concentrating and memory problems… the list goes on. I am just not the same person any more and I feel so distant from everyone around me. I feel “fake” because I pretend to be this happy person on the outside but inside I am miserable. I get so irritated and annoyed easily. Sometimes I have this “I just don’t care about anything” attitude. I hate it. I am depressed and I wonder every second of my life when it is going to finally end… or if it will EVER be over. However, thank you all for sharing your stories. It has really helped me just to know that I am not alone. Hang in there everybody!

    1. s-concussion

      Well, you are not alone. I often want life to just end too, daily in fact. Somehow I keep going though, I don’t know what it is.

      I pretty much have the same type of symptoms. The worst part in my experience is not the head aches, memory problems or fatigue. The worst part is feeling distant and not being able to connect with people. I haven’t truly felt like I was alive or like I have had a real conversation with another person since I became like this. Every thing is foggy all the time. When I see certain movies I remember how life used to be, and could have been, and become really sad.

      Often I just bite my lip and reason: “I guess I’ll be one of those people who just won’t live a good life in the normal sense. I won’t be able to create connections with people, I won’t have fun conversations, I won’t hang out with friends, and will be a generally lonely person for the rest of my life.”

      I try to think of something worse than this, but truth be told, I’d rather have cancer or lose a few limbs (they’re the less bad alternatives).

  25. Serious Accident - Claim 4 Pi

    Great thoughts you got there, believe I may possibly try just some of it throughout my daily life.

  26. Trish

    I just happened to stumble upon this while looking up PCS..only a week ago I bailed super hard and landed HARD on my face (on staggered concrete) with no chance to brace myself or anything. I blacked out completely for no idea how long, and woke up to find myself trying to get up with a blood soaked face. ( sorry, not the prettiest picture) My face is still quite the mess and only having been out the few times I have has taken every ounce of energy out me. I’m quite lucky to have a fantastic GP that has acknowledged that I am still unable to stay awake for more than twenty minutes at a time, so I’ve had two in person follow ups, and he has phoned to see how my symptoms are. Being a bit more awake today he talked to me about post PCS and that there’s a good chance I would have to deal with it for a while. Since it’s still so fresh people have been very understanding but I have found it extremely difficult to explain what’s happening to me. I’m so glad to have read this honest and heartfelt tale of the possibility of what I may face. It’s taken ages to just type this out and I’m pretty sure I napped part way through, It’s great to hear that you’re feeling better, and I will probably be using some of your descriptions to help explain how I feel. I’m so sorry you went through all you did though, just from a week of it, I can understand why you’d be feeling so broken after so long. I’m truly hoping I’m making sense right now, and I wish you all the best in the future. Thank you for this!

  27. Stacey

    Thanks for sharing your story, I am 47 and a bookshelf collapsed on my head at work. I am struggling with post concussion syndrome and waiting to be seen at a concussion clinic. I am devastated that I sseem to gave lost all of my creativity. I have gone from working 2 jobs at 50+ hours aweek- with children/teens always being fun, spontaneous, and bubbly / to not working, driving basically not able to do anything Without getting terrible headaches, carsickness and feeling exhausted and like a may pass out. I never understood how bad a concussion affected your entire life, but now I know it really sucks. curious About The mac and cheese? Why?

  28. Martin

    Hi minda,

    What a great story you have. Curious how many lens treatments you had to help you? Also for how long post concussion did you suffer from ringing ears?

    Thanks.

  1. Even I’ve lost patience with the Royals. Let’s get the pitchforks! » mindahaas.net

    [...] some, but even at their worst, there are much bigger problems in the world at large, and even in my own life. So, whatever. Let’s go drink a Royal ‘Rita at The K and hope for a win. If they lose, [...]

  2. KC Headlines: Tony Gonzalez, Brain Injuries, Blind Goal - KC Kingdom - A Kansas City Sports Fan Site - News, Blogs, Opinions and More

    [...] is an excerpt from Minda Haas’ personal story of an issues she had after suffering too many concussions. It is a tremendous piece, and everyone [...]

  3. Concussion stories from around Twitter » mindahaas.net

    [...] heard my concussion story, so I asked for [...]

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

site tracking with Asynchronous Google Analytics plugin for Multisite by WordPress Expert at Web Design Jakarta.