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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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07-01-2013, 06:36 AM | #61 | |||
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Shop for great doctors! Neurologist, neuropsychologist, vestibular specialist, Neuro ophthalmologist.
Get an advocate if you are alone. Listen to your body. Write down all your symptoms even if you think it may not be anything important. Find a support group or a neuropsychologist to talk to that will understand what you are going through. |
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"Thanks for this!" says: | Concussed Scientist (07-04-2013), concussedlawyer (07-25-2013), Mokey (08-28-2013), mouse1 (07-01-2013), poetrymom (08-23-2013) |
07-04-2013, 10:55 PM | #62 | ||
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1. Don't go to just any neurologist. If you can't research it, ask someone who loves you to do it for you. Mine was okay, but told me several things that are not true, didn't get me to see a neuro-opthamologist, and just didn't seem to offer me very much guidance. I really had to fight for my treatments, and because my brain function was compromised, I struggled to do this for myself.
2. Ask for help. From everyone who loves you. Help with car rides, emotional support, making appointments, paying bills, child care, etc. 3. Try to get the people you love to understand what you are going through, but if they don't understand, limit your exposure to them or if you can't do that, then take them to therapy with you or to the doctor with you, so that maybe someone else will help them understand. 4. Bring someone with you to as many doctors' appointments as you can. I wish I had done this! You may not be able to advocate for yourself or remember the information you are told. 5. Keep seeking answers until you find them. I had headaches from three different sources – neck injury, head injury, and vision-related issues due to the concussion. It took different treatments to address these three different issues! 6. Denial can kill. Looking back, it doesn't seem possible to me that I didn't figure out what was going on for so long. After my second concussion, I just didn't want to have another medical issue. (I'd just been diagnosed with hypothyroidism.) I didn't want to be a burden to my husband. I didn't drive for three weeks but then determined I was fine. Eight months later, my cognitive symptoms led me to crash my car, which served as a reality check but also worsened my symptoms. 7. Don't trust your doctors, not any of them, not fully. I had a few good doctors, but even the best of them made mistakes. My overworked PCP (whom I loved) sent me to the wrong doctor, so though I thought I'd been given the okay from a neuro-Opthamologist, I'd actually seen a retina specialist but it took me a few months to figure out. My neuro-optometrist actually triggered my biggest setback by putting me through some rigorous tests the day after my vision therapy. An emergency room doctor neglected to tell me about an anomaly in my upper vertabrae that, as it turns out, was causing my headaches. I only found this out by requesting my medical records several months later. By then, a new physical therapist had already figured out and fixed the problem! Doctors are fallible. They are people. It is important not to put blind trust in any of them. 8. Don't push yourself. Don't push past the pain, not even if it's a doctor or therapist that's pushing you. Learn from my mistakes. Take a stand, and don't let anyone talk you into doing something you are not comfortable doing. I've had three significant setbacks, and I've only recovered fully from one of those setbacks. I'm still struggling to get back to the more manageable level of eye pain, strain and photosensitivity I had in February. As of right now, I can't read, write, drive a car, or use a computer without feeling significant eye pain, and I can't go outside without sunglasses and a safari hat. I can't seem to lower my activity level enough to really heal. It's very frustrating! 9. Keep a journal to track your symptoms. It will help you figure out what helps and what hurts you, but most importantly, you'll be able to see yourself getting better over time. It has been very helpful for me! 10. Don't lose hope. I'm still trying to make myself follow this piece of advice, because I am scared that my vision will never get better, but I have to believe that I will be able to read a book and go outside without a hat on a year from now. That would be progress. Those are my goals, and anything beyond reaching those milestones would be a bonus.
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I have recovered my cognitive function, and I've overcome severe vertigo through sensory integration therapy. Wellbutrin has helped me escape depression. I have recently had a few stress-related migraines, as well as headaches stemming from eye strain. I'm also dealing with tinnitus, lack of stamina, extreme light sensitivity, and eye pain. Diagnosed with 9 different vision issues: convergence insufficiency, pursuit eye movement deficit, egocentric visual midline shift, photophobia, visual information processing delays, accommodative insufficiency, saccadic eye movement deficit, lack of coordination, and central peripheral visual integration deficit. *First concussion: October 2010. I was pregnant and got rear ended. I associated my mild PCS symptoms with baby brain and blamed my light sensitivity on allergies and dry eyes. *Second concussion: December 2011. I hit my head on a wooden beam, saw stars but did not lose consciousness, and I had very disturbing PCS symptoms but didn't go to the doctor. *Third concussion: August 2012. I caused a car accident as a result of PCS symptoms. Thankfully no one was injured but me. My husband confronted me, and I finally sought help and took medical leave from work. My symptoms worsened, and I developed severe vertigo. *Fourth concussion: November 2012. I was riding in a car with a friend and we were hit head on by a driver who lost control of her car. I didn't have a big increase in PCS symptoms. |
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"Thanks for this!" says: | Concussed Scientist (07-07-2013), concussedlawyer (07-25-2013), Laura G (08-15-2013), poetrymom (08-15-2013), Su seb (09-15-2013), Wndswptlady (09-09-2013) |
07-09-2013, 12:15 AM | #63 | |||
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I wish I would have known that there are some people, even professionals and loved ones, who just won't get it. And even more importantly, that stressing about them "not getting it" and feeling all defensive and indignant, was NOT worth the energy. It took away my sense of peace, which affected my healing.
I wish I would have gone easier on myself because although it seemed like an eternity off work, it now seems like it was a blink of an eye. Shorter than a maternity leave. And stressing about it did me no good. I wish I would have known how to disengage from the anxiety caused by this injury. But overall I wish I'd learned sooner how to live in the moment, and be grateful. I'm thankful for some suffering to teach me these things, and I pray to never forget. I'm indebted to this place, the advice found here, particularly from the committed members who never give up on us newbies (that's you Mark... Thank you!) and I praise the invention of the ICE PACK!
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About it: October 26, 2012 I fell backward on an icy parking lot at work. I was on Workers Comp for 9 months. My PCS : everyday headaches became once in a while headaches, and neck pain became manageable. Still have occasional mild dizziness, sometimes fullness in the ears, convergence insufficiency, sequencing struggles, short term memory struggles, verbal processing delays. CT neg, MRI neg. Therapies: prism glasses, acupuncture, icing neck, resting, supplementing, Elavil 20mg at bedtime. NEW: Completed 12 weeks of physical therapy and returned to work full time. About me: I'm a marketing manager, a mom with a blended family and wife to a heart attack survivor. I believe my brain injury taught me more than it cost me. I'm grateful to still be me! |
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"Thanks for this!" says: | adougall70 (12-11-2013), Concussed Scientist (07-09-2013), concussedlawyer (07-25-2013), MiaVita2012 (09-02-2013), music-in-me (09-23-2013), poetrymom (08-23-2013), Su seb (09-15-2013), Superstition (12-09-2013) |
07-10-2013, 08:24 AM | #64 | ||
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Things I wish I had known and I now share with everyone who asks:
1. Be present - all of us who have suffered head injuries know that the present moment is incredibly painful. I remember longing for the past when i was in the shape of my life and projecting myself into some greater future. Instead, I learned, in time, to accept where I was right now. Breathing, being. Appreciating the moment as it is. 2. Clean up my diet - I now do not consume sugar (except fruit & raw, organic honey), alcohol, caffeine in any form, pesticides, and gluten. 3. Light exercise can be beneficial - the Buffalo Clinic just came out with a new, conclusive study about the benefits of light exercise after a certain period of time (I believe 30 days) of being Post-Concussive. I look forward to my walks and yoga every day. 4. Change your thoughts, change your world. Where you put your thoughts is incredibly powerful. Choose to put them where you want them to be. 5. Meditate - Once I started to meditate and do visualizations of how I wanted my life to be, I started to heal. I started to read again. 6. Laugh - I went to improv comedy shows to help with the depression. Now I take classes! 7. Know that the body can heal from anything. You are not the exception to the rule. You just first have to believe that you can. With so many healing wishes, Amanda *admin edit* Last edited by Chemar; 07-10-2013 at 08:41 AM. Reason: No links are allowed for new members |
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"Thanks for this!" says: | Concussed Scientist (07-12-2013), concussedlawyer (07-25-2013), jweb (08-05-2013), MiaVita2012 (09-02-2013), poetrymom (08-23-2013), Wndswptlady (09-09-2013) |
08-13-2013, 01:51 PM | #65 | ||
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10 Things I wish I knew when I first got Post-Concussion Syndrome (PCS) "Everything will be all right in the end. So if it is not all right, it is not yet the end." ~ Indian expression from The Best Exotic Marigold Hotel I wish as a former professional writer I knew it could take me a week to come up with this list. 1) Get an Advocate - Find a good advocate to take with you to all doctor appointments: friend, spouse, parent, older child, co-worker - anyone that is willing to be your voice when you can't find your own AND will fight for you. This person should: 2) Find specialists in TBI/PCS - Do your research to find specialists in tbi/pcs. NOT all doctors are educated, experienced or specialize in the nuances of brain injury or PCS. 3) Contact your local Brain Injury Association - if in America here is the link where you can find local resources - http://www.biausa.org/ 4) It's Okay to ask for HELP! 5) 10 steps forward, 11 steps back - My neighbor discovered and made me aware of this process at work watching me over the first 2 years post-injury. 6) Humpty Dumpty Syndrome - All of the king's horses and his men actually can miss some pieces when putting you back together again. 7) Laughter IS the best medicine! Find humor in the small things, big things and ordinary things - laughter can pull you through. My humor can border on inappropriate, dark and twisty. I own it. It's mine. If other's don't understand, it's their problem. (My son nicknamed me "Brain Damage", my mom was outraged, but I laughed until I cried. It felt great!)
8) Silver Linings - Call it a playbook or embracing your inner Pollyanna, but find your silver linings. 9) Coping tools! Sensory overload and beyond... 10) Acceptance While long, I hope my experiences can help another. Best wishes on your recovery. ~Kristy |
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"Thanks for this!" says: | Concussed Scientist (08-16-2013), concussedlawyer (09-07-2013), Laura G (08-15-2013), Margarite (09-26-2013), MiaVita2012 (09-02-2013), Mokey (08-21-2013), music-in-me (09-15-2013), NormaW (08-15-2013), poetrymom (08-15-2013), SarahSmile0205 (03-20-2014), Superstition (12-09-2013), Wndswptlady (09-09-2013) |
08-23-2013, 02:07 AM | #66 | |||
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Just because a doctor has never seen a symptom before means just that. HE has never seen it. It doesn't mean it can't or doesn't exist for you and others.
Shop for the best doctor for YOU. Make a binder with calendar pages to keep track of appts. Make a section for each doctor, therapy, medications, and a daily life section to take notes about your day. Take with you to every appt.
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. *TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015. *Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory. *Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living. *Working on getting to know and accept the new me. |
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"Thanks for this!" says: | Concussed Scientist (04-16-2014), CowgirlCat (04-22-2015) |
08-23-2013, 07:45 PM | #67 | ||
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Since it is so difficult to find a good doctor, it helps to take charge of your own recovery. If a vestibular specialist is helpful, great. Just don't expect every specialty to be able to help.
Concussion and mTBI symptoms are not treated as a group. They should be addressed individually. Some, if not most need time.
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Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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"Thanks for this!" says: |
08-29-2013, 01:59 PM | #68 | ||
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Don't rush! Everything takes a LOT longer to do than before. Rushing will only exacerbate your symptoms, so take a chill pill and relax.
Be honest about how you feel to anyone you trust. They might be able to spot a problem before you even realize it is one. If you feel like you need to take a day off, do it. Listen to your body and your mind. If you don't feel right then don't push yourself. You won't do yourself any favors. |
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"Thanks for this!" says: |
09-14-2013, 12:36 PM | #69 | ||
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Quote:
Finally, I was referred to a Neurology specialty practice in Akron, OH. where I was given a Neuropsychological test(s), which showed moderate to severe cognitive deficits. The road to recovery is still ahead, but I am grateful it was finally properly daignosed, and I continue on... I will be entering a brain injury program soon, thanks to the Neuropsychoplogy tests and their recommendations. P.S. Let your family?spouse/friends be your advocate!! They know you best, and can often see things you can't. Good luck to us all, and keeping you in my prayers!!! |
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"Thanks for this!" says: | Concussed Scientist (09-16-2013), concussedlawyer (09-16-2013), Jimbo de Isla (11-04-2013), Living_Dazed (10-02-2013), Superstition (12-09-2013) |
09-21-2013, 12:56 PM | #70 | ||
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Junior Member
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Grieving the old me. Wish I knew more about realistic recovery expectations. I think I would be farther along if I had understood more about recovery. It is all so immediate and most care providers try to be cheerleaders as opposed to be mentors in a long and often inconsistent process.
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"Thanks for this!" says: | Concussed Scientist (09-25-2013), concussedlawyer (11-22-2013), Living_Dazed (10-02-2013), Margarite (09-26-2013), Mark in Idaho (09-21-2013), music-in-me (10-04-2013) |
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