Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 06-23-2013, 07:13 PM #1
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Originally Posted by Concussed Scientist View Post
Please use this thread to post advice for new members along the lines of "if only I'd known that when I first got post-concussion syndrome".

Most of us are probably struggling with our symptoms trying to cope with our situation and find the best treatment. It is a learning process that unfortunately takes a while, but we do learn things along the way, things that would have helped us had we known them at the beginning.

Here is your chance to pass on what you have learned to any new people to this forum, who will doubtless be hoping that someone has some guidance for them in dealing with this horrible condition.

Perhaps this thread might help others not to waste time and energy before finding something that helps them.

Everyone is different and in different situations but, if enough people share their experiences of what they have learned, perhaps new readers will be able to pick out something that will work for them.

CS
My traumatic brain injury caused visual issues (midline shift syndrome and post trauma vision syndrome). I wore bifocals before the concussion and assumed I just needed new glasses to correct the blurriness and double vision. I went to eye doctor after eye doctor before I stumbled across an eye doctor who understood it was my brain not my eyes that was the problem. THE doctor to see is William Padula in Guilford, CT. He has patients who come from all over the globe and is the best in diagnosing and treating these conditions. The other suggestion for PTSD/TBI is Hyperbaric Oxygen Treatment. There is a national study taking place right now (I just completed the treatment). It is amazing the results - it is non-invasive and no drugs are involved. I saw improvement in everyone in the study and think this is where treatment for a head injury should start. It works on healing the brain. It's used all over the world for head injuries - we're slow to the party thanks to the drug companies
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Old 06-24-2013, 11:04 AM #2
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I am glad HBOT worked for you. Studies show it to be of minimal if any benefit for the vast majority with PCS who do it, even after 40 to 80 treatments. It is a very expensive treatment before any benefits are even recognized.

Personally, I had high hopes for HBOT.
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Old 06-24-2013, 01:06 PM #3
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Default I also wish I known

I wish I new I had a concussion first off.Second I wish I had direction and help instead of using alcohol for pain.Alcohol and cognitive impairments made my cognitive impairments severe
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What Happened: In 2011 I was in a MVA
.


Symptoms: Physical: I am always cold in any season!!I cannot tolerate anything pressure on my head(sun glasses,hats)longer then a hour,Lock jaw/Displaced TMJ, Dropsey, Hands go numb, Arms go numb, back of head numb (when asleep),Muscle spasms in face & upper body,migraines, concentration headaches, dizziness, nausea, neck and back trauma (from accident), tinnitus, extreme light sensitivity, noise sensitivity, EXTREME fatigue, impaired vestibular system, balance off, Pupils NEVER equal, disrupted sleep cycles,speech problems.

Cognitive: Cognitive Behavior, Brain fog, impulsivity, speech problems, word finding problems, slowed processing speeds, impaired visual memory, impaired complex attention

Emotional: Unable to handle stress or overstimulation without getting extremely irritable or angry, easily overstimulated, MAJOR depression, major anxiety, Panic attacks

Treatment so far: Treatment for PCS,PTSD,Depression & panic,Vestibular therapy, Physical therapy, Vitamin Schedule,Walking,No Dairy, No eggs, No caffeine, No artificial coloring, Sleep with 2 pillows, Very little sugars consumed, Eat healthy,No alcohol, Medications, limit stress and overstimulation.

~*~Learn to treasure yourself and your Divinity. Be willing to accept yourself completely. Be yourself, be graceful, be kind, be wild, be weird ... be true to yourself~*~
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Old 06-30-2013, 10:28 PM #4
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Default Multiple Impact Syndrome

I wish I had known that having more than one concussion can be a real game changer for brain recovery.

If you have had more than one concussion -- I had one when I was 9 or 10, then you're at risk for more problems.

I can't articulate it, but multiple impact syndrome is at stake for you, and then PCS too.

Take care of your brain and take care of yourself!!
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[SIZE="1"]What happened. I was in a car accident 2-23-2013, and got a mild concussion from it. I had some time off for brain rest, got somewhat better, but slipped into PCS in March 2013.

Symptoms I had: dizziness, light and sound sensitivity, fatigue, tinitis, occasional headaches and migraines,

Symptoms as of 5--2013: poor sleep, tinitis, some confusion /short term memory blanks, balance. The other symptoms are mostly gone, but flare up if I OVERdo something.

Therapy I had: vestibular

3 months in: I could drive more and for longer distances. I felt like a younger, happier version of myself and I feel so blessed to have this feeling.

9 months in and I am working full time. I do get tired, and some sound and light sensitivity from time to time, but mostly I am over most of my symptoms.
I pray every day and I m praying for your recovery.

Over a year in: I can multi task (limited) and have humor in my life. But when I am tired, I am very tired.
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Old 07-01-2013, 06:36 AM #5
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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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Old 07-09-2013, 12:15 AM #6
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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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Old 08-13-2013, 01:51 PM #7
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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:
  • take notes,
  • educate themselves on tbi/pcs to know what questions to ask,
  • know your symptoms & your progress,
  • ask for copies of your records to keep for the future,
  • coordinate your healthcare when you cannot,
  • won't take "no" for an answer and do anything it takes for you to get the best care available.
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.
  • I never thought to ask a local tbi specializing attorney for their doctor referral list, but hindsight allows me to see they know the right specialists to see for tbi/pcs. It doesn't hurt to ask even if you don't need an attorney.
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!
  • Asking for and allowing someone to help can be a humbling experience. It's hard, I know.
  • Allowing others to help you can empower them with a sense of purpose which also empowers you.
  • Be as specific as you can regarding what help you require.
  • Communication is complicated when you can't find the right words to ask for your needs to be met in the first place. It's a learning process on both ends. Keep asking. Don't give up until your needs are met.
  • Understand that loved ones might fail you when you need them most. It happens. Let it go and move on.
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.
  • As the brain rewires itself making new neural pathways: some symptoms might improve while others regress.
  • It sucks.
  • It is frustrating.
  • Don't let this discourage you. It's part of the process.
6) Humpty Dumpty Syndrome - All of the king's horses and his men actually can miss some pieces when putting you back together again.
  • You might feel: broken, that you lost yourself, confused, hollow, missing all your puzzle pieces, like an alien in your own body, not know who you are anymore, like you have memories of another person's life that is no longer your own AND are stuck in a strange body without the benefit of a users manual on how it operates. It is a surreal sensation.
  • This sensation is more common than I thought.
  • You are not alone.
  • If you feel this way - Welcome to the adventure of a lifetime! You get to discover a new you. Hold on to this thought when depression envelopes you.
  • I wish I could see this sensation as a gift of rebirth when it hit me, but I had to go through the grief process to accept the loss of the former Kristy to see this new one is just as good, if not better.
  • Stop the negative thoughts and replace them with positive ones. My son put sticky notes on the fridge to remind me.
  • Fake It Until You Make It - does in fact work.
  • You will make it through.
  • Coping Tools: Antidepressants, counseling, friends, family, furry friends, co-workers, classmates can pull you through - if you let them.
  • Friends remind us who we are when we forget.
  • Coping Tools II: Find new traits, abilities, skills, interests about you NOW to fill the void of loss.
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!)
  • Laugh at yourself.
  • Laugh with others.
  • Laugh with joy at your progress.
  • Laugh with tears if you regress.
  • Laugh when you cannot find your words - it beats frustration. Literally.

8) Silver Linings - Call it a playbook or embracing your inner Pollyanna, but find your silver linings.
  • Seek them out anywhere and everywhere - especially when you don't want to. Fight for the positive. It helps.
  • In order to accept losses, it helps to fill the void.
  • List your progress so you remember how far you've come. I forgot, the reminders helped.
  • Make a list of the bad and find a positive that came from it. Update the list. Sooner or later you will see the positive outweigh the negative.
  • * I lost: my car, career, house, income, lifestyle, ability to walk & talk, my brain doesn't do techy geek anymore.
    BUT
    * I gained: the ability to draw, a profound inner peace I never knew, deep compassion for the suffering of others, inner strength, learned how to live in the moment, I learned how to really listen to others, I still have something to offer, I'm more knowledgeable about tbi/pcs than some doctors, I'm an excellent massage therapist that specializes in brain injuries.
9) Coping tools! Sensory overload and beyond...
  • Fatigue - sleeping is ok. You're not lazy, you have a brain injury where sleep allows your system to repair damage.
  • Brain Fog - Bodywork like: Massage, Shiatsu, Reflexology help ground you in your body. WARNING: sometimes our body is in so much pain it copes by altering awareness. Once fully grounded in your body, you may become aware of how much pain you're body now feels. The pro is the pain can now be addressed.
  • Light sensitivity - Sunglasses. Try different colors and levels of darkness for inside and outside use. Go cheap and buy several for each purpose and multiple locations.
  • Noise sensitivity - Noise canceling earbuds, plugged in to music or your pocket help filter out ambient noise. See an audiologist who can diagnose if you have physical ear damage or possibly hyperacusis where your brain can't filter the noise - musician ear filters can be prescribed. The filters run about $80 US/ear. Earbuds are an alternative if you can't afford the custom filters.
    * Close your eyes to listen - Many times sensory overload prevented me from being able to hear conversation directed at me. I learned by closing my eyes (effectively shutting off visual sensory input), I could hear and better comprehend what was being said. It was a Duh! moment. WARNING: I advise explaining your actions to others before shutting your eyes as... ahem...they find it rude unless they understand what you're doing. ;-)
  • Focus - My neurologist (also ADD/ADHD knowledgeable since he's experienced misdiagnosis of ADD w TBI) stepped out of the box to try ADD meds. It took awhile to find one that worked. This is the closest to feeling clear minded since my accident 6 yrs ago. Not all doc's approve of this treatment, but hey - it's worth a discussion.
  • Limits or Boundaries - Learn your limits. Others might try to tell you not to set limits because you're setting a mindframe of limiting yourself. Limits are more like boundaries that change as we do: they are flexible, they expand, they contract. Limits are good. Limits DO NOT mean you are limited. Limits are a stop-loss boundary: They tell you where you need to stop before you find yourself drained, emotional lability sets in, you over exert your physical body, you drive before capable, you do damage, etc.
10) Acceptance
  • Does not mean giving up! - Accept where you are so you know your limits for your own safety. Reset the bar constantly to move beyond.
  • Change happens: your brain constantly rewires itself, relationships come & go, you may lose and find yourself over and over again. It's all okay. Change is the constant! Make it work for you.
  • There are NO RULES - regardless of what doctors might believe.
  • "No" is not always the final answer.
  • TBI/PCS does not define you.
  • Others will not understand. It hurts. Let it go what you cannot change.
  • Others will want you to be who you were before. Life experiences change us, we cannot go back. Move forward even if others cannot.
  • Education on TBI/PCS is needed - become an educator.
  • You might never get the life back you had before PCS. Make a new one that suits you.
  • Anger can be a great motivator - use it constructively while not lashing out at others.
While long, I hope my experiences can help another. Best wishes on your recovery.

~Kristy
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Old 08-23-2013, 02:07 AM #8
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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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Old 08-23-2013, 07:45 PM #9
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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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Old 08-29-2013, 01:59 PM #10
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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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