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


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Old 12-02-2013, 01:34 AM #1
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Default One year mark

Hello friends,
I hit the one year mark a few days ago. I'd love to report that everything is great and I've healed. Regretfully, that's not my story. For hopefully most it will be and I have great hopes that I will continue healing as long as I'm breathing.

My brain is not the same as it was before the accident. I know that but still have a hard time NOT comparing old me to new me. My wonderful neuropsychologist feels that's detrimental to do. I agree. It's still hard not to compare.

I hit a plateau about 2-3 months ago. I still do my therapy and at home work but am now more focused on how to live THIS life. Adapting. My eyes still plague me with movement and tracking. Being in public overstimulates me quickly. The hypercussis is a major challenge also. When my brain is over taxed my speech slows. I really dislike this. I feel humiliation and embarrassment.

I don't drive and I ride in the backseat mostly to block movement. I still practice while in the car but stop when the symptoms are solid. Night time in the car is horrible with headlights so I don't look out at night. Ear plugs and sunglasses go with me everywhere. A hoodie is good to block over head lights.

I am seeing a pain management dr. No drugs for me at my request. When my headaches/migraines are at their worst I have dark thoughts. I see now how people can abuse drugs while in terrible pain. I've had an epidural on my neck and am preparing for greater occipital nerve ablation on the left side of my neck.

My neck pain is much better after the epidural and I am very hopeful about the ablation. I've had nerve blocks but they didn't last. Hoping to have my headaches/migraines reduced by half or more. Right now headaches are daily. Migraines weekly.

Started neuropsych testing. Brain hit exhaustion after one hour 15 minutes. Will finish the rest in short visits. My memory is problematic. Processing, decision making, problem solving-everything is slower.

Neurologist is good. He's good at what he does but a fast talker.

I've learned that a brain injury is a slow thing to recover from. Vestibular damage is also. I have learned that it's okay to keep letting drs go if they aren't the right fit and therapists too. Support is vital. The people hear help me survive when my days are darkest and teach me. I have also been given the chance to help others here which I'm so thankful for.

My life is very different. It will never go back. At this point I don't feel I will ever run a classroom again. Maybe tutor eventually. My focus is learning how to adapt and continuing to heal.

Thank you to all of you. Peace and healing,
Jace
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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 12-02-2013, 03:35 PM #2
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Jace,

I also prefer no meds. But have been thinking lately what it would be like to get some relief. I tend toward the depressive/anxious side even before the accident. Doc thinks this is hindering progress. Reading your post makes me think that your doc is along the same line of thinking about you (suggesting that you compare yourself to your past maybe too much and its hindering progress). Any chance you'll change your mind about the meds? Why or why not? I'm currently asking myself the same questions. Doc wants me on Cymbalta so it's not Benzo. I'm asking others to chime in here on Neurotalk.

VB
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In July 2013 ran into a metal bar at a playground, remained conscious. CT normal. Headache subsided after a week. In August woke with thunderclap-type headache in right side of head, right eye was droopy. Ever since had electrical-type pulsating all over when falling asleep and during sleep. Strong muscle twitching occasionally. Chest pain in heart region, front left neck region, and left shoulder. Strong heartbeat noise in head and occasional weird noises in ears. Taking Gabapentin to control nighttime nerves. Other symptoms: anxiety attacks, goosebumps, fine motor coordination problems, sleep apnea, headaches/migraines, fatigue, unclear thinking.

Update as of Jan. 2015 - almost all symptoms gone except for some tinnitus. Taking good care of myself except sometimes when I overdo it.
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Old 12-02-2013, 09:31 PM #3
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Jace ur not alone i know and understand what ur enduring, becuase we r all in the same boat. its ur one year and mine is coming up. the time lines dont me nothing...i try to tell myself one day i will be happy, it just not today. i gave up on the time lines they dont mean anything...just hold to ur thought that one day u will be happy.


ED

iends,I hit the one year mark a few days ago. I'd love to report that everything is great and I've healed. Regretfully, that's not my story. For hopefully most it will be and I have great hopes that I will continue healing as long as I'm breathing.

My brain is not the same as it was before the accident. I know that but still have a hard time NOT comparing old me to new me. My wonderful neuropsychologist feels that's detrimental to do. I agree. It's still hard not to compare.

I hit a plateau about 2-3 months ago. I still do my therapy and at home work but am now more focused on how to live THIS life. Adapting. My eyes still plague me with movement and tracking. Being in public overstimulates me quickly. The hypercussis is a major challenge also. When my brain is over taxed my speech slows. I really dislike this. I feel humiliation and embarrassment.

I don't drive and I ride in the backseat mostly to block movement. I still practice while in the car but stop when the symptoms are solid. Night time in the car is horrible with headlights so I don't look out at night. Ear plugs and sunglasses go with me everywhere. A hoodie is good to block over head lights.

I am seeing a pain management dr. No drugs for me at my request. When my headaches/migraines are at their worst I have dark thoughts. I see now how people can abuse drugs while in terrible pain. I've had an epidural on my neck and am preparing for greater occipital nerve ablation on the left side of my neck.

My neck pain is much better after the epidural and I am very hopeful about the ablation. I've had nerve blocks but they didn't last. Hoping to have my headaches/migraines reduced by half or more. Right now headaches are daily. Migraines weekly.

Started neuropsych testing. Brain hit exhaustion after one hour 15 minutes. Will finish the rest in short visits. My memory is problematic. Processing, decision making, problem solving-everything is slower.

Neurologist is good. He's good at what he does but a fast talker.

I've learned that a brain injury is a slow thing to recover from. Vestibular damage is also. I have learned that it's okay to keep letting drs go if they aren't the right fit and therapists too. Support is vital. The people hear help me survive when my days are darkest and teach me. I have also been given the chance to help others here which I'm so thankful for.

My life is very different. It will never go back. At this point I don't feel I will ever run a classroom again. Maybe tutor eventually. My focus is learning how to adapt and continuing to heal.

Thank you to all of you. Peace and healing,
Jace[/QUOTE]
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Old 12-02-2013, 09:41 PM #4
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Default Thanks for the update

Dear Jace,

So good to hear your update. I can read how much your life has changed.

It sounds like you are finding ways to go forward though. Also, the brain and other things heal slowly. Even years after an accident, there can be improvements.

Here's praying for your recovery and everyones who reads this.

Sincerely,

poetrymom
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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 12-03-2013, 02:55 AM #5
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Jace,
My daughter had many of your symptoms at the 1 yr mark. She too carried her sunglasses everywhere--even indoors at times. I believe they are looking at a much longer recovery timeline, then the old standard 1 yr mark.

She is taking meds--but it takes time to find the right meds and dosage. It does help her not get stuck when the disappointments and pain are so great. She also sees a therapist.

Accupuncture helped with head pressure and pn. If you are considering acupuncture, look for someone with experience in treating head trauma. We were lucky enough to find someone here in Santa Cruz, CA after driving for months for treatment 1 1/2 hrs away. If you need to know the type of acupuncture given, I can call and ask--just message me.

At the year mark, things were dark for her. It will get better. She too had months of plateaus.

Congrats on looking for work arounds--Mark seems to be the true work-around king.

Best to you,
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Old 12-03-2013, 05:26 AM #6
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Hi
I am at 17 months now and improving. At one year I was hoping to be my old self, but it hS taken me this long to accept my new self. Since then things have been so much better.

I do yoga twice a week , reflexology once a month and generally keep stress to a minim .
Granted that's difficult at times.
I still wear sunglasses when I go to the cinema and ear UVA when required.
Other than that I continue with my new life, which is now almost like my old life.

I put this down to letting go and taking each day as it comes.
Not worrying about the housework or piles of ironing, etc.
I now break up my work load into segments that I can deal with.
You will improve over time so try to relax and go with the flow rather than against it.
This is what your body is telling you. But I know this is not easy.

You have come this far and it can only get better.
Good luck to you

Carole x
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Old 12-03-2013, 08:13 AM #7
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Hello Jace,
I reached the year mark in October. I know many things have changed since my accident/injury, but I hold onto hope that I have seen progress in some areas within that year. I am a shameful optimist, and I keep thinking that if I have made progress, there might be more to come.

I hope that you can see that you don't necessarily need a classroom to be an educator.
That being said, you have one of the largest "classrooms" on this site in which you can continue to give your own unique perspective and insight, of which I have personally greatly appreciated and benefited from. You are limitless in your potential as an educator, given the opportunities here on this site.

So, it's up to all of us to do as you have done; "learning how to adapt and continuing to heal." It's all a learning process that we just adapt to our current status and press on for healing. Thanks for the update, and I hope you continue to have more recovery. I hope we all do. Take care, Music-in-me





I
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Old 12-09-2013, 10:49 AM #8
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Thanks all,

We were out last night to pick up something and it was snowing. I sit in the backseat most of the time with my vestibular issues and ptsd. I had a great amount of anxiety as we took that short drive. I couldn't remember feeling that in the snow last dec, jan, feb, mar.

I was so lost in my head (disconnected) and sleeping I didn't experience it. I do remember a bad thunderstorm in April. Such fear and panic I wouldn't go to therapy and cried til my family was safe at home.

Day by day. Sometimes forward, sometimes backwards. It's a long recovery and many emotions like to hitch a ride during the early months, especially negative ones. Talk, write, cry, yell...have your moments when needed.

Then move forward a step. Less than 2 weeks and I'm at 13 months. I'm better than I was a year ago. But I'm aware enough to know I'm not what I used to be. That's my battle now. I am hopeful most days. I want a life.

Take care all. Thank you for your words, kindness, and support.

Jace
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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 12-10-2013, 11:52 AM #9
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Hi Jace. Your mail was very well read and respected. I am now at the ten month stage,and have started to believe the neurologist in that I am a 5-10 year recovery patient. But, I am, me and there is no way that they will be right. Even with bad balance, speech and vision problems I refuse to give up. I now go to the gym twice a week and also swim twice a week. All the work I do has been given to me by specialized people to help improve all the defects in my life. The annoying thing at times is that I look normal to people, and it is only when I try to speak, that people notice me. If I concentrate on my voice I can manage to fool people. I walk like I am drunk, so I often think I may as well have a bottle of wine, but know that that would be a stupid thing to do. I used to do show jumping and school difficult horses, but realize that this is something that I would probably be silly to do as well. I am slowly learning about the new person I have become, hard as it may be. All I can say is that we need to accept that we are now very different people physically , but we don't all have to be different mentally. Good luck!
Y
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Old 12-10-2013, 08:30 PM #10
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Confused I'm new at this brain injury thingy

Jace,
Thank you for sharing your one-year mark and your honesty. My car accident was July 29 so I guess I'm "the baby" here. It is relieving to see others experiencing the same symptoms; sensitivity to light, sound, tinnitus, headaches, migraines, slow delayed speech, stuttering, muscle spasms, ptsd, depression, anxiety, along with neck shoulder and hip injury. Im struggling to find "the old me" will I ever see her again?? Also speaking in front of people, I struggle to get the words out. I use to be very funny, and quick with a joke. Now I have the joke in my head but I just can't get it out in time so I choose to just keep quiet.
I constantly find myself in denial. Do I really have a brain injury when I look the same? PTSD? I thought only police officers and veterans experience such trauma. I also wonder if any of you are depressed? One day I will feel content and the next I am crying all the time. I have been going to a Concussion Clinic since the accident, where I see a Psychologist. He has put me on Zoloft and Amitryptaline. Feurocet for headaches.
I have asked to see a neurologist but they tell me a neurologist usually will just send me back to the concussion clinic. He said neurologists do not have a lot of background in concussions. It sounds as if many of you have seen a neurologist.
I have never had an MRI on my brain. I have had a CAT scan which was negative. What will an MRI show that a CAT scan will not?
Sorry for all the questions...I really appreciate all your support
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