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


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Old 06-25-2014, 08:42 AM #1
Tmarie23 Tmarie23 is offline
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Default 6 months in hell.

I miss when I used to be tired and I'd take a nap/go to sleep and actually wake up energetic and feeling normal/refreshed, ready to do anything and everything. I was a machine. Worked my *** off 30 hours a week, took 4 classes at college and had a 4.0, went to the gym 3-4 times a week and had an amazing social life; always going to events and to friends houses and baking things to bring over. I don't even know how I fit everything I did into 24 hours each day but I did so with such ease/determination with a smile on my face. I loved my life. Everything was so easy, I was so motivated, I took pride in my compassion and intelligence and being involved. I don't want a "new me". I loved who I was and I loved feeling great. I took so much pride in my brain and how productive I was. I became the person I always wanted to be/dreamed of being.

People always say it gets better, and "you will recover", but what is really meant by that? I don't want to work around things. I don't want to feel like **** constantly. I don't want to be limited on what I can do, when I do it, how often I do it, or how I do it. I want my damn freedom. I don't care if I sound like an ungrateful "brat" or whatever. This isn't me and it never will be. This blows. I hate being around people too. I'm so bitter. They're all so lucky and they don't even know it. I envy them so much that I just hate being around them. I'm insanely jealous of everyone I see.

I never have a "good" day. My "good" days are worse than my worst imaginable day pre-injury. I NEVER feel normal, or good. The only times I do things or get anything done is when im pushing myself. I don't want to push myself, or force myself. I just want to LIVE. And FEEL good while doing it. Not "drag" myself through life. What kind of life is that? I'm definitely not feeling positive and I'm frustrated/angry. I'm so tired of this. I feel myself just getting more and more angry. All I want is me. I want to go to Barnes & Noble and order coffee and not be overstimulated and read a damn book. I want to go on the boat with my dad. I want to go camping and white water rafting and DO things and NOT feel weird/like ****. I want to not see and hear everything at once.

Is this life? Is this what I have to look forward to? Worrying about how shitty I feel constantly and dancing around symptoms? Does it actually get better, or do people just get used to the hell they're living in? Although, I don't ever see myself getting used to this, I can't do anything. How the hell am I ever going to support myself? Can't live with my parents forever.
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Old 06-25-2014, 09:58 AM #2
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I am at almost 6 months as well... I have the same feelings... I want my life back... I want to run and play with my kids... I want to go to concerts with my husband... I want to go on vacation... and right now... I am stuck inside... doing one activity at a time...

I talked to a friend who is a neuro-radiologist and she said that it may take every bit of a year to 18 months to get back to where I was... that was a low blow day but I think back to the first month, and there has been progress... a little but progress.
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The Start: MVA, t-boned, on 1-12-14 (my sons 5th birthday) and did not think anything of it.. my back hurt on site but everything else seemed ok. Lost about 10-12 hours from about 3 hours after the accident to the next day...Experienced terrible brain fog for over a month, plus intense headaches, nausea, dizziness, cognitive difficulties, disorientation, no short term memory, depression and just an overall hangover feeling daily.

Current Situation: I'm about 7 months in and my local neurologist has waived her white flag and therefore I am headed to Dallas to be seen (I have family there). The headaches are still daily. I have nausea, dizziness as well.

Drugs I have been on- Vicodin (off), Naproxen (off), proanolol (off), topamax (off), cataflam (off), Midrin (off), Flexeril (off) and now Namenda XR (off), Nortrptylin (off), Verapamil (off)

Therapy- Osteopath, Vestibular and balance therapy, fuzion/soft tissue massage, acupuncture

Drs- ER (no help), GP, Chiropractor, Neurologist and Osteopath
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Old 06-25-2014, 12:05 PM #3
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At this point, I don't even care if it takes 18 months, just so long as it goes away and I can have energy and feel normal and be able to live again. And I've been in this constant dream like fog for the past 6 months. I can't live like this.
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Old 06-25-2014, 12:15 PM #4
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I think most of us on this forum go through this struggle, I certainly know I did and still do.
I used to be very outgoing/social, could literally climb mountains even when I was out of shape, etc...
Now I barely can make it through a work day, go home and rest.
On the weekends I try to have some limited social interactions with friends.

I do know that it is VERY SLOWLY getting better for me.

One of the best things that is helping is careful limited physical exercise, even if it's just a walk.
One of the worst would probably be the fact that no one around me (including doctors and my family) really understands what I'm going through, most people think that I'm just weak and don't have any will power.

Unfortunately there's no shortcuts in our recovery and it's up to you to be strong and push through it. Keep looking for things that might make it better for you. An AO chiro was my significant find, that turned my recovery in the right direction.
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12/02/2012 - Light concussion at boxing practice. Ended up having PCS for about 3 months.
March 2013 - Thought that since most of my symptoms resolved I could start having fun again.
Went snowmobiling once (didn't hit my head) and concussion symptoms returned and got even worse than before.
June 2013 - accidentally bumped my head against a deck railing, and had a month-long setback.
November 2013 - drove to work after a big snowstorm and the roads were very rough, ended up having another setback.
2014 - Having setbacks after coughing/sneezing too much, or someone slapping me on the back, or any other significant jarring.
Feb 2014 - Started seeing Atlas Orthogonal chiro - most helpful doc so far.
June 2014 - Two months of physical/visual therapy - no noticeable improvement.
September 2014 - Diagnosed with Perilymph Fistula in right ear.
November 2014 - Fistula surgery (switched to left ear before the surgery after additional testing).
January 2016 - Quit work to "work" on figuring out PCS, so far it seems that eyes/vision issues are the most contributing factor, especially computer work.

Current symptoms are: inconsistent sleep patterns, headaches, vertigo/dizziness, anxiety/panic attacks, mental fog/problems with concentration, problems with computer screens.
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Old 06-25-2014, 12:31 PM #5
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Yeah, I had to quit my job, and I had to drop out of college, and stop driving. I just don't have the energy/concentration to do any of it and it would also feel unsafe since I get unsteady/vertigo like sensations all the time. I never feel good. I can barely get up throughout the day. My entire life is gone.
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Old 06-25-2014, 01:01 PM #6
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I am so sorry you have to go through this. I am at my 23 month mark. I am about to get fired from my dream job (I was on the tenure track as a college professor--yes 9 years of studying to get my MA and Phd. Then getting a tenure track job, publishing my book, etc.).

I have a husband and 3 children. I was in bed for almost 18 months off and on. Vertigo migraines. Binocular vision and post-traumatic vision syndrome. Not able to read or to play with my kids. I watched them come home and leave.

The past 2 months have been better since getting of nortryptiline and being on topamax.

I am still not able to read or to be on the computer for more than 60 minutes now, but it's up from 0 minutes from before. And I'm an academic!!

It does get easier. Each day - slowly. And everyone has a different learning curve.

There is no way around it- the change is different, and it sucks. It's not fair. But I do think that my life before was very stressful, and I will emerge changed and perhaps better.

I think it is called "post traumatic growth" - the thoughts and associated growth after trauma.

I'm venting a little here, because my doctors this week did not release me to go back to work. When I notified the university, I could tell that they were about to send the letter "thank you for your service, you are hereby terminated."

So, I also need to move on. And we all will survive this label of pcs--and I guess that is just it. We survived!

It's another day to do better and to feel better. We will get out of this hell to somewhere better....

So thank you all for letting me write this-I have appreciated all of you. And I know you will all improve. Day by day.

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The event: Rear ended on freeway with son when I was at a stop in stop and go traffic July 2012. Lost consciousness.

Post-event: Diagnosed with post-concussion syndrome, ptsd, whiplash, peripheral and central vestibular dysfunction and convergence insufficiency. MRI/CT scans fine.

Symptoms: daily headaches, dizziness/vertigo, nausea, cognitive fog, light/noise sensitivities, anxiety/irritability, fatigued, convergence insufficiency, tinnitus and numbness in arms/legs.

Therapies: Now topamax 50mg daily; Propanolol and Tramadol when migraine. Off nortryptiline and trazodone. Accupuncture. Vitamin regime. Prism glasses/vision therapy. Vestibular therapy 3month. Gluten free diet. Dairy free diet. On sick leave from teaching until Sept. 2014.
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Old 06-25-2014, 01:17 PM #7
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I'm sorry to hear that. That must be very hard :/. I just can't imagine going through every day feeling like this. I just want this to go away. If it doesn't I have no idea what I'm going to do.

I've been diagnosed with convergence insufficiency by my neuro optometrist, and she says my focusing system is extremely slow. I'm going to be starting vision therapy as soon as workers comp approves it. Hopefully that will do something. I'm also restarting physical and vestibular therapy.

I'm so tired. I want to go take a walk, or go do something, but then the thought of getting up/moving makes me want to cry. I feel like my body is going to just shut down and waste away.
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Old 06-25-2014, 05:38 PM #8
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Default Brain healing is sllooowwww

Hello everyone

yes, it's a long slog getting better. I know I felt some sudden uplifts along my pcs journey and you might get those too. No 2 healings are just the same though.

I got some comfort from the book Brainlashed by Gail Denton. She is a therapist who got a tbi. The chapters are short and you can likely get or order this book free from your public library.

Hang in there. Your brain can heal. You will never be just as you were before your accident, but you might even be a better person on the other side of healing. I am.

Hope you can find something positive in you day.

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 06-25-2014, 05:55 PM #9
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My thoughts exactly. This has been so hard. Its been 7 months now. My friends are all enjoying their summer and i tend to get left behind because i can't do many things with them. Not that i blame them, but I'm extremely jealous. I miss my life. Im 24 and i feel like I'm old sitting indoors with a hat and sunglasses because my eyes are so sensitive to the sun.

I live with my boyfriend of 5 years and i can tell it is really hard on him as well. He's been amazing taking care of me and being my support through everything but he is getting burnt out. Im constantly worried that this is going to ruin our relationship now. Im not the same person I used to be. Fun, loving and spontaneous is now cautious, irritable and in pain all the time.

Im hoping things start to speed up now. fingers crossed
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Old 06-26-2014, 05:09 AM #10
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I'm 3.5 months in and I too miss sleeping and feeling refreshed in the morning. I remember waking Sunday mornings totally relaxed stretching out like a cat and contemplating putting my mountain bike on the back of the car and heading for the hills... sigh. Touch wood most my symptoms have faded but I'm still left with terrible fractured sleep which is debilitating and some tinnitus - the stubborn symptoms. Gradually reclaiming my life back but it's slow work.
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