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


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Old 07-10-2012, 10:37 PM #1
Michaelabella Michaelabella is offline
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Frown I really just need to hear some kind words

I’m really sorry to bother you all with this, because I know that so many of you are suffering much more than I am. I’ve read many entries posted in this site, so I know the circumstances of some the injuries and suffering are much more severe than mine. But tonight I really just need some kind words and someone to tell me everything is going to be alright. Even though no one out there knows me, I just want to hear the words; everything is going to be alright.

I am so very tired of dealing with this. I want to fall on my knees and cry out, “somebody please help me”.
I have support from my family. I have had excellent care and encouragement from my osteopath, physiotherapists, acupuncturist, but I feel so alone. I feel this website is all I have.

I’m so tired of feeling so terrible. I tried of complaining. I'm so angry at the fact that a couple of “bumps” in the head has reduced me to something so weak, so broken physically and emotionally, that I times are really can’t stand it anymore.

I hate this rollercoaster ride of feeling the tremendous high when I’m having a good day and incredible lows when I’m having bad days.

I try to be positive, try to encourage myself, but it just gets so hard sometimes. I really think I’m losing it, I fear that I’ll never get my life back. I’m afraid I’ll remain “defective” than I’ll lose my independence, lose out on achieving my dreams. I don’t know what to do.

Thank you for listening.
Michaela
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Old 07-10-2012, 11:38 PM #2
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Michaelabella,

You are going to be alright!

Just know what you're feeling is normal.

Can you explain a bit further of what is concerning you?

I was diagnosed with PTSD I won't get into that right now but I doubted it until I went to work for a meeting and had my first ever panic attack. Just being there made me ill.

So I've been an emotional wreck today and can say without a doubt I know exactly how you feel!

We'll get through this together! I know it!

Best Wishes,

Kelly
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I have PCS, PTSD, Panic Attacks, Occipital Neuralgia, Ataxia.CT normal.
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Old 07-11-2012, 12:56 AM #3
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You can get through it. The secret I've found sounds trite, but it really does work. Take it one day at a time. I've been doing just that for over 36 years. Most of that time I was NOT on pain meds. Don't worry about the rest of your life; just make it to the end of today, and let tomorrow take care of itself.

One other thing: you are not alone. No-one is, ever. Even if you want to be. Even if it seems like you are. We are all connected.
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Passenger in auto wreck, mTBI:
  • CHRONIC FATIGUE SYNDROME
  • MYALGIA (generalized muscle pain)
  • MIGRAINE HEADACHES
  • INSOMNIA
  • ANGER & SELF-CONTROL (going "Frontal")
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Old 07-11-2012, 01:42 AM #4
Scott in Fenton Scott in Fenton is offline
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I'm right there with you Michaela; for 45 years I was a rock, I never got sick, never broke a bone, never needed doctors. Or Lawyers, but that's another story. And now, as you said there are plenty of people who suffer more than I do, but I can't help sometimes just wanting to scream about it.

My wife does everything now; my job around the house is keeping up the dishes and cooking on occasion, when I can handle it. I haven't worked in 7 months, don't expect to be going back anytime this year. Our finances are on the brink of disaster, and are totally dependent on a judge it seems. Worse of all, no one has really taken a good look at me or where my issues are; I'm starting over with a new neuro next week, hoping to get some nerve testing done.

What I can tell you is, I take my strength from my family; my wife, especially. If it were not for her, I could not get through this. I put all my faith in the strength of our marriage, and let go of things. Then I focus on what I need to do to get better. My recovery is my job, right now. And that job is not yet finished, so I keep my head down and forge ahead. Things will work themselves out; I just have to stay focused on recovery.

And everything else in the above posts, too; we're all in this together, so take advantage of this board anytime you feel the need. PM some of us if you want. We're a cabal, almost. Hang in there and try to let go of the frustration because there really isn't anybody you can yell at to make it different, it's just something you have to get through. Like a traffic jam, really; once you're buried behind a thousand other motorists, what good does being frustrated do? You're car ain't moving. Except it is, and you do get out of the jam eventually.

Good luck and take care,

Scott
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Old 07-11-2012, 02:08 AM #5
sospan sospan is offline
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Michaela,

One thing that you can rely on - is that with this forum you won't be alone and will always be with friends
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Old 07-11-2012, 07:40 AM #6
SmilinEyesMs305 SmilinEyesMs305 is offline
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Michaela,

We are right there with you. And 16 months later, I still have times where I want to scream, want to be done with this, want to get my independence back completely, want to be "normal". I know how overwhelming this feels.

I know it's been said already, but one day at a time is the only way. When you have a day, where you wonder if it's going to be all right, if you can continue living this way, if you can one day be independent again... allow yourself to feel that way. I've found trying to push through those times or trying to make myself feel guilty that other's have it worse, only makes me more upset and depressed.

You are allowed to feel this way. But know you aren't alone. And tomorrow may not seem as bleak as today.

Take moment to enjoy a small pleasure... a piece of chocolate, a quiet time to yourself, noticing a small act of kindness someone does for you, etc. Its the small things around you and small victories you have to cling to. If you try to look too big picture, it can be too much. But the small things start to add up over time. You will be okay
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What Happened: On 3/8/11 I was stopped waiting to merge into traffic when I was rear ended by someone doing 45 mph. I walked away from the accident, to fall into the pit of PCS 5 days later... (I have had 2 previous concussions, but neither developed into PCS.)

Symptoms 3 Years Post: Physical: migraines, infrequent vertigo, neck and back pain (from accident), tinnitus, visual field deficits in left eye, problematic light sensitivity, (including visual seizure activity), noise sensitivity, EXTREME fatigue, semi-frequent disrupted sleep cycles,
Cognitive: semi-frequent Brain fog after cognitive strain, limited bouts of impulsivity, unable to concentrate for more than short periods of time without fatigue, word finding problems, slowed processing speeds, impaired visual memory;
Emotional: easily overstimulated, depression, anxiety;

Treatment so far: Vestibular therapy; Physical Therapy; Vision Therapy; Vitamin Schedule; Limited caffeine; Medications; attempting to limit stress and overstimulation; Yoga; Cognitive Therapy
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Old 07-11-2012, 12:13 PM #7
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Yes, I know how you feel. It is horrible to endure this day in and day out, with the prospect of your life being altered forever. I wonder whether things will ever be close to the way they were. It is a scary feeling. There is no way around it. The cliche (one day at a time) is nice, but often doesn't do the work we want it to. Still, it seems the best one can do. Try to hang in there; we are all in the same boat (hopefully pulling ashore soon!). We all know how difficult it can be. The only thing we can do is hope for one another to get better--and hope that medical science improves to treat TBI in the future.

Best wishes.
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Old 07-11-2012, 01:07 PM #8
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It's the feeling that you LOOK normal and no one can see the fight you're going through that scares me the most, and makes me feel weak and guilty. But I've learned to begin treating myself more gently and not feel guilty for having a bad PCS day. That's hard. I spent many years taking care of family members with anxiety disorders and now I feel like I'm the one who's a burden. That's hard. There are some days when I've been wearing the "normal" mask for too long and I just lean back and tears start rolling down my face and I can't stop them, even in front of my family and loving fiance. There are days I've screamed "It's NOT FAIR!" I know we're taught from an early age to get used to that, but it still feels good to say it. I think part of the trouble is that there's no preparation for this. If someone walked up to you and asked you to give up a life you considered normal along with 90% of the things you enjoy, for any reason, you'd be given time to psyche yourself and get used to the idea and be emotionally ready. That's how life should work. When someone signs up for boot camp and gives up home and comfort, they take time to ready themselves.
Head trauma doesn't give you that. One moment, one second, you have all that feels good and right and normal and then you trip or something comes at you out of nowhere and all those things you had are taken away. So don't be hard on yourself for feeling like an emotional wreck at times. And yes there are those who suffer worse injuries or illnesses than you or I. Yes in some ways we are lucky. But your fight is real too. Remember that just figuring out how to function from day to day, especially on a bad day, is an act of great strength and bravery. Be proud of yourself for that.
So this is what I've learned- you will have good days. Be thankful for them. You will have bad days. Accept them. (Really.) Be gentle with yourself. Forgive your body for struggling. It's a long hard road, and your body is doing the best it can in its own time. On bad days, or even bad weeks, find ways of making yourself comfortable and work toward being at peace with those times.
I don't have the magic date for when you or I will be done with this. But I hang on to the dream with all my heart that no matter how long it takes, I will be finished with this. It may take years- one to two, maybe a little bit more even. But in a way that freed me from fearing it, because "years" is totally different from "never."
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Old 07-11-2012, 05:02 PM #9
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I have no local support from family and no one to talk to that understands what I'm going through except on here. You guys have been a support life saver to me. Believe me I know what you are going through. I had never even heard of PCS until this happened to me (slipped on ice and fell backward with my head taking the full impact). I am ever so grateful that I found this forum.

It seems one of the positive things that comes out of having PCS is the overwhelming desire to support others in the same situation. Hang in there Michaelabella we are all right there with you!!
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Old 07-12-2012, 10:23 AM #10
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You certainly aren’t bothering us, that why we are here.

You mentioned the family support and excellent medical care, which is critical. Continue to rely on them and continue to let them know how you are feeling.

What you are feeling is perfectly normal. Before my accident I never spent one night in a hospital; when I had my accident I was in hospital for two months. The experience of recovery has given me new appreciation for family and others that continue to support me. I have developed an enhanced sense of gratitude. You mention you already have those good days, celebrate those. On bad days think of those good days, and that overall you will continue to get better.

There is a book out “What Doesn't Kill Us: The New Psychology of Posttraumatic Growth” by Stephen Joseph PhD that I found helpful.
Best to you in your recovery journey.

__________________
What Happened: On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was a severe traumatic brain injury and multiple fractures (skull, pelvis, ribs). Total hospital stay was two months, one in ICU followed by an additional month in neuro-rehab. Upon hospital discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

Today: Neuropsychological examination five months post-accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident. I am grateful to be alive and am looking forward to enjoying the rest of my life.
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