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


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Old 08-03-2014, 03:41 AM #1
willgardner willgardner is offline
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Trig How do you get through your darkest days?

Hello, since our last chat didn't go as planned. I decided to start a thread on the topic, because I would really like to know how everyone else does it. Some days, it is nothing short of a miracle that I got through the day...
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Old 08-03-2014, 10:51 AM #2
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The chat w/ joe in LA worked out well for me since having more than a person or two in chat mode is too much stimulation. so if anyone ever wants a short (15-20 min 1:1 chat), let me know.

how i got through my most recent dark days: i couldn't look on the bright side or reason with myself. the dark feelings are just too strong. so i just told myself that the world needs me, or at least wants me around, and all i needed to do that day was breath.
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Old 08-03-2014, 11:34 AM #3
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Quote:
Originally Posted by underwater View Post
The chat w/ joe in LA worked out well for me since having more than a person or two in chat mode is too much stimulation. so if anyone ever wants a short (15-20 min 1:1 chat), let me know.

how i got through my most recent dark days: i couldn't look on the bright side or reason with myself. the dark feelings are just too strong. so i just told myself that the world needs me, or at least wants me around, and all i needed to do that day was breath.
if you ever get too down, feel free to friend me and I'm always up for a chat stuck in the house way too much with headaches so unfortunately I'm here
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Old 08-03-2014, 12:08 PM #4
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My darkest days... they are many. But I hesitate to post what gets me through them because it sounds, trite. But know that it comes from a place of suffering, like the rest of you. Its been 2.5 years since my injury and I've had very little healing take place.

I've not had a single day, a single moment yet without excruciating head pain in those 2.5 years. Nothing touches the pain, no combination of ibuprofen or tylenol and I'm allergic to many narcotics. I've had many intolerable side effects to many drugs tried and many just haven't worked. I tell you this just so you understand that I didn't just have a bump to the head and am all better and am now saying this.

So what gets me through my darkest days... is remembering that nothing is forever. Everything always changes. The old saying "This too shall pass". So when I'm at my worst and sitting in the pit of despair, I try to remember that this isn't forever even though it seems like it. I just have to hang on and something will change.

So for now, I just keep trying to do what I can to get better and balance that with continuing to live my life (because for me, often those things seem mutually exclusive ) and move forward as best as I can, inch by inch even though it seems nearly impossible and honestly sometimes futile. But I only have one life to live and I'm not spending ALL of it sleeping in a dark room! I have things I want to do!!

And I try to find little things that make me happy... my new baby goats, while incredibly demanding and absolutely oblivious and selfish to the fact that I have a brain injury are wonderful and bring me joy, though I do wish they would not scream quite so loudly at feeding time, its brutal to my head!

But when I go out there in the morning and they are so happy to see me and I kneel down and gather them all up and give them hugs and kisses, the screaming doesn't seem quite so bad Until they jump on me and knock me down! LOL!

I know for me, having my dogs, goats and chickens is therapeutic. Knowing I HAVE to get out of bed because they depend on me for food and water etc is important. Knowing their needs come before mine no matter what is motivating to keep the self pity to a minimum. And knowing that my dogs and goats are all good snugglers and none of them mind to have tears on them is reassuring. They don't judge as long as their bellies are full and their needs are met.

Starr
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Old 08-03-2014, 02:15 PM #5
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This thread might be of some help:

http://neurotalk.psychcentral.com/thread164040-3.html

I am 3 1/2 years out and nowhere near recovered, but I have come a long way from where I was at my worst. Looking back, I too do not know how I made it through it. This forum helped, as did knowing that there are people in the world (my family) who need me to stay alive, no matter what. I had also already been through hell with my OCD and CFS prior to the injury, so having made it through that, I suppose I knew that I was resilient enough to survive this too.

I still have very dark days in which I don't know how I have managed to survive for so long. I still have a long way to go, but my symptoms have very gradually gotten more manageable, and I keep discovering additional ways of working around them.

Peace
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Old 08-03-2014, 07:06 PM #6
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Good question.

Hour by hour. Digging deep to find inner strength. Trying to find joy in very small things. The texture of my children's cheeks.

Keep breathing. Minute by minute. Hang on. Remember who you are inside that injured brain. Your essence is there. You will shine again.

Thanks for the great posts,
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What happened: Legs pulled forward by a parent's hockey stick while resting at the side of the rink at a family skate....sent me straight back. I hit the back of my head (with helmet) on the ice, bounced a few times, unconscious for a few minutes. September 11, 2011. Off work since then…I work part-time at home when I can. It has been hell but slowly feeling better (when I am alone☺).

Current symptoms: Vision problems (but 20/20 in each eye alone!) – convergence insufficiency – horizontal and vertical (heterophoria), problems with tracking and saccades, peripheral vision problems, eyes see different colour tints; tinnitus 24/7 both ears; hyperacusis (noise filter gone!), labyrinthian (inner ear) concussion, vestibular dysfunction (dizzy, bedspins, need to look down when walking); partial loss of sense of smell; electric shocks through head when doing too much; headaches; emotional lability; memory blanks; difficulty concentrating. I still can’t go into busy, noisy places. Fatigue. Executive functioning was affected – multi-tasking, planning, motivation. Slight aphasia. Shooting pain up neck and limited mobility at neck. Otherwise lucky!

Current treatments: Vestibular therapy, Vision therapy, amantadine (100 mg a day), acupuncture and physiotherapy for neck, slow return to exercise, magnesium, resveratrol, omega 3 fish oils, vitamins D, B and multi. Optimism and perserverance.
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Old 08-03-2014, 08:30 PM #7
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how do I get through my darkestdays? Well I can barely make it to the bathroom anymore because I am so dizzy. The pain and burning in my head spine and arms is almost constant. I have no bank account and don't see how I would survive financially in the coming years.

I am 170 pounds overweight with palpitations and the pain doesn't help my heart. I am 46. I compulsively check the stock market everyday and have watched it double and triple over the past 5 years and I figure out on the computer how much my 401k would have been worth if I didn't have to empty it out. It is an insane thing to do but my obsessive compulsiveness is off the charts.

I used to deal with my darkest days by once taking 60 xanax and another time trying to hang myself but I was too heavy and ripped the vent out of the ceiling. I hurt my neck badly in that case and both times it was mandatory i was sent to the psychiatric ward.

sometimes I daydream and make believe I am laying down in bed with the wife and child I would have had if I did not get myself sick at 37. sometimes I make believe I'm playing ball with the Son I don't have.

sometimes I imagine my child playing with the children of my childhood friends who have none of them called me in years since I got sick and who I thought I would grow old with. I occasionally think about the many friends at my job who I lost.and I think somtimes about the job that I enjoyed and thought I would retire at. I get through my darkest days by knowing that I probably only have another year or two left in this condition with so many pounds and cholesterol and triglycerides that are off the charts..but it.doesn't bother me nearly as much as you think.

Life is a game of cards and I played my hand. It's as simple as that. I don't have children which seems to be the driving force for a lot of people on here nor do I have the fight of a 20 year old and the hope that goes along with it.

I do not have Mark in Idahos stoic resolve. my nieces and nephews think I am a bum and the rest of my family thinks I have severe mental illness or a drug addiction. how could an unseen head injury cause so much damage and loss they ask? I even have moderators and experts from this website question how the pills I took and alcohol I drank with it could cause so much damage. I tell them to take the same medication in the same dose and drink the same amount of liquor I did and see what happens. Arrogance combined with ignorance is a dangerous combination sometimes.

It is what it is. There are six billion people on the planet. One more life give or take isn't going to change anything. I am NOT looking for sympathetic responses or pity.

I took incredible chances with very dangerous medication out of self pity so this is no fluke what happened.

also the chances that a treatment will come out that will alter or fix perhaps tens of millions of damaged neurons in such a way that different parts of the brain will work together in sync again is practically nonexistent so after 7 years what I am is what I am going to be.

don't read any more into what I wrote than what is here .Someone asked a question and I answered it

Perhaps mark in Idaho is right. This board is best left for questions about physical ailments occurring from concussions on multiple concussions. Perhaps a spirituality room could be formed in the tbi area so the 2 wouldn't mix so much.

oh and I forgot sometimes I get to do the word puzzle when hockey or mark in Idaho does it and I try my hardest to leave a big word at the end of the sentence and hope they do the same as it gives me pleasure.

Last edited by anon1028; 08-03-2014 at 09:37 PM.
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Old 08-03-2014, 09:49 PM #8
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MarkN,

Why do you say I have stoic resolve ?

I never said this forum should be reserved for questions about physical issues. I know there are far more than just physical symptoms that we struggle with.

Regarding the word game, I do not have the cognitive energy to take on the long words. My word finding ability is very poor. Has been for over a decade.
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Old 08-03-2014, 09:53 PM #9
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I am sorry for putting words in your mouth mark in Idaho. I said you have stoicsm because you just seem to deal with your multiple issue in such an incredibly strong way and that I admire very much and am trying to figure out how to achieve.as far as the word game I keep forgetting that cognitive abilities have been affected in a lot of people and I am sorry for that. I do enjoy that game though very much. I don't know why lol
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Old 08-03-2014, 10:04 PM #10
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I have learned that complaining does not help. The computer does not transmit my struggles unless I post up about them. I know the limits of doctors and meds. I know that we are the most influential to our own recovery. Professionals can treat us with therapies but unless we do our part, those therapies will not be as effective as they can be.

The biggest challenge we face is accepting our current condition. When you have dug yourself into a hole, the first thing to do is Stop Digging. Living with unbridled anxiety is like continuing to dig the hole.

We need to measure our recovery discipline day to day or even hour to hour. We measure our recovery week to week or month to month.

Some of our symptoms and struggles will be prolonged or even permanent. But we can do many things to manage and moderate those symptoms.
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