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

~What Do You Think~For Me to Give to Survivors

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Unread 01-29-2013, 05:39 PM   #1
MiaVita2012
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Thumbs up ~What Do You Think~For Me to Give to Survivors

Ok well I don't know if it is impulse or if it is real...I am 90% it is real feeling...Check it out and please take time to give feedback.

I had left the eye doctor today with my notebook with a huge reminder of why I was going besides the follow up....my pupils are not equal and have not been since accident....Why this was not caught from getting checked out at hospital I don't know....That is a whole different story...back to point I get to see opthamologist the end of this week....lol

Any who I'm driving home on back quiet roads that I learned to stick to for anxiety reasons...and I call to check on my family and tell them I am coming back from apt....Just then I had replayed the last week of events and findings in my health(I know I do not suppose to look back)but it was more mental notes of changes to send to my MD's...I have something that I want to do when I get threw rehabilitation....I want to start a non profit organization locally for TBI survivors....I feel that my story is unique like all head injuries and at same time encouraging to survivors and families....What do my other survivors think?
I also live in a military city~I know the military vet's amongst everyone else that suffers from this life changing traumatic event would probably appreciate it greatly....I know I would of...Thank the Higher Power I had this support group and even better at a international aspect ))))

I googled immediately when I got in door....Support for TBI in the metro and ~1~came up for my area?!?!
__________________
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~*~

Last edited by MiaVita2012; 01-29-2013 at 06:02 PM.
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Unread 01-31-2013, 08:35 AM   #2
SmilinEyesMs305
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Yes!!! That sounds wonderful!!! I live in a big city as well, and there really isn't one close to me. It really far north of the city.
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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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Unread 01-31-2013, 02:08 PM   #3
Mark in Idaho
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Brain injury support groups are fabulous. Finding an entity to sponsor one is important. Getting a meeting place and funds for mailing announcements/meeting dates is needed. www.BIA.org has lists of support groups. Rehabilitation hospitals sometimes have groups or may be willing to support a group.

Our group has two sub-groups. After a presentation from someone in the rehab industry, we split into caregivers/family with a moderator and injured with a moderator. The moderators are social workers/case managers/ or various therapists.

I wish you the best at finding the support you need to start a local group. It does not need to be a complex non-profit. It can just be a not-for-profit association or LLC.

Our group is sponsored by a rehab doctor who donates his "court legal expert" fees to our group.
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Mark in Idaho
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59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 01-31-2013, 03:10 PM   #4
MiaVita2012
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Thanks for the support *Smile and Mark....I also have a retired NFL player that I am going to reach out to that my friend knows....When I get further along in my full diagnosis because every specialty MD I go to I get more issues...I will start doing my work
__________________
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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