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


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Old 11-15-2017, 04:14 PM #1
CowboysKat CowboysKat is offline
Newly Joined
 
Join Date: Dec 2016
Posts: 3
5 yr Member
CowboysKat CowboysKat is offline
Newly Joined
 
Join Date: Dec 2016
Posts: 3
5 yr Member
Heart Looking for Insight and Guidance

Hello again everyone,

I've only posted here once, and I was overwhelmed with the knowledgeable love and support I received.

Not to recount my entire life story, but some information about me that might be helpful:

Diagnoses:
  • Traumatic Brain Injury
  • Four Skull Fractures
  • Post Concussion Syndrome (over 15 mild-severe head traumas)
  • Clinical Depression
  • Clinical Anxiety
  • Post Traumatic Stress Disorder
  • Chronic Daily Migraines
  • Chronic Daily Headahces
  • Ruptured Ear Drum (30% conductive hearing loss in right ear, on side of most severe trauma and skull fractures)
  • Pain Amplification Syndrome

Symptoms:
  • Vertigo
  • Dizzy Spells
  • Naseau
  • Daily Headaches
  • Weekly Migraines of varying severity, type, and location
  • Chronic (all over) pain
  • Neck pain
  • Insomnia
  • Anxiety/Depression (symptom and diagnosis)
  • Mood swings
  • Phantom Pains (in head when PTSD is triggered)

Brief History:
  • Overactive Nerves as infant, would wake up with whole body shaking
  • Hit head as 1st grader hanging upside-down from monkey-bars, hit head, went unconscious, deemed fine by doctors
  • Had first occular migraine three days later, lost vision for hours, vommitting, etc. By the time I was seen in emergency room 5 hours later, deemed fine
  • Gotta love hospitals, am I right?
  • Ever since, have had chronic daily headaches and chronic weekly migraines
  • Had many low-level head traumas throughout chhildhood, deemed fine everytime by doctors
  • Two years ago, horse refused a jump, went overboard, took the fall rolling on my shoulder, rolled probably four or five times, didnt directly hit head, broke wrist, messed up back and neck a bit. Was wearing a helmet, always wore a helmet, even though I got made fun of
  • That summer, migraines worsened and became more frequent. Depression and anxiety severly worsened and I saw a psychiatrist for medication, which helped a lot. Would get migraines and have limbs go numb, which was a new symptom of my migraines.
  • May 1st of last year, had m bad accident, at horse show, horse lost it (probably a brain tumor or something, as diagnosed by the vet) and threw me into a heavy, industrial steel rail head first at a full, frantic gallop. Hit rail one right side of head, helmet served its purpose. Best $300 I ever spent. Was found by a nurse enjoying the horse show on the ground, five feet from the steel rail inside the arena unconscious, bleeding from my ear, with no pulse or respiration, in the fetal position. Ambulance trip to the hospital, stabilized, scanned and x-rayed over and over again, diagnosed with four skull fractures, ruptured ear drum, and never-explained neck injury. Put in neck brace and sent home four days later with the most insane pain meds I've ever had. That stuff KO'd me every time I took it. Trauma Surgeon who saw me said I would be dead if not for the helmet, shocked I was alive, not paralyzed, and had facial nerve function. Said ruptured ear drum was a blessing, as it released the blood and pressure, so no need for brain surgery.

Things we've tried:
  • Been to over 8 neurologists and a neurosurgeon, all of which basically told me as long as my brain wasn't bleeding, they didn't care. Two of which, at children's hospitals, listened for two minutes and wrote anti-seizure medication my parents refused to give me, as I was younger, anorexic, it wasn't approved for children.
  • Essential Oils-helped a bit, may be a placebo, but don't care if I get even the slightest relief
  • Chiropractic's-been through three chiropractors, found a good one. Helped a bit for a while, but everything he does gets undone by the next day, said its a nerve problem, not a bone problem
  • Tried a bit of massage, same as chiropractic's
  • On supplements right now, Omega 3 Fish Oil, Vitamin D3, Multi-Vitamin, and a hair/skin/nail vitamin
  • Am on depression/anxiety meds, with sleep meds if I need them
  • I go to PTSD/Depression/Anxiety Therapy
  • Have tried various migraine meds over the years, all of which made things worse or did nothing (beta-blocker almost killed me due to low blood pressure to begin with)

My most recent adventure has been going to the LA Children's Hospital Pain Management Clinic, it was certainly interesting... Suggested acupuncture, yoga, change in meds, and physical therapy (which has never been suggested before, even though I've been injured a million times).

Some random questions:
  • Anyone else experienced hair loss/thinning after head trauma/intense pain meds? Any way to combat this?
  • Are there any suggestions for pillows/sleeping that alleviate head/neck pain? Sleeping on my normal pillow causes severe neck pain when I wake up and no support.
  • Has anyone else experienced problems with word finding? Not specifically memory, I can remember and recite paragraphs from books, muscle systems, etc. but cant recall simple words like "accept" mid sentence.
  • Any ideas for helping with vertigo? Been checked out by neurologists and ear doctors who all blame the other for the problem with no real solutions.
  • Anyone else deal with my diagnoses? Have any guidance for me? Or recommendations?
  • Especially the pain syndrome, this is new to me and I don't quite understand it...
  • Anyone else with concentration problems after head trauma? Any ideas on how to combat this?
  • Any suggestions on vitamins/diets? I've gone through the search functions and sticky threads, but its all very overwhelming...
  • Any suggestions for sensitivity to computer screens? I'm a college student who cant avoid or limit screen access, so any ideas?
  • Anything else? I'm desperate for advice, outlooks, ideas, and kindness.

Thank you all in advance, sorry if I'm repetitive or put too much or too little information.

Again, thank you in advance.
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