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
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CowboysKat CowboysKat is offline
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Join Date: Dec 2016
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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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Old 11-15-2017, 05:14 PM #2
Mark in Idaho Mark in Idaho is offline
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Mark in Idaho Mark in Idaho is offline
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CowboysKat,

Welcome back.

You should add B-12 and the other Bs to your regimen. A good dose of curcumin extract a couple times a day would be worthwhile to see if it reduces your inflammation.

Finding a position that does not strain your neck is a challenge. It takes effort to learn to sleep without support lifting the head. I roll the sides of my pillow up so it supports my head from moving to the side.

It takes good discipline to get each chiro treatment to last. Icing after an adjustment can help. Find a good chiro out of 3 is amazing. I have found maybe 1 in 6 is any good. Most are too mechanical in their treatment.

The word finding without memory problems is not a big deal. I would trade my memory problems for more word finding problems any day. Pushing too hard to find a word usually just makes it worse. There are a variety of word fining problems. Considering the severity of brain injuries you have had, you should be grateful these are your only problems. I and many of my mTBI friends are much worse from less severe injuries.

Other than your pain, the rest of your problems can be managed. Try to learn to accept them and find ways to minimize the impact they have on your life. Understanding the word finding so you do not feel like a failure each time will be important. The frustration of trying to find the simple words can be a struggle. I have lived with that for 17 years. There is a part of the brain that is damaged. It may never recover. A speech therapist may be able to help you with some strategies. Sometimes, I can look around the room and as I see different images, my brain unlocks and the word pops up.

I hope you have put your riding helmet away. It sounds like riding has been a big part of your injuries. Ouch.

Dimming computer screens can help. F-lux.com can help if the computer does not have a dimming function on the key board. Tinted glasses can help. Getting a full assessment by a behavioral optometrist can be helpful. Check https://nora.cc/healthcare-locator.html

You should feel fortunate that you can pursue college. I had to drop out. I did not have any help or understand my struggles. I just knew my brain was messing up. I finished high school with honors despite having one bad year due to a head injury. I mostly recovered from that bad year but my cognitive struggles came roaring back in college.

Take college slow if you have to. Ask the Disabilities Office if they can help you. Lecture notes or recordings, more time for exams, and other accommodations can make a difference.
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Old 11-22-2017, 06:51 PM #3
Nate Tescor Nate Tescor is offline
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Nate Tescor Nate Tescor is offline
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Hi Cowboys Kat,

I'm really sorry to hear about your accidents,

- I too have had quite a lot of trouble finding the right sleeping arrangements, lately I have been trying to sleep with no pillow, as I find it to help me stay asleep on my back for most of the night (usually I end up on my side and that causes my neck to stiffen up)
- In terms of word finding, yes! Every day there is moments when I have a conversation, and a word will just get stuck, I believe that it occurs to me when my mouth starts talking faster than my brain can keep up with, as I usually am out of breath and it seems as my brains processing power gets maxed out for just a second or two. The fact that your memory is working well is a great sign, as it shows that the capacity is still there but sometimes your brain just needs to slow down a little.
- Earlier this month I did a lot of research into the Vitamin and Supplements sticky's and would be happy to share with you the list I put together, I believe it has helped me a lot.
- Definitely download F.lux for your computers and phones, I don't know if you have done much research but there is theories about the blue light that our screens emit, and about the strain they cause on our eyes. Whether much of this is true I have found it a lot easier to use screens with the blue light filters turned on, and the Neruo-Chiropractor I was seeing gave me a pair of glasses with a red filter which is essentially the same thing and has helped also. I have looked into company's such as Gunnar optiks who make gaming glasses to filter out blue light, and hopefully will be able to try them out soon.
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Old 11-22-2017, 07:32 PM #4
Mark in Idaho Mark in Idaho is offline
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Nate, What changes or improvements do you have to the Vitamin regimen?
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Old 11-22-2017, 10:40 PM #5
Nate Tescor Nate Tescor is offline
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Nate Tescor Nate Tescor is offline
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Hi Mark,

Not so much changes, but the list I put together after reading the vitamin sticky and discussing with you. Have been taking for the past couple of weeks now:

Fish Oil:
2x3 1000mg

Curcumin: 600mg
Citrus bioflavonoids: 500 mg
Vitamin C: 500mg
Vitamin D: 3000iu
Vitamin E: 500mg
B12: 1000mcg

Mega B:
Vitamin B1 (Thiamine Nitrate) 50mg
Vitamin B2 (Riboflavine) 25mg
Vitamin B3 (Nicotinamide) 50mg
Vitamin B5 (Calcium Pantothenate) 50mg
Vitamin B6 (Pyridoxine Hydrochloride) 50mg
Vitamin B12 (Cyanocobalamin) 50mcg
Vitamin C (Ascorbic Acid) 100mg
Biotin 50mcg
Folic Acid 200mcg
Inositol 50mcg
Choline Bitartrate 50mcg
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