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


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Old 02-19-2014, 08:54 AM #1
RunWriteMomHeal RunWriteMomHeal is offline
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Default My Story - Heading to U of Buffalo

Hi everyone!

I've lurked here since my concussion in November 2013 but haven't posted yet. I admit too much time here is bad for my outlook since I have to work on staying positive and not going into worst case scenario thinking!

But in case this will help anyone, I am heading to University of Buffalo's Concussion Clinic this Monday to see Dr. John Leddy et al. I know there have been a few posts about the exercise treatment over the years, but figured anyone else who may not know about it could benefit. I will report back when I get back.

I'm pretty confident I am the ideal candidate for the protocol because inability to exercise is basically my number one problem. I was extremely active (running, Crossfit, cycling, triathlon, taught Spin, did races, I have two fitness magazine columns and a fitness blog....basically fitness was a major chunk of my life) when I was rear ended in November. Got a bad cervical sprain/whiplash with a few herniated discs and radiculapthy thrown in for fun. It took my a week to even realize I had a concussion (I just knew something was extremely wrong with my brain) and then two weeks to even see a doctor who knew what the hell he was talking about. The first neuro said I didn't have a concussion because I didn't ht my head...

Ended up being treated by a concussion specialist neuropsych, who put me on lots of rest, except I really couldn't rest at all. I have a one year old and a four year old, no family help, no nanny or anything like that and my one year old was sick with bronchiolitis the week of my accident and I was up all night giving him nebulizers, taking him to urgent care, blah blah blah. Basically the weeks after the concussion were the exact opposite of cognitive rest and I think that's why my healing process has been so slow. But I did try to rest and avoid triggers and slowly got better. At six weeks out, I felt pretty much fine so doc said I could try a workout and see what happened. And of course every time I exercised all my symptoms came back which was pretty devastating to me. So i rested again, felt fine again, tried again, rinse repeat. This went on for a while. I rested for three weeks again, felt 100%, ran a mile...boom, back into concussion feeling for a day.

So I found the Buffalo sub symptom protocol and started it off conservatively riding a recumbent bike at 120s heart rate, did that and increased it soooo slowly and was up to 140/150 with NO return of symptoms. Yay! Then I tapped my forehead into a tree two weeks ago and am in a total setback. Not as bad as my original symptoms, but definitely symptomatic at rest again. I'm a writer, and if I write/work for half an hour I get dizzy. I'm slowly feeling better from this setback but it was very frustrating to go backwards for sure.

At this point the concussion doc basically doesn't return my calls since he doesn't know what to tell me (thanks, Doc! ha) and I am flying up to Buffalo on Monday to see Dr. Leddy. I am very optimistic about this treatment since it was helping me before. I am trying not to panic about the tree setback and I refuse to think it was a second concussion (there was just no way it was hard enough at all, it didn't even hurt). I'm trying to think of it like I had a bad scab, and then something rubbed it the wrong way, and it's bleeding again, but it's not like I got a NEW wound. Please no one give me negative prognosis on this setback, I can't handle it

Hope this can help someone out there...I will let you know what I learn at Buffalo.

Take care everyone and I wish healing for ALL of us.
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Lolo82 (07-21-2014)

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Old 02-19-2014, 02:40 PM #2
Mokey Mokey is offline
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Good luck! I was encouraged by their approach when I went. My challenge is finding the energy to get my heart rate up!!

M
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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 02-19-2014, 05:09 PM #3
MomWriterStudent MomWriterStudent is offline
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I'm also a writer, and I find it difficult to work for more than 30 minutes or so. I'm able to write 1 or 2 short articles a day now, though, and I couldn't do that a month or so ago. Writing usually leaves me with a terrible headache, and I feel totally exhausted, but I have bills to pay and mouths to feed.

I hope your visit to the clinic goes well.
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Old 02-19-2014, 07:05 PM #4
RunWriteMomHeal RunWriteMomHeal is offline
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Quote:
Originally Posted by MomWriterStudent View Post
I'm also a writer, and I find it difficult to work for more than 30 minutes or so. I'm able to write 1 or 2 short articles a day now, though, and I couldn't do that a month or so ago. Writing usually leaves me with a terrible headache, and I feel totally exhausted, but I have bills to pay and mouths to feed.

I hope your visit to the clinic goes well.
Thanks! How far into your concussion recovery are you? Before my tree relapse I was fine working as much as I wanted. I only freelance so I don't work that many hours a week (well taking care of my kids is a lot of work too). I was lucky in that I had no assignments for the first six weeks after my accident, it just lucked out that way and I didn't take any on and I'm lucky I was able to do that financially. So you will get there! My new strategy is a little at a time, and I work more in the mornings or after resting. I find it's worse if I try to write after I'm already dizzy or "pressure-y."
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Old 02-22-2014, 01:06 AM #5
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Best of luck to you! I hope it all goes well!
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Old 07-13-2014, 03:54 PM #6
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Hello RunWriteMomHeal,

Can you please update us about the treatment, hope you are feeling better!

Regards,
Pinka
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Old 07-13-2014, 04:22 PM #7
Mark in Idaho Mark in Idaho is offline
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RWMH has not been on NT since 3/25/14
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