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

17 Days left of leave... Not hopeful

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Unread 01-03-2013, 12:15 AM   #11
Mark in Idaho
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Try not to read medical termed symptoms. Use a more simplified term, like, I get dizzy when I try to ...... I struggle to read the computer screen. My husband complains that I am constantly messing up my words. When I try to sleep, I can only get a hour or so before I wake up gasping for breath.

Let them put the diagnostic terms to your descriptions. Let them have the power. If you try to tell them what to think, they will become defensive and discount your comments.

And, don't worry about getting good sleep tonight. Sleep deprivation will work to your benefit.

My best to you.
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Mark in Idaho
.


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 01-03-2013, 08:24 AM   #12
Mokey
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For the longest time, I was told by my GP/ sports doctor that I would wake up one day and I would be 100%. he kept telling me to tell my boss that I would be back shortly. I understand what you are going through. I think these are difficult injuries and quite profound. It takes time to heal, and it also takes time to understand and accpt that it takes time. Good luck.stay off work if you can. I work a bit but alone and on my own schedule. Even then i am not able to do what I did or what I need to do.

100% of the energy I have goes to my kids and other familiy members (spouse, parents).Not easy, but they need me.

Hope it goes well.
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Unread 01-03-2013, 04:49 PM   #13
MsRriO
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Default It didn't go well. RANT!

She began by telling me that all scans were normal and without any evidence of structural damage there was nothing further they can do for me.


I began explaining how I felt physically, still, with little to no change since the injury. I used simple language (that was great advice Mark, you hit the nail on the head there) and she asked, (rhetorically, not expecting an answer) what do you want from me, you're going to have to learn to cope. She suggested maximum two more weeks off work then modified duties at work.


I couldn't help it, I started to really, really cry. It was my first good cry since all this happened to me. I am trying to advocate for myself but with diminished verbal skills its very very hard. Under stress, no words will come. Unfinished thoughts hang in the air and I'm discarded as just emotional.


My screen is swimming as I type this on my iPad because I'm just so utterly sad that there is no help for me.


I was a high functioning marketing manager for a multimillion dollar casino facility with 30 staff directly reporting to me, with poise and excellent presentation skills, and now I can barely express myself to get any results from my doctor. Humbling. Terrifying. Hopeless.


So then she suggested a psychiatrist for my "apparent" depression. She asked, do you want medication? I said, I don't know. (because if you say yes, you're a drug seeker. And why would a doctor ask me that?) She said, well you can ask the psychiatrist for something when you see him. Oh, perfect, more waiting for the insinuation that I'm a worthless waste of someone else's time.


I'm just appalled at the apathy. This is typical Canada. I've got several things working against me. Number one, I'm female. And aren't we always a bunch of whiners. And number two, I'm in a remote area where informed, progressive doctors would never choose to practice medicine so you won't find them, ever. And three, I'm Métis, a visible minority which in this country doesn't bode well for objective or fair treatment.


I am scheduled to see another doctor who is "covering" for her vacation, for reassessment on Jan 18th. I hope to make some sense to her. What part of "agonizing pain, dizziness, nausea, ringing ears, full head, memory problems, can't think straight" don't they understand?


My doctor cooly, disinterestedly replied with, well people have different pain thresholds.


Might as well say, listen cry baby, suck it up and go back to work because you're a total wimp wasting my time. Work just happens to be high stress, sensory overloading, demanding, fast paced and excruciatingly loud... But you'll cope.


I read about other people's therapies on here and their successes and still, because of this so called free medical coverage that we have up in the Great White North, we are left with the level of medical doctors who know how to write a script for amoxicillin in their sleep, and if their mood allows, send you to a specialist in the city if you're dying.


I read on the forums about how others describe their symptoms to a doctor and then something happens. Nothing happens here. Describe it all you want, the answer is not coming.


I've never heard from my doctor: vestibular specialist, ophthalmologist, even physiotherapy was NOT her idea.


So after my doctors appointment I drop the forms off at work, and my human resources officer says, at the sight of my blotchy tear streaked swollen face... "don't worry about work. Maybe you can't do your job anymore and there's something else you could do."


Yes, maybe I'll become a doctor to write amoxicillin prescriptions in my sleep.


I hope she meant it to be supportive. But perhaps that lawyer idea one of you had, isn't so bad. If a fall at work renders me jobless or unable to earn at the rate I'd worked hard for... Would you call a lawyer at this point?


Sorry for the long winded anger....but this was good therapy for me. Thanks for reading.
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About it: October 26, 2012 I fell backward on an icy parking lot at work. I was on Workers Comp for 9 months. My PCS : everyday headaches became once in a while headaches, and neck pain became manageable. Still have occasional mild dizziness, sometimes fullness in the ears, convergence insufficiency, sequencing struggles, short term memory struggles, verbal processing delays. CT neg, MRI neg. Therapies: prism glasses, acupuncture, icing neck, resting, supplementing, Elavil 20mg at bedtime.

NEW: Completed 12 weeks of physical therapy and returned to work full time.

About me: I'm a marketing manager, a mom with a blended family and wife to a heart attack survivor. I believe my brain injury taught me more than it cost me. I'm grateful to still be me!
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Unread 01-03-2013, 06:16 PM   #14
cyclecrash
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Default you have to keep pushing!

I'm sorry you're going through this! I wanted you to know that I understand how frustrating the doctor game is! You can't give up your career after 3 months though.. that just doesn't make sense to me! Parents get a year off but someone that gets injured on the job has to give up their job after three months????

My doctor was saying the same things... oh another week and you should be ready to go back to work... oh another 2 weeks and you'll be fine... but he was saying it nicely. Every time I went back I told him that I was NOT able to go back to work and explained what my symptoms were, what I did in a day, what happened when I tried to do harder things, etc.

I brought my husband the one time after I felt the doctor was not taking me seriously to make sure that I mentioned everything and for him to back up how bad I was. He didn't even have to say anything but the doctor seemed to be more understanding at that appointment. Can you have someone go with you to help you get your point across?

Also, my doctor did not refer me to anybody except a neurologist (appointment was 6 months later!) I found and booked my own appointment with my neuro-psychologist, optometrist (who is referring me to a neuro-Ophthalmologist, appt probably in April or so) and a vestibular physiotherapist.

The neuro psychologist has been the most help (and the most expensive!) and she even wrote a 4 page letter to my doctor explaining what was wrong with me, why, the statistics about it and what my prognosis and recovery plan should be. Very helpful for my disability case. It cost $600 but I feel it was very worth it. Just the relief of not having to constantly defend/explain myself was worth every penny.

None of these people require referrals so try to find someone else that can help you. Is there any other GP you can see? Hopefully the one covering your doctors leave will be more supportive. You have to tell them that you are NOT able to return to work. If you are forced to return to work don't give up your current job. Try for modified duties until you are well enough to get back to your job.

My casino is fabulous about on the job accommodations and modified duties while people are recovering from things. I can't understand you having to give up your job so soon. We have people with permanent modifications or who work half days for years.

Unfortunately your psychiatrist appointment will probably be months away but hopefully I'm wrong. In Ontario at least it's impossible to even get to see a psychiatrist unless you want medications. You have to see a psychologist (at $155 an hour!)

Anyhow, you need to find someone else in the medical field that will help you and see if you can bring someone else in with you to your doctors that can maybe get her to understand. Maybe you can totally rest for two weeks and see some progress. Stress doesn't help any though...

Good Luck.
CC
__________________
I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world.

Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances.

Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident.

The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful!

My brain WANTS to heal itself... I just have to let it and stop trying to get better!
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Unread 01-03-2013, 11:27 PM   #15
Eowyn
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Wow, I am sorry you had such a horrible experience with your doctor. That is awful.

I will have to say, though, that if I had just talked to my primary care provider, that is about the level of care I would have gotten too. She knew nothing about brain injuries whatsoever. Most of what I found out or got as treatment were things I learned about through this forum and other research I did. It is truly disgraceful how ill-informed the medical community is about concussions.

Here is a detailed document from the Ontario Neurotrauma Foundation: http://www.onf.org/documents/Guideli...20Symptoms.pdf

I don't know if you could ask your doctor to read this and say that you would like to discuss it at your next appointment? I had some success with this strategy when I found information I thought my doctor should know but didn't.

Hope you find a way to get some treatment. In the meantime, stay strong.
__________________
mTBI and PCS after sledding accident 1-17-2011

Was experiencing:
Persistent headaches, fatigue, slowed cognitive functions, depression
Symptoms exacerbated by being in a crowd, watching TV, driving, other miscellaneous stress & sensory overload
Sciatica/piriformis syndrome with numbness & loss of reflex


Largely recovered after participating in Nedley Depression Recovery Program March 2012:

.


Eowyn Rides Again: My Journey Back from Concussion

.
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Unread 01-04-2013, 11:22 AM   #16
rmschaver
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Default Lawyer

MsRio you may want to read the tips and suggestion section in the workers comp forum. I also was injured at work and the whole process has been ugly for me. First I need to preface the following opinion. I AM VERY biased about workers comp. IMO it is in YOUR interest to secure legal representation. Just as important learn and understand the legal basics with workers compensation!!!

I do not know about Canada but in the US each state varies with regard to the law. You will also have to consider your employer and any future employment. If you do decide to secure a lawyer do your homework. Find one who has represented clients with mTBI injuries.

Understand that there are several interest in action in your case. One you, two your employer, three the insurance company that has to pay the bills, fourth the government agency overseeing this process, fifth any lawyers involved. Not all these interest will be helpful to you. All to often they are not. One would think that the health and well being of the injured party is primary but the truth is it is not. In work comp there is tremendous pressure to control costs.

This can make for an extended and obstacle rich path to medical care for those injured. Private message me if you want and I will try to help. I do not get online here as much as I used to. I do try to give forward what was so freely given to me.
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49, Male Married, PCS since June 2012, headaches, Back pain, neck pain, attention deficit, concentration deficit, processing speed deficit, verbal memory deficit, PTSD, fatigue, tinutitus, tremors.

To see the divine in the moment.
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MsRriO (01-18-2013)
Unread 01-18-2013, 02:00 AM   #17
MsRriO
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Default Reassessment day

Unlike the last assessment day, I feel more prepared.

I find it so interesting that this tiny (debatably nonexistent according to some schools of thought) physical change in my brain tissue, with just a few little nerve fibres affected, becomes this challenge in every way. I know now, in just 3 months of being in this state, that there's more misinformation and assumption out there than in ANY condition I've ever suffered. Everything I read and hear tells me if you just RELAXED, properly, Miss Rri, you would be cured.

You, Rri, have made all this up in your head, and there is nothing physically wrong with you. Silly old emotional bird. You create your own issues.

I even read many of us, even on here, actually BUYING that, about ourselves. I can't. I know I was fine before the fall. I know I'm not fine now. I have a myriad of crap symptoms. Isn't the easiest conclusion drawn usually the RIGHT one?

I'm not particularly emotional about it. Uh oh, apathy is also a made up symptom. It never ends.

It astounds me. That I'd have to prepare as though going to the Debate Team Championships just to see a doctor who is SUPPOSED to help me. Priceless.

I do hope to get better, of course. I resent their assumption that I don't. What I'd like just once, is to see a doctor who cared to believe that, it is possible, just remotely possible, that when I describe my symptoms, it just MIGHT be true.

I had no idea that falling on a parking lot automatically rendered me a liar. Until now.

Or maybe the accident ignited a very creative condition in my brain where I make up my own misery so that I can build a house in it and live there forever. Lol, it's just insane.

So I'm prepared with simple language symptoms in a list. I feel pain when... I feel dizzy when... I don't talk well when...

But tonight my sarcastic little update was actually spawned from feeling utterly drained and in awe of those of you who've fought this battle to be heard for years. I've only just begun and I'm totally jaded.

To those of you who have sustained patience and hope, my big old liar hat is off to you. You're my heroes.

When you give of your time helping newbies like me, you're angels. When you share your wisdom, you're teachers. When you refuse to blindly accept that expensive treatments actually do anything, you're activists.

Heroes, all of you.

Wish me luck at tomorrow's debate team finals.
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About it: October 26, 2012 I fell backward on an icy parking lot at work. I was on Workers Comp for 9 months. My PCS : everyday headaches became once in a while headaches, and neck pain became manageable. Still have occasional mild dizziness, sometimes fullness in the ears, convergence insufficiency, sequencing struggles, short term memory struggles, verbal processing delays. CT neg, MRI neg. Therapies: prism glasses, acupuncture, icing neck, resting, supplementing, Elavil 20mg at bedtime.

NEW: Completed 12 weeks of physical therapy and returned to work full time.

About me: I'm a marketing manager, a mom with a blended family and wife to a heart attack survivor. I believe my brain injury taught me more than it cost me. I'm grateful to still be me!
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cyclecrash (01-18-2013), musiclover (01-18-2013)
Unread 01-18-2013, 09:39 AM   #18
cyclecrash
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Good luck!! Let us know how it goes.
__________________
I'm a 39 year old, female, accountant. On July 2, 2012 I crashed my bike at the end of a 65KM road ride. I was fine that day but woke up the next morning to my current world.

Ongoing symptoms include: dizziness, blurred vision, light and noise sensitivities, cognitive problems, uncontrollable emotions/depression/anxiety, headaches (but they're getting better), mental and physical fatigue, difficulty communicating and sleep disturbances.

Currently seeing a fabulous Neuro Psychologist and vestibular physiotherapist and hoping to soon see a neuro ophthalmologist. I am currently doing 20 minute stationary bike rides daily, 20 minutes of meditating, 15 minutes of Lumosity and lots of resting. I have not been able to work or drive since the accident.

The things that have helped me the most since the accident are vestibular therapy, gel eye drops (for blurred vision, sensitivity and dryness), amitriptyline (10mg), and meditating. I am finally starting to see some slight improvements and am hopeful!

My brain WANTS to heal itself... I just have to let it and stop trying to get better!
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Unread 01-18-2013, 12:32 PM   #19
musiclover
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Your words really hit home with me...I went through all of those emotions with my first concussion and now find myself dealing with it again. I am so sorry for your pain. I am there with you. I cannot believe I am back in this again. I've had people tell me that if I stopped focusing on it, it would get better. I know from my past experience it just takes what it takes - and that is different for all of us - but it doesn't take having ignorant and uniformed people passing judgment on us!!

Just want you to know you aren't alone. I'm really struggling this week and feel for you
__________________
Musiclover
.


PCS "survivor" - first concussion 10/2010 with PCS for nearly a year. Hit back of head on a shelf. Symptoms were head and neck pain, vertigo, nausea, lethargy, anxiety & depression. Experienced greatest amount of recovery between 9-12 months, with the following year being much, much better
.


2nd concussion 12/2012 - hit front left forehead on wooden edge of couch. Currently dealing with a return of PCS symptoms including headache, nausea, vertigo, brain fog, and lethargy.
.


~ just trying to take it one day at a time
.
~
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Unread 01-18-2013, 12:50 PM   #20
MsRriO
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Default Thanks!

I'm really nervous. Two hours til the appointment.

I hope you guys can "hear" the humour intended in parts of my post, because I really feel no choice but to smile at this journey. I used to write a blog, maybe I should start again.

Not once has my husband been told he is choosing to feel stress, since his heart attack. They take the tissue damage of his heart seriously.

I'm just floored that a brain gets no such medical respect at all.

In 20 years I hope retired doctors say to themselves "omg I wish I'd known, I'd have helped so many people" once there is enough evidence by stronger testing or something, that PCS is not just a fabricated syndrome.
__________________
About it: October 26, 2012 I fell backward on an icy parking lot at work. I was on Workers Comp for 9 months. My PCS : everyday headaches became once in a while headaches, and neck pain became manageable. Still have occasional mild dizziness, sometimes fullness in the ears, convergence insufficiency, sequencing struggles, short term memory struggles, verbal processing delays. CT neg, MRI neg. Therapies: prism glasses, acupuncture, icing neck, resting, supplementing, Elavil 20mg at bedtime.

NEW: Completed 12 weeks of physical therapy and returned to work full time.

About me: I'm a marketing manager, a mom with a blended family and wife to a heart attack survivor. I believe my brain injury taught me more than it cost me. I'm grateful to still be me!
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