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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS). |
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#1 | |||
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I know it's only temporary but I feel I've gone backwards by about a month and I'm so frustrated and just want to vent, although I'll take any advice also!
On Friday I went for my first, doctor ordered, yoga class. I woke up already feeling out of sorts. Lets start using numbers here... if 0 is my normal "baseline" of how I feel after resting and behaving, I woke up feeling about a 2 over it. I thought that "gentle yoga for mature folks" would be good for me and might help me feel better. I also want to follow all of the doctors orders and give it my all to get better. So I had my son take me. It was one hour of meditating and stretching. VERY gentle and no actual Yoga really at all. I thought it was perfect for a start. When it was over I had to call a taxi to take me the 5 minutes home and almost got hit by a car crossing the street to the taxi. I was very confused and did not look before crossing the street. I got home and was still very confused. The rest of the day went downhill from there with confusion, fatigue, dizziness, blurred vision all being worse. By the end of the day I was about an 8 over baseline. I went to bed hoping it would get better, it didn't, I had to push myself all through the next day. The day after that was a really bad headache day and I felt even worse. Headaches have not been a problem with me lately so this was not good. Then on Monday, still not recovered from the yoga (about a 4 over baseline), I had a two hour assessment with a "Health Management Consultant" from my long term insurance company. They wanted to discuss return to work. This was VERY tiring. Questions were about what I am doing now with my days, what my job consists of, what my symptoms are and how they impact work and then of course the "trick" questions... am I really off taking care of a sick parent, child, looking for other work on the side, doing drugs, socializing all the time, etc. By the time she left I was stumbling and so confused. In about two weeks I will know what they think about my returning to work. Trying not to stress about it. I'm nowhere near ready. On Tuesday I had an appointment with my vestibular therapist. She would not do full therapy after taking one look at me and talking to me for a bit. We did about half of what we normally do and she said I need to rest to return to baseline. I have had to cancel my NP appointment for today. I feel like I've gone back about a month in my recovery. I know/hope it won't take a month to get back to where I was but I'm very frustrated. I don't think it's fair for the insurance companies to put us through these tests and appointments and actually make us WORSE and set us back in our recovery. Is there not some kind of patients rights or something!? I know MsRrio and others are going through worse/similar things and I don't understand how it can be allowed. I will be spending the next two days doing nothing but recovering and hope to see my number return to baseline and I hope that I haven't created a new/worse baseline by setting myself back. I am sorry this post is so long, it was too long for me too! I hope you are all having a good day. CC
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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! Last edited by cyclecrash; 03-20-2013 at 11:18 AM. Reason: added some thoughts |
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#2 | ||
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Sounds awful. It is really discouraging sometimes. Especially when we do things to try to get better. I always feel as if it is one step forward and four back. Does that mean we move forward eventually???!
It has been 18 months for me and I still get those periods. To make it worse, my kids said in the car this morning that they can't remember whT I was like before the brain injury. Breaks your heart (mine at least). The impact on the famiy is awful. Getting better is so important...so do what you feel you can and not any more! Hang in there.
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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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"Thanks for this!" says: | Brain patch (03-21-2013), cyclecrash (03-20-2013) |
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#3 | ||
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I did a similar thing with my eyes. I was getting better and doing well and then I spent too much time on the computer and whamo! My eyes are as light sensitive as they were 5 months ago. It's been a few weeks and I have seen improvement, but it's frustrating. I have to be careful. When I used to have similar symptoms as you have, I used to set myself back for about a week when I would overdo it. I hope it's the same for you!
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"Thanks for this!" says: | cyclecrash (03-20-2013) |
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I know what you mean Mokey, the impact on family is very awful! This seems to bring out all your worst qualities and takes away all your good ones. I was moody before the concussion, I'm WAY worse since! I used to be energetic, hardworking, self motivated, intelligent but none of those things can describe me now. Sometimes I feel my family forgets also that I wasn't like this before.
DFayesMom, I hope your eyes continue to get better quickly! thanks also for the warning. My light sensitivity has been greatly improved, although not at all gone, and I should get off this computer before I bring it back! Thanks for the understanding and support. CC
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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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"Thanks for this!" says: | Brain patch (03-21-2013), Mokey (03-20-2013) |
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#5 | |||
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Oh my, I feel for you, big time.
I really don't know if there is such a thing as patients rights. I mean, I'm sure there's some concept of it out there but I find in Canada we're just so darned cooperative and compliant that we do ourselves harm sometimes, in the trust we extend to professionals. I'm guilty of that. I answered so many questions on paper from the NP that I was almost delirious with fatigue. There was no prize at the end, just interpretation of data that ended up harming my health because it upset me and will bias any further care for me. Everyone who sees it, can never un-see it. Likewise, it appears you overdid it and you can't undo it. It might have worked in your favour though with the insurance interview because you were likely showing symptoms that may have otherwise been in check. So there's that. And there's rest. And forgiving yourself for not being able to see the future. It's not your fault, you were trying something with a good attitude. It's admirable, even if it didn't turn out how you expected. Big hugs to you.
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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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"Thanks for this!" says: | Brain patch (03-21-2013), cyclecrash (03-20-2013) |
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#6 | |||
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C.C,
Sorry you are going through this. Hope today is better for you. I don't think patients rights exist. You do have the right to refuse medical care but I think that is it. Wish it were different. Always thought it was myself until I have had to learn the hard way. Good job for trying something new. I thought that was a good choice too. I am sad that you were not able to do it. I am pulling for you. I stick to just meditation at home and I try to get out for a few hours a week. Other than that, for me, I just have not healed to the point of any sort of normal functioning. I hope you others do. I have had maximum blows to the head with 8 concussions. I have to learn to "live" with this disability and chronic pain. I hope some of you can pull off a recovery to mostly normal functioning. Brain ![]()
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Brain patch. . Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg. Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.) |
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#7 | |||
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I'm feeling a little bit better, with doing absolutely nothing, but I have not returned yet to how I felt before the yoga and appt. I did not sleep well last night and think that may have something to do with it.
I am hoping to try the yoga again at the end of next week. My first two or three vestibular rehab sessions were hell too and made me worse for a few days but then they got better and I've noticed much improvement with headaches and dizziness since starting them so its worth it. I'm hoping the yoga will be the same and get better with continued tries. I admit I'll be worried about setting myself back but feel I have to try pushing on for a few more sessions at least. I'm hoping to get some sleep tonight and a better day tomorrow. Wishing you all a good day. CC
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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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"Thanks for this!" says: | Brain patch (03-21-2013) |
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