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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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During the time I have been on the forum, it has been becoming more and more apparent that the treatment options seem to be wider in the US & Canada than here in the UK.
This isn't a gripe but over here we seem to be told take paracetamol and virtually go sit in a darkened room until your better. Whilst over there you guys seem to be offered a lot of mainstream medication and offers to go trials for potential new ones. Apart from the usual doctorly advice - don't smoke, drink, avoid recreational drugs, loose weight etc. We don't get any complimentary advice - take vitamins, drink plenty fluid avoid certain foods which seems to be completely different to what is available in the US / Canada. One thing that seems to be universal is the variation in the capability / knowledge of Neurologists / Neuropsychologists - they either seem to be useless or very good, with nothing much in between. Any views ? PS. Thanks for this site and the posters whom contribute their time and knowledge as us folks in the old world would be in the dark ![]()
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January 2012 tripped over a power cable and life has changed - memory, mood, balance and puzzled. Now how do I fix it ? |
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#2 | |||
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Only after 'toughing it out' largely on my own for 3+ yrs, I did seek out a new-to-me physician. I did patiently play the 'good patient', yet each & every month for 5 monthly visits, I had to make my point very clear each time: "Cognitive dysfunction, cognitive executive dysfunction, cognitive deficits. Of course I'm depressed. Who wouldn't be?? That's not the central issue here." It's tough. Finally, in month 5 visit, I was offered low-dose adderall. (Wasn't tolerable to me.) In month 6, I was offered Aricept (donzepil) --- and that combined with my friend's suggestion for intensive insight meditation training, well --- I've certainly begun to see some light and making some 'headway' through my own muck, as it were! We're all here figuring this all out together! ![]() Much appreciation, Theta ![]()
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_____________________________ . 50s Babyboomer; 2008 high-impact rear-ended/totalled-MVC, closed-head injury->pcs ... "Still dealing with it." 1993, Fell on black ice; first closed-head injury; life-altering. // 2014 Now dealing with Peripheral Neuropathy, tremors, shakiness, vestibular disorder, akithesia, anhedonia, yada yada, likely thanks to rx meds // 2014: uprooted to the cold wet gray NW coast, trying to find a way back home ... where it's blue sky and warm! . __________________________________________________ _________ Each and every day I am better and better. I affirm and give thanks that it is so. // 2014-This was still true for me last year, I truly felt this a year ago. Unfortunately it holds no meaning for me now. Odd, it was the Theta mantra for years. Change change change. |
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"Thanks for this!" says: | Mokey (02-28-2013) |
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#3 | |||
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I'm not sure doctors in the UK believe and/or prescribe complementary treatments.
Since my diagnosis of TBI back in May, my subsequent NHS experience has mostly been: Me: My head hurts GP: Could be depression Me: I feel dizzy GP: Could be depression Me: I feel sick GP: Could be depression Me: My vision is blurred GP: Could be depression Me: My ears are ringing. Is that depression, too? Etc. I actually find it quite offensive. The neuro I was seeing recommended I be presrcibed a medication - something beginning with N - but nothing ever came of it. I had forgotten than until somebody mentioned emergency medications in another thread. The only treatment I've actually had so far is phsyiotherapy which my solicitor arranged for me. If it weren't for the fact I have legal help, I'm pretty sure I'd have slipped through the net completely. For such a common thing you'd think there'd be more awareness of it, if nothing else. Sometimes I think GPs look more confused than I am. |
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#4 | ||
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Much the same experience as I had. Because I had my accident 8 days after my birthday the first GP asked each time I saw him was it related to it.
I once had a GP about 20 years who would did offer complimentary medicine. However, she became "borne again" almost overnight and then called acupuncture and homoeopathy "witchcraft" so we thought it best to change doctors at that point.
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January 2012 tripped over a power cable and life has changed - memory, mood, balance and puzzled. Now how do I fix it ? |
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Makes sense, I did suspect it might be quite a bit to do with the obvious between our NHS and the US healthcare system.
Personally I don't believe in homoeopathy or alternative medicine so it would all be wasted on me anyway. I just wish I had a clear and concise opinion with clear and concise instructions. Even if it is just 'quiet rest'. |
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"Thanks for this!" says: | Theta Z (10-18-2012) |
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So at the moment we are both stumbling around in the dark
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January 2012 tripped over a power cable and life has changed - memory, mood, balance and puzzled. Now how do I fix it ? |
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#7 | |||
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I don't think they really know, though. I bet you could count on one hand the amount of neuros in the UK who know what they're talking about when it comes to mTBI.
I'm not sure the 'experts' even know, to be honest. They 'acknowledge'. We really don't know all that much about the subtleties of the human brain. Which is why I really couldn't care less anymore if they try to fob it off as something else. I know I didn't feel like this before the accident and I know I'm not depressed. That's enough for me to know what's best for me, as far as I'm concerned. Luckily the best known treatment available is rest - something that I can prescribe myself. |
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"Thanks for this!" says: | anon22217 (05-23-2013) |
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Must have been that 90s cynicism kicking in.
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#9 | ||
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I think we have all had doctors like that. My first four months were spent with someone like that...a sports doctor who kept telling me I would wake up one day and it would be 100%!
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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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#10 | ||
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Legendary
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Actually, very few neuro'' understand anything about concussion besides rest. The best recommend quiet rest but that is few. The biggest difference is the critical mass provided by the Sports Legacy Institute, an organization founded by ex-NFL players. The professional football players association has sued the National Football League for poor information and lack of care for those injured by concussions.
This has caused a groundswell of research and information since 2007 that really started late 1990's. Our system of healthcare, as it has become a runaway financial freight train, has allowed those with extensive employer fund health care an inordinate amount of diagnostics and treatments whether they are valid or not. This allows the doctors to try many therapies. A great number of therapies are beyond medical justification but are offered because the health insurance company will pay the bills. The 'off label' use of medications are not strictly regulated so there is a 'try this and see if it helps' method of medication use. The need to maximize profits by the health care provider allows for excesses in care. Of all of the treatments mentioned, quiet rest is still the gold standard. Our military and Veterans Administration have been researching concussion/mTBI to extreme levels but do not provide a similar level of access to treatment because they have budget constraints. We still struggle with consistency of diagnostics and treatment due to decades of liability insurance companies fighting against court recognition of prolonged concussion symptoms. The military and VA have recently let a contract for the NeuroTrauma Foundation to create a diagnostic definition of concussion. So, you can see that we are still in the early stages of normalization of information.
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Mark in Idaho "Be still and know that I am God" Psalm 46:10 |
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"Thanks for this!" says: | andromeda (10-18-2012) |
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