TBI & ADHD; why can symptoms of the former not bec... - Headway

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TBI & ADHD; why can symptoms of the former not become identical to those of the latter & then be treated as such...?

Ivanlc profile image
Ivanlc
β€’36 Replies

Hi. I've only recently discovered that adult ADHD exists and now feel I've finally been able to ID my late-onset symptoms after so much struggle & self-blame over the years.

I'm 18 years post TBI and still struggling in ways I shouldn't be after this much time.

However, what I've found impossible to do is get the medical community to acknowledge that in recent years I've developed ADHD-like symptoms *secondary to TBI*. And this is simply because ADHD is "defined" as something that must *always* have roots in childhood (which it does not for me); therefore, it simply can't develop as a result of banging your head very hard.

Once it's known I've had a TBI, when I've tried getting an ADHD diagnosis, it's like any ADHD symptoms are written off as being due to the TBI, meaning any ADHD treatment/medication which might help me with the issues I now have (ie. which AREN'T antidepressants or mood stabilisers) won't be considered, when they could help me with attention deficits, ability to focus/not seek distraction and/or anxiety - and which antidepressants or mood stabilisers havent done.

To my mind this is ridiculous. A TBI is damage to the brain that causes it to function incorrectly. ADHD is also due to damage to the brain, though in most cases it will, at some point, have been developmental from childhood according to its definition.

Exactly *how* the brain malfunctions after a TBI depends entirely on which part(s) were damaged, meaning that it's **ENTIRELY** possible that its symptoms could mimic the MO of ADHD at some point, as in my case.

So why shouldn't ADHD medication also be effective for what I'll call TBI-induced ADHD?

Ok, maybe it's not *such* a common occurrence that it's been worthy of headline news, but I'd have thought that *someone* else out of 7.5bn people on the planet would've, at some point, developed symptoms similar to my own as a result of their TBI and that this would've been the been disseminated to others in the medical community. I can't be the first person in the world to have experienced this and put 2 and 2 together. And I'm no medic or intellectual (more the opposite, I think).

So my question is this; is anyone reading this able to relate? Do get in touch if so; *very* desperate to compare notes...

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Ivanlc
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cuckoosnest2018 profile image
cuckoosnest2018

Hi Ivanlc - I do feel so sorry that "all things mental" are getting you down. Yes ! they are very difficult to cope with, on a day-to-day basis, which turns into year-by-year, with very few, if any, really understanding what you're going through. I don't know much about ADHD, but have suffered with ADD every moment I have lived. It is definitely an inherited thing. I can totally see why family members were the way they were … now.

I suffer from a borderline personality, with that, added to ADD, life just isn't the same for me as the average, well person. I tend to have the same types of symptoms, regardless of an overcoming Christian life. (poorly defined inner self, impulsivity, problems with organization, feeling different from other people, temper problems, (used to have substance abuse problems before becoming a Christian, none for 48 years now) blurting out things inappropriate to conversation, chronic procrastination, and the list goes on. The borderline personality symptoms were very dangerous in my childhood - I was the neighborhood fire-starter, thief, shoplifter, was anti-social and a pathological liar. If it were not for the Lord coming into my life, when I was fairly young, I would be not only the same, but worse !! I do believe all people struggle with something, I really do, but where our soul spends all eternity is the most important and prized thing in a person's life. The Bible says we will have tribulation in this life, and maybe, just maybe, some people (like you and me) couldn't stand the pain of physical pain or other forms of tribulation - I don't know, nobody does. I do encourage you to bring the Lord into your life. You wont become someone else, but you will find the joy and hopefulness knowing the kingdom of heaven waits for you, at the end of your life !! it's all I really live for, there's nothing on this planet of mud I would place all my affections on - nothing. So do yourself the biggest favor ever - please ask Jesus to forgive you of all sins and wash them away in the blood He shed for you - He promises to save you, He can't lie/ die or fail. Your friend, Claudia

Ivanlc profile image
Ivanlcβ€’ in reply tocuckoosnest2018

Hi Claudia. Thanks for your reply, but established/organised religion is something that simply doesn't click with me. At all.

We each believe whatever we need to believe to get us through our lives; be it God, Jehovah, Allah, Jesus, Fate or that a guy with a world-size gameboard & vindictive personality exists to drive individual human beings into madness.

Whatever belief works for one person won't necessarily work for someone else, and this is the case with organised religion and me.

Apologies if i sound harsh or ungrateful Claudia, but rhetoric such as that which you wrote only makes me want to distance myself, because I know how much destruction belief in religion has wrought on humanity over the millennia.

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

Hi Ivanic, who said that you shouldn't still be struggling after 18 years? My accident was in Feb 1998 and I struggle every day. Brain damage is (or can be) for life. A certain amount of repair is possible but most people agree that after 4 or 5 years you plateau. Then you learn to cope with it. Brain damage can exacerbate pre-existing traits. In my case I was very anxious before my accident and it became worse after. Maybe you had a degree of ADHD before and it now seems worse? I tried antidepressants but they dulled my already struggling brain. I am now on Agomelatine/Valdoxan, a different type of medication, and it reduces the anxiety without sedating me. May I suggest avoiding Psychiatrists and instead see Neurologists, Neuro Psychologists. All the best.

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

Hi Phil. It's not that I believe I shouldn't be struggling; it's more that I can't find... a plateau of contentment & self acceptance, I guess.

I'm in a far better position than most people I've known, post TBI; I'm ok financially, and live very comfortably in my own house. Don't even need to work, as the compensation I got has been wisely invested by my financial adviser and the returns are enough to live very comfortably on.

Had my garage extended and have a workshop in there in which in can do woodworking and suchlike to keep myself occupied. Have even sold a few things I've made.

I have done - and can do - a significant number of things in my life; I just don't have the motivation to do so anymore, however, as I'm terminally depressed. It used to be periodic mood swings, which were annoying, but i got used to the cycles and planned stuff accordingly.

But now it's evolved into treatment-resistant, unipolar depression. (Have been on *all manner* of SSRIs, SNRIs & mood stabilisers over the years.)

And no, the ADHD thing pre-accident didn't exist; the ADHD clinics I applied to for treatment established this.

Can I ask what your GCS reading was when you had your accident, Phil? Mine was 3, if I recall correctly, so not dead, but damned severe. Was in a coma for 3 weeks.

I'm not playing Whose Dong Is Biggest here; I'm just saying that despite what I've managed to do given the severity of my TBI, I still can't find fulfilment after nearly 2 decades 'cos I can't get past this persistent depression that robs me of simple pleasures & the ability to do things that I'd otherwise (and used to, post TBI) get satisfaction from...

Oh, and I've never seen a psychiatrist; just (neuro), psychologists & neurologists.

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

Mate, I don't get satisfaction from doing things like I used to. And I have very little motivation. I think of things that I'd like to do, write them on a piece of paper, but then find that they just don't get done. It is infuriating. I do SO want to do stuff, but can't. And that is a symptom of my brain damage. It's like there are many hurdles in the way of me. Maybe I can clear one or two... but then I stumble and fall at the third. I find that I CAN achieve if I am helped by someone. And all they have to do is be there and focus on what I am doing. Weird. But it works. And I struggle so mu h to focus and remein on-task. I get distracted very easily. It drives me nuts. I went thru very dark times.. my marriage failed, I lost all my friends, lost my new home I'd just built, lost my job, had 3 suicide attempts... I had my accident in Australia but now live in the UK. I don't know what a GCS score is. I was unconscious for maybe 10 minutes, had a seizure, but no coma. They released me from hospital as they thought I was fine, just badly bruised. But I wasn't fine. It took 6 years to get a diagnosis. But by then my life had fallen apart. I am now happily remarried and I too live comfortably. We are lucky my friend. But contentment escapes me too. It seems to be a symptom. I am managing to keep the black moods away at the moment, no suicidal ideation for a number of years, but I know that they are lurking in the shadows so I work hard at keeping them at bay. I pace myself and rest whenever my brain says it needs it. And I pick my battles and try not to take on too much. Keep battling Ivanic.

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

My man, I totally get where you're coming from re: the issues you've described; have exactly the same crap going on on, too. The number of tasklists I've made over time which have just vanished into the ether is silly. And as for being easily distracted & having gotten nothing done in the end... Jesus...

You mentioned that your 1st marriage broke down post TBI, but that you're now remarried. That unconditional love & support must have injected new life into you; I've experienced that wonderfully uplifting rush of self-<everything> you get from a relationship post TBI.

I know you can't depend on someone else to fulfil you completely; in the long run, that's a great way to destroy your future self-esteem, but it's a VERY welcome leg up when you're constantly attacking yourself & other stuff ain't working out. I'm just not wired that way, as I suffer from nice guy syndrome & think too much, rather than occasionally being guided by instinct and so miss potential opportunities.

The key thing that's eating me, Phil is the *nature* of my mood swings keeps changing; I think I've got it down pat, then it changes again after X months, and a new pattern emerges. Used to be the low moods would alternate w/ hypomanic, positive moods where is get stuff done. Now, +ve moods last merely hrs or even mins, whereas the depressive swings just go on and on...

What kind of contentment do you think you're looking for Phil? Vocational? Recreational? Domestic? And why d'you think it eludes you?

Meantime, what do you do to "keep the darkness at bay"...?

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

Whereabouts in the UK are you, Phil? I don't know anyone anymore who's as many/more years post TBI as me, and who struggles w/ residual issues similar to my own.

I'd very much like to meet for a chat.

(... 'Course it's now you're gonna tell me you're based in the most northernly tip of the British Isles, when I'm in Milton Keynes...πŸ˜‰ )

ivan.

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

I'm in South Wales Ivan. So still quite a way from Milton Keynes. It would be good to meet for a chat. I go to a local Headway meeting every few weeks, I have for years, it's good to talk to people who totally get where you're coming from. Talking about your mood swings, mine seems to go in cycles. I'm always looking for external factors to explain it but most of it just seems to be me. So when I wake and I just KNOW due to experience that it isn't a good day I go back to bed. My Wife is used to me doing this. Maybe it's once a week or so. I take a Zopiclone and 'turn my head off' for a while. Then I take it easy for a few days, don't take too much on, and let it pass. Before I got married again I spent far too much time in the pub. It removed me from reality. Much the same as antidepressants. But I now try to do stuff such as days out and holidays with my wife. It is still hard and there is always a price to pay for pushing myself. But I reckon they are little victories over the limitations imposed on me. I am a SURVIVOR of brain damage, not a victim. Maybe we can swap phone numbers? I'll read the Privacy tips and see if it's allowed. Or maybe there's some kind of 'Private Message' system on here? Just try not to beat yourself up about not being the person you once were. Easy to say tho Ivan - I'm afraid I find myself 'mourning' for the old me. But this new one ain't so bad. Take care, Phil

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

I use a Traffic Light System with my 'Things To Do' notes. Three pegs - one Red (Urgent), one Amber (Needs doing within weeks) and Green (whenever I have the energy/motivation/concentration etc). It's not perfect but it helps. My little life seems to float on OK for a while, then I get a few things thrown at me at once and I can't cope. It rocks my boat. I have to then focus and decide which is the most urgent (and THAT is a difficult task by itself!) and tackle it. The rest must wait. BUT I am always aware that they are there, lurking, taunting me.. Curse my brain. I often think it would be nice to not be so self aware, high functioning.

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

"I often think it would be nice to not be so self aware, high functioning." - Amen to that, my friend...

I just don't have the willpower to do an "urgency" system anymore as I just don't stick to it. I perhaps used to, but i don't recall now. I just get so easily distracted by *everything* that very little gets done these days.

And since trying to do stuff when depressed/tired results in things going wrong, it's best to leave well enough alone.

This is why I'm so pleased I discovered that adult ADHD exists. Being so many years outside the TBI treatment window, it explained SO much & meant I could stop blaming myself for some traits I hated in myself (poor timekeeping, easily distracted, etc).

Ok, the origins are different, but whether there from childhood or whether a result of TBI, it's still due to a brain that's malfunctioning.

And it's also hard to articulate myself in writing, because although I can write very good English, I spend too much time "crafting" what i want to say so it sounds good, rather than just getting to the point!

Guess I'm trying to hang onto the belief that I'm *projecting* intelligence 'cos I feel it lacking in real substance...

Will get to your other msg later, Phil; got some stuff to prepare for now...

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

I'm on a roll, this is my 3rd message to you this morning. I just remembered that I was going to ask you about fatigue. It is one of my worst problems. I need to sleep for 2 - 2 hours every day. About 4 hours after I wake I can feel my brain start to shut down. Light becomes too bright, noise gets too loud, I get irritable.. I must escape and rest my brain. Infuriating. On days when I MUST keep going I have Modafinil tablets prescribed. They allow me to keep going. But it is not a nice feeling - like being jet-lagged and full of coffee. So I make sure I allow myself to sleep the following day. Do you get that? And I forgot to say also (my stoopid brain!) that for 3 months or so after my accident I was on a manic high, out of control, disinhibited.. maybe that's why people didn't spot that I had damaged my brain? But after that 3 months I cam down to earth with one hellova bang - and my life started to unravel....

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

I'd say "INfatigue" is my problem. My brain just doesn't recognise that it needs sleep. I average about 2-4hrs a night. If that.

When you say you sleep for 2hrs everyday, is that during the day? Or at night? Cos 2hrs a night is not a lot of sleep AT ALL.

According to the sleep app I use, I got 8hrs one day last week. Not sure how that happened, but it did. Unlikely to be repeated anytime soon.

But though I suspect cumulative lack of sleep is the reason I'm so screwed up, when it comes down to making myself go to bed at night, it just doesn't happen. Night after night I tell myself, "tomorrow, I'll go to bed early..."

Nope. Been to a sleep clinic for input; couldn't follow their advice.

So how many hours d'you get a night, then?

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

I get a good 9 hours every night. But my brain starts to shut down 4 hours or so after waking at 7 or 8. Then I HAVE to go for another 1 - 2 hours. Then I feel a bit refreshed, but my best time is the 3 - 4 hours when I wake in the morning. This has been the same since my 'manic phase' ended after my accident. I seem to have a lot of symptoms in common with you but we differ in the sleep department. I have to say that I reckon that all of your symptoms are down to the brain injury. And it is coincidental that they are also symptoms of ADHD. Do you go to a Headway support group to meet people with similar problems? It's well worth it.

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

Wow. 9 hours. Every night. I assume you just get tired at a certain time, and stop functioning...?

I differ in the sleep dept from most people, be it TBI, ADHD or neither.

And I agree that the symptoms are exactly due to the of brain injury (and lack of sleep, obviously). This is why the two ADHD consults I had were invalidated when they saw "TBI" on my notes...

And this is why I'm pissed off. Just because the *cause* is different, why should that make the treatment invalid if the symptoms are the same?

The problem is, as I appear, to all intents and purposes, visibly "fine", and since it's been nearly 20 years, the "I've had a head injury" thing just doesn't cut it anymore.

Yet I'm still struggling and numerous things I've tried over the years to address the issue haven't worked.

So if I'm struggling primarily with the symptoms of ADHD, what harm is there in trying its treatments, if they might ameliorate these symptoms?

I'm worse now, in terms of intellectual ability/cognition than I was, say 2 years ago. Not sure why, but I've noticed definite deficits in recent months. So again, the parameters have shifted just when I thought I finally knew who I was now...

I didn't really get into attending Headway groups in the early days, as other people there were far less functional than I was, so I couldn't connect. At that time, I was desperate to meet peeps who could echo my own experiences, and I never really met anyone at Headway who could. I did attend a brain injury rehab centre near where I live which ran all manner of rehab programs. Attended for several years and just eked out a life around this.

Time then passed, and I slipped back into the "real" world (as opposed to the remedial one).

I'd compare myself to "neurotypicals" (normal people) all the time, and this was, for the most part, fine.

It's only more recently that I've noticed a sudden, dramatic decline in cognitive ability -along with other related characteristics - and this is why the adult ADHD thing struck such a when I came across it a couple of months ago.

The fact that it's just mimicking ADHD means nothing as far as I'm concerned; as I've said before, TBI & ADHD both result in a malfunctioning brain; it's just their causes that differ.

Do you drive Phil...?

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

Yes I drive. I continued to drive after my accident in Australia. But I was all over the road for a while & didn't know why. Anyhow, I moved back to UK a couple of years later, after my life had fallen to pieces, and eventually got the horrific diagnosis in 2004. Then I was told I had to go for a driving assessment in Bristol, which I passed with flying colours. Stuff I used to do before my accident I find I can still do. Kinda. So as long as I'm not tired I'm OK to drive. The interesting thing is that I moved back to Wiltshire, an area I already knew, so I knew my way around. But now I've bought a place in South Wales I cannot learn my new surroundings. I get totally lost. I can't remember which direction I need to go at the end of the street. It is worrying to be in a town somewhere with Tina and think 'I have no idea of the route home.' I too have noticed a decline over the last few years. A bit alarming. I also found that getting together with and then marrying my Wife is exhausting. I got used to living alone in peace and quiet. I tended to lock myself away when I needed rest. Now I' have'to interact with someone every day. So I get much more tired. Can't win ! But I try to rest as much as possible. Gotta dash. Later...

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

... Just so I'm less confused, Phil; did you move to Oz cos your then wife was Australian? And did you say you had the accident in Oz?

I'm assuming the above as in the UK, the hospital would've told the DVLA of your TBI, so you'd have known about having to do the driving reassessment. (Had to do mine twice.)

Oh. Hang on; you weren't in a coma, we're you? Just remembered. So that'd explain why the DVLA wasn't alerted and why you didn't know you had a TBI, right...?

Re: you knowing your way around in Wiltshire but not in Wales; what I learned in the early days of rehab was that stuff you knew prior to the TBI would usually still be there, but new stuff wouldn't go in w/o a fight...??

D'you not use Google maps when walking? It's a frickin' pain in the a$$, but if you manage to get past its annoying idiosyncrasies, it's useful when you dunno where you are when on foot. (In car, I use Waze, which can also be bloody irritating...??)

It's interesting that you find being w/ your wife exhausting, Phil; I've long harboured the misguided belief that if I'd been w/ someone long term, I'd've had an easier time post TBI, as someone would've liked me for me in those moments when I just don't much like myself. Naive, I know, but the grass is forever greener, eh...? πŸ˜‰

So are there times when Tina loses patience w/ you 'cos she doesn't always get/remember how the TBI can affect you?

... Or is more the not having to interact w/ someone when you're just not in the mood or are knackered?

I'm sure she'd be willing to give you the space you sometimes need if you sit her down have a proper talk w/ her about how the TBI has changed you. But I don't know her, so you'd have to make that call...

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

I totally get where you're coming from re the symptoms of ADHD. Obviously nobody is going to treat you for Adult Onset ADHD if they don't believe you've got it tho. BUT you're trying to treat symptoms. I fear that whatever they could give you would sedate you and with that piled on top of the existing cognitive deficits you'd find it really hard to function. Like you, I pass as 'normal'. I don't share my medical stuff with many people. My 'cover story' is that I retired early. I've learnt that people just don't believe me when I tell them that I have brain damage. Until they see my fatigue overwhelm me or watch me trying to achieve something,with my grasshopper mind hopping all over the ruddy place. I go into the kitchen for a paracetamol. I have a drink of water and go and sit down. Bugger, I forgot the pill. So back into the kitchen. I turn the laptop on to check the bank accounts. Ooh, I was gonna take a paracetamol. So I take one and go back into the front room. Bugger, I was going to check something on the laptop, what was it? So back into the kitchen. I stick the kettle on and shout to the Wife 'Do you want a cuppa?'. No reply so I go to find her,forgetting all about the laptop. You've gotta laugh...

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

"Obviously nobody is going to treat you for Adult Onset ADHD if they don't believe you've got it tho. BUT you're trying to treat symptoms. I fear that whatever they could give you would sedate you and with that piled on top of the existing cognitive deficits you'd find it really hard to function" - Yeah, I getcha dude, but i guess I'm just curious (desperate?) to know whether ADHD treatments might have a positive effect, since they'd more for maintaining focus & limiting distractibility (I *assume*; but maybe they *don't* work like this...??)

If it were to be sanctioned by the medics in a "we dont know how it'll affect you" manner, I'd be more than happy to give it a go, I reckon...

... So if you've retired early what's the reason behind i that you give...?

I guess I've been lucky in that I've not been in many situations where my disclosing my TBI has been done as "an excuse", as it usually comes across as a triumph-over-adversity thing by the time I've gone through it...

I did enjoy your "welcome to my world" anecdote, Phil; left me chuckling fondly in that way that you can only legitimately do when you've been there yeself...πŸ˜‰

Hey, so you didn't say how Tina generally views the whole TBI thing; does she get its sometimes tricky (read as: annoying to those on the outside looking in...) subtleties...?

Right. It's after 4am; once again, just got carried away by mood and the mind racing to try and do *everything*...

You are quite right, my friend; you do indeed gotta laugh at times...πŸ™„/🀯

i.

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

Right, I've got to keep scrolling up to answer questions as I can't remember what you asked !!

So I'll fire the laptop up later so that I can read your questions on it and answer them in order. Smart, huh ?!! Catch you later, gotta kip then go to an Xmas thing...

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

"Right, I've got to keep scrolling up to answer questions as I can't remember what you asked !!" - Heh heh heh! Oh, dude; I'm guessing you can fully appreciate the sense of camaraderie you create when you say stuff like this to another bloke who once banged his head too hard, too...!!! πŸ˜‚

Hey, whereabouts in South Wales are you, Phil? (Maybe I already asked you; ain't gonna apologise if so; we both know the score and are scrolling WAY too bloody much already...!! πŸ˜‚)

Found a site called whatshalfway.com (whose purpose I'm sure you can guess...πŸ˜‰) which lists Swindon as a halfway point between MK and <insert city in South Wales here (I put in Cardiff to get an idea of distance)>.

About an hour and a half drive for each of us. Whaddya reckon to meeting up one day for a chat in which we'll *still* each regularly forget what we're talking about, but where at least there'll be fluid to lubricate the larynx...!! πŸ˜‚πŸ˜„

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

I just sent you a Private Message via Healthunlocked. You should get a Notification on 'Chat' up in the top left corner, next to 'Home'.

RockyMountain profile image
RockyMountain

Hey, Ivan, Phil.... Really enjoyed reading your evolving comunication thread. I also sustained a TBI following a mountain bike accident that like yourselves changed my life. I guess reading the thread it occurred that the symptoms, emotions and challenges you face are identical to mine. I always thought people/personalities being unique and different would ensure a TBI would manifest itself in that way. But it seems not, it heartens me to be aware of this.

Take care show courage and stay strong.

Ivanlc profile image
Ivanlcβ€’ in reply toRockyMountain

How long ago did you have your mountain bike accident?

RockyMountain profile image
RockyMountainβ€’ in reply toIvanlc

Hi Ivan, over ten years ago now, still married, not working, my settlement covered loss of career. I'm fifty eight. As active as I can be

sportswise which for me is time on the fells and moors. The fatigue is a problem, earlier today I was going to go for a bash over the moors and then zap.... ended up going for a kip instead.

I share all the TBI issues you guys discuss, diagnosed under the damaged Executive Function Skills umbrella, as well as poor balance, visual perception difficulties such as speed and distance and a conglomerate of other stuff too.

I got knocked off my bike they call it T Boned. Car pulled out as I was travelling down hill at 27mph, up in the air, head first through the windscreen backwards, four head breaks frm back to front eye sockets. One issue for me was speed to zero.

Quite a bit of mechanical damage to limbs also.

But all said and done, it's not what happens to you, but how you deal with it. Though that said, that is the hardest fight.

We my friends are survivors, trying to be the best we can be, some would say warriors.

Take care, stay strong.

SillyPhil profile image
SillyPhilβ€’ in reply toRockyMountain

Too true Rocky Mountain. A lot of us fall by the wayside, lose family, job, home.. end up homeless and/or suicidal. Or dead. I've met a fair few people who are 'high functioning' but still damaged. James Cracknell, Headway's Vice President, like us would come across as fully recovered. How many people do we pass in the street who have brain damage? Life is hard for them/us. We are the same people we were.. but also very different.

I'm amazed I'm still alive. And grateful for it.

Ivanlc profile image
Ivanlcβ€’ in reply toSillyPhil

I count among the "high functioning but still damaged" number.

It's been said a few times that if I'd suffered more damage, I might've struggled less, as I'd likely have had less self-awareness.

I wasn't aware Headway's chair was a TBIer. Is he older or younger and how severe was his injury...?

Talking of people we pass on the street w/ brain damage, I once came across a guy in the town centre who'd fallen. He was severely disabled and was just writhing on the floor. Nobody stopped to help; they saw he was clearly in distress & just walked by, as he had severe speech issues, so couldn't express himself easily. (Like he needed to, visibly struggling lole that.)

Helped him up & took him back to his place. Turned out he'd had a really severe TBI which had left him w/ body-wide palsy. He'd been a normally-functioning guy before his accident.

So though we three are different to how we once were, we're nowhere near as different as we could've been.

... We could also just as easily have ended up on the wrong side of a large plot of grass used that's used for a very specific, and pretty terminal purpose...πŸ˜―πŸ˜‰

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

Yup, I've often wondered if I would be better off either more damaged and therefore maybe not aware of my deficits OR less damaged so that I don't struggle so much with trying to live up to unrealistic expectations of what I feel I should be able to do. But 'Be careful what you wish for.' ! Just got to try to be the best person that we can be...

SillyPhil profile image
SillyPhilβ€’ in reply toIvanlc

James Cracknell is Headway's Vice President. I think he's mid 40's now. Famous rower. One of the 'Oarsome Foursome' and done lots of endurance stuff since. He was hit on the back of the head in 2010 by the wing mirror of a truck whilst cycling across the USA. He's one of us, high functioning but a different person than he was. He did a couple of great programmes with Ben Fogle. We'll worth a watch if you can find them. The part where he almost, almost loses it with a camel is very telling... I have to work really hard to control my temper at times too.

Ivanlc profile image
Ivanlcβ€’ in reply toRockyMountain

Hiya. So whereabouts do you live, and what's your name?

Calling you either "Rocky" or "Mr Mountain" doesn't feel very sincere... ;o)

RockyMountain profile image
RockyMountainβ€’ in reply toIvanlc

Hi Ivan, a live in a village, midway between Manchester and Preston, on the edge of the Lancashire moors, Belmont, Winter Hill on my doorstep and onlyan hour and a half from the Lakes, or North Wales.

Rocky Mountain was the brand of MTB I was riding when I had my TBI. Fortunately it was a team specked import from Canada with all the bells and whistles, anything less and I’d be dead.

Real name Alex.

Take care, stay strong and courageous.

Ivanlc profile image
Ivanlcβ€’ in reply toRockyMountain

Hey Alex. Nice to meet you more officially. πŸ˜‰

I lived in Manchester before my TBI. Live in Milton Keynes now, as my parents are here and the HI (head injury; didn't have to be traumatic) rehab place I was in Aylesbury, which ain't far.

So how did the "bells & whistles" bike prevent you from expiry? A car protecting you, I get, but you still exposed of a bike, no matter how tough it is...

So if you're a half our from North Wales, how far are you from Swindon, which is midway point for Phil & myself and where we're thinking of meeting when he's back off hols...

Exhaust profile image
Exhaust

My daughter is 12 months on from a serious RTA which has left her with a severe brain injury and facial injuries . We recently saw a Neuro psycotheratist. He said the area the brain is damaged has left my daughter with adhd symptoms OCD tourettes and post traumatic stress along with the memory loss . I was unaware also that a tbi could cause this ??? They (the doctors ) think medication will help with this ... I'm a bit sceptical/ dubious of medication . Anyone have any advice

Ivanlc profile image
Ivanlcβ€’ in reply toExhaust

Hi Exhaust.

I can only tell you of my own experiences of TBI and of the knowledge I've picked up over the last 18 years.

How old is your daughter and what state of consciousness is she currently in?

Was she in a coma, and if so, for how long? You can get an idea of the severity of a TBI from how long the person was comatose for.

I'm most impressed that the doc has recognised she has ADHD symptoms, as I've only recently discovered i exhibit the same symptoms, but there appears to be no official recognition of what I've now termed "acquired ADHD" (adapted from "acquired Brain Injury"), because the symptoms didn't develop in childhood, which needs to be the case for an ADHD diagnosis. So I'm most impressed by your doctor acknowledging the possibility of the damage to the brain being the cause of your daughter's ADHD symptoms.

You said you were unaware TBI could cause this. A brain injury is damage to the brain. Depending on how the damage happened, *any* part of the brain could be affected, which means you are, in theory, open to having/developing any recognised condition that can affect the brain, since the damage to the brain may mimic damage caused by other means.

Can I ask why you're so reluctant to try medication when it might help?

Exhaust profile image
Exhaustβ€’ in reply toIvanlc

Thank you for replying . She was in a RTA last Christmas has severe facial injuries and frontal brain injury. She was initially given 24hrs but fought her way through with the help of amazing doctors . She underwent 22 hrs of surgery (still has more to come ) she was in an induced coma for almost 3 weeks but took a while to respond when the sedatives were reduced . She amazed everyone and quickly improved . She couldn't eat so had a peg tracheotamy for 6 weeks about . Her short term memory was non existent long term unaffected . 3 months in hospital followed by 3 months in rehab . She is beginning to get some short term memory back . She has no concentration at all . She just walks all day . She is very restless agitated . Initially as a family we wanted her off all medications.... except the ant seizure drug . But seeing her so restless and anxious I'm willing to try anything ....

There is some suggestions on net that TBI in early yrs can possibly cause ADD. And as TBI can affect executive functions(with frontal). I nearly went down this road til GP sent referral to an Autism place-which was a waste of time as don't have to have Autism to have ADD,he knew better tho! As for the anti depressant/mood stabiliser thing-the NHS use these as is cheaper than them doing any actual investigations. As i also know-they also say 'just MH' cos of cutbacks in everything,and people in NHS in primary care only bothered about MH,which is now a derograry term meaning temporary. Now anti depressants are aparently a wonder drug for anxiety & depression-almost as if GP's paid by drug companies to get u to take,never mind suicidal affects,or becoming dependent on.

Mijmijkey74 profile image
Mijmijkey74

Maybe ADHD in children really is just tbi and why in anyone later in life with a tbi the medical professionals refuse to say tbi can cause ADHD because they already know ADHD is just a fancy name for tbi in children. And of course if they admit to ADHD in children being tbi they could find themselves in court for malpractices causing tbi in babies. Which they don't want out, so they dismiss adults and label kids as ADHD when really they have tbi caused during or at birth.

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