I just joined. When I suffered my TBI (in 2000) I was desperate to understand what had happened to me and to talk to someone who could help. I live in Switzerland so I felt particularly isolated. Headway were wonderful and arranged support from a neuropsychologist in the UK as I'd only been abroad for 3 years.
Anyway, I've come a long way since then & if anyone wants to ask/talk about anything to do with frontal lobe trauma, working after TBI, fertility difficulties since TBI, depression, family, waking dreams & islands of memory....then maybe I could help.
Best wishes to anyone who's finding it hard to cope - things can improve.
37 Replies
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Thanks! I am doing great these days, and wanted to offer my support to anyone that feels I have something useful to offer!
waking dreams ? Islands of memory ? please tell me more....
Waking dreams - I was apparently conscious for the entire time I was in hospital (5 weeks) but I have no memory of it. I would wander around at night (and get shouted at in French as I wasn't wearing slippers!) looking for something in the hospitals I was in. One night a helicopter came over the hospital and I was convinced I was fighting in a war. I was looking for my fiancé in the hospital and thought I had guns & hand grenades. Another time I thought I was on a school trip with my class of kids & I set my alarm so I could be up & dressed & breakfasted before collecting them. As I was on my way out of the door to get them, a nurse saw me and told me to get back into my room!
During those 5 weeks I can remember little bits (going for a brain scan, seeing a neuropsychologist, meeting the man who caused the accident) and those are the 'islands of memory' that I have.
I found these bits really hard to understand, and I've found very little on the net about them.
Glad to hear things are on the up for you. What's the temperature thing like? I seem to always be hot these days, but I put that down to having my daughter & maybe early menopause!!
I remember it took me 8 years until I actually felt like myself again for the first time. But there's been loads of progress since then, but a little progress over a long period of time, if that makes sense! Weight - I was running to keep that down & to fight the depression, until I slipped a disc. I found it amazing what Wii fit can do...
The guy who caused mine was distracted by his daughter, who was screeching in the back of his car. Would have been rather nice if only his wife had turned around rather than him, as well. so he drove straight into me. I wanted to hate him for a while, but at the end of the day I've driven badly myself at times & been lucky I've never hurt anyone.
He rang me regularly for the first year or so and in the end I just said not to bother, because I wasn't better & wasn't going to be either. He felt v v guilty (as he should have). Swiss law meant he got fined a total of about £250 and that was that. I certainly hated Swiss law for that & got very angry!
It's amazing how different people's experiences of TBI are. I don't suppose you remember anything of the accident, as I don't.
I've heard of Raynaud's, friend had it. Yeah you're right, it's so individual. I was 28 when my accident happened. I was in the middle of a serious health kick so had never been fitter thankfully.
Never been so totally miserable as I was afterwards either. Main remaining prob is a fear of ever getting like that again and a bit of over-reliance on tranquilizers/anti-deps....
joanne welcome to the band of brother and sister survivors not much i can really say other than any advice should be welcome most tells one how to run ones life but i had mine in 2007 since which i have had to accept a gigantic change in life from good job about to be married now alone my decision as i will probably remain disabled and will never work againon state benefits as for the memeory no reason why should be affected deression i d sufffer from but my doc prescribes medication which helps as far as i am aware fertility isn;t affected but i must say i do have some very strange dreams usually good ones i usec to play professional rugby the strange dreams mostly about taking to the field and running like the wind to score or picking up my ex fiancee in an enormous hug both for me now impossible but nice to experience even in a dream neil
mcmurphy1951 your story is similar to mine although when you say strange dreams, my endocrine consultant told me it is due to the Levothyroxine, and I have some really weard ones; an example is in one of my dreams I went into the AUDI garage to buy a new car and all the staff were all naked, I became very crosss and complained that I could not focus on a car with all this sillyness around me. Now I'm worried about taking my car in for a service just in case I'm disapointed ha ha...my dreams switch from weard to scary
If ever you need to let off steam send me a message!
Neil, I'm so sorry for all that you've been through. To be left alone must be incredibly hard. Without my husband I don't think I would still be here.
Whilst my experience pales into insignificance beside yours, I went through a hideous time. Been trying to stop using anti-deps/tranquilisers for years but finally accepted I will always have to take the anti-deps as it keeps things under control. Just have to limit my use of tranquilizers - but that's in my own hands!
I think my fertility issues arose due to the intense stress of the experience of TBI and suddenly being unable to do the job I'd been doing successfully before. It takes away your identity. I thought to myself, ok, career's out of the window, so I'll be a mummy instead. Except that nothing worked! Eventually, with help, I managed to have my daughter, although contracted listeriosis which meant my twins were born at 6 months and one of them didn't make it. A really bad 4 years followed my TBI.
I was a good athlete when I was younger so started to run again - until I slipped a disc and that was the end of that!
It's amazing what rubbish life can throw at you and it's so hard to deal with. I feel like I'm finally able to manage it all now and if anyone wanted to 'talk/type' their feelings, I'd be happy to listen/read.
Part of me is glad that you have benefits (I got nothing) but on the other hand obviously you suffered a lot more than me & therefore it's horrible that you have to rely on them.
Best wishes x Jo
Good for you. There are many great things about this life - just have to remind ourselves of that every now & again!
Good luck in the search...bet you find someone. Might take that magic thing, time....sorry....
I was never 'out of it' but did lose my memory for a year, which was very frightening not knowing who most people were or remembering what I'd done, said or where I'd been. You mention ferility problems, it never occured to me that there would be any problems, and although I'm 'past it and gay' when I was casually told by a nurse in an open clinic that I was infertile, I became very distressed, and took me a while to calm down and accept that I had never wanted children, or been in a position to have them, but being told it was not possible was very traumatic. I've found that often these things have been assumed by nurses and doctors and not discussed. When I broached the subject of loss of sex drive with my GP his response was 'but your single'. Fortunatly my consultant took this more seriously and put me on replacement treatment
Jeez it's amazing how insensitive some people can be, especially those that should the be MOST sensitive.
Basically, my periods just stopped & wouldn't come back. Spent a fortune on testing kits in case by some miracle I was pregnant. But no. I had a series of highly unpleasant investigations performed and then had to inject myself daily to make things work out and finally success! Sadly for me, I then contracted listeriosis at 6 months pregnancy; one of my twins didn't make it. But I'm so lucky to have the one that did! Speaking of insensitivity, the nurse with me in the hospital after the cesarean kept telling me I 'must be particularly unfit to not be able to slow my breathing & come out of the effects of the cesarean'. Bitch. I'd just lost one of my kids, not the most helpful of comments!
I found losing my memory for 5 weeks terrifying, can't imagine what it's like to lose a year. It's really scary not knowing what you did/didn't do. Apparently I was particularly affectionate to my boyfriend & kept going to the bathroom in the hospital to get people G&Ts & wine!
As for sex drive, I didn't have a clue what sex was all about for getting on for a year. Poor boyfriend, who'd in between times become fiancé, god knows why!
As you mention there, I think it's the removal of choice which is very distressing. I felt like I was no longer able to be a teacher & didn't know what else I could do, then I couldn't be a particularly good girlfriend, or a mum....I felt totally lost, and I wasn't even really badly affected, unlike a lot of people on here.
I am so very sorry to hear about you loosing a baby, that must have been heart breaking, it is sad and disapointing that so many medical people can be so dismissive of the emotional elements of treament/recovery/affects. While I lost my memory and lost my sense of smell due to frontal lobe trauma twice I set the kitchen on fire after putting the dinner on and then forgetting it. Thanks to my little dog she barked and lead me to the kitchen, I also insured the house 5 times, heaven only knows why. I like your story about the G nT's sounds like you kept your sense of humour. I do remember going out and a man shook my hand, and I became very distressed as I did not know why he was touching me, I lost social skills in that I did not know why people were doing 'what they were doing' and not knowing made me feel as though I was some how on a paralel universe watching but not understanding, During this time I relied on my dog, if she trusted someone I would follow her, and if she was not sure neither would I be
Dogs are fab. That's one good result of being unable to work full time - I now have a dog. And no matter how crap the day, my dog loves me!
I think I over-paid/forgot to pay lots of bills. My boyfriend then/husband now kind of gave me responsibility for paying bills to make me feel I could still do something more interesting than cleaning the flat. Think he regretted it!
I found out who my friends were, as I couldn't cope with long conversations & became somewhat self-obsessed - even my parents were finding me boring after hearing all about how fed up I was every time I spoke to them.
Its good to hear that we are not alone. I had a TBI in 2001. Gave my friend a drive of my car and he wouldn't slow down on a country road, he lost control at 70mph at a bend and flipt the car hitting a tree so my head took the impact hitting the roof. In a coma for few days, Took couple years to recover. I have been through a lot. Im lucky i have no physical defects. But I have had problems with stress, depression, anxiety and anger through the years. A few months back had a nervous breakdown so that was a big set back, Iv never felt this bad although I am coming round and I am on the right path to getting betting. I think it was a big wake up call so time to grow up more and live life to the full, ever more. When we go through having an big accident we realise how lucky we are to have a second chance, never forget this (i think it every day) so im thankful of life (even though i sometimes wish i was not living)
Joel..
Hi,
Know just what you mean. My accident was nothing like as serious as many I've read about on here, but the effects have been long-lasting & cover many different areas of my life. Like you, I had a breakdown/major depression & I have suffered from stress at any given opportunity, but I am doing a lot better now & am thankful for every day too. I feel vulnerable knowing that a millisecond's lack of care & attention by anyone on the road can have life-long effects.
It's good to hear you're on the right track to recovery & I wish you all the best for an ever-increasing recovery. The benefits for me have been considerable; I see myself as a more caring and positive than I was before, and I know myself a lot better. Thanks for your positivity.
Guess you won't letting your friends drive your car again!
thank you all for your kind and thoughtful comments about me i want to be very clear i take full responsibility for my injury sure i earnt a lot of money in a dream job was madly in love but i ignored all the warnings especially from my fiancee about my irresponsible overspending credit cards laons etc building u a stress level that nearly killed me i was so lucky to survive the way i have only my balance has been affected i now walk with a stick i really am pessimistic about working again god bless neil
Hi Joanna, I have a question...my friend B is, I think from your description, experiencing waking dreams. B can sometimes discuss what is happening to her with me (no memory of events even 7 years ago, having a brain injury, being in hospital) but at other times will not believe me when I say what has happened and why she is unable to go home. Can you tell me what you found helpful when you were having these experiences? Thanks for your time.
My waking dreams only happened when I was in the early stages of recovery - the first 5 weeks. I wonder if perhaps B has post-traumatic amnesia or other memory damage, if she's still having difficulty remembering even quite everyday things? It sounds like she could do with seeing a neuropsychologist. That's only my thoughts & could be completely off, of course.
When these things happened to me I was really quite out of it & have only these 'islands of memory'. Just having people visit me regularly helped a lot. Good friends sent me photos of myself when I was young to help memories come back. Now, I don't seem to remember things from the past until someone brings them up & then I'm really surprised that I was there/did those things.
I think B will thoroughly appreciate having a good friend like you around. I certainly found out who my true friends were (the ones that came out to see me, as opposed to the ones who just thought my behaviour was amusing). Good on you.
two cakes please dont panic nor feel guilt when i woke i was talking total rubbish insisting i should be allowed to do things totally impractical nor possible i hadnt even stood up but insisited i was well enough to return to my home ( in spain ) along with the embarrassing fact that i had a job and still married to the wife i was divorced from 13 years before it took a huge bollocking with tears from my fiancee for me to see sense i eventually was discharged 16 months afterwards the strange dreams will continue a positive aspect is if dreaming at least your friend i sleeping wellh
The problem I had was that the sleep I was experiencing wasn't restful sleep. After I became convinced I was fighting in the army, I saw a psychiatrist for the first time, who prescribed benzodiazipan. (apologies for spelling error there!). At last I slept and soon after that I began to 'make more sense' and know what was going on around me.
In my experience recovery takes in excess of 10 years, 15 years is even better.
Forty five years on I am as complete as I can be but I was surprised that you mention 'fertility' as a fault of a TBI. I found my libido insatiable and that really got on my nerves and any girl who was unlucky enough to have met me.
As for medication - after two years of rattling with the amount I was expected to take I threw the lot away. My Doctor said I'd made a big mistake; however I've never fitted and the level of depression, when it comes nowadays, is nowhere near as dark as my immediate post op depths.
Two weeks after my discharge from Hospital I went to work. I was sacked and this continued for a couple of years. Seven years after my accident I pursued my professional qualifications which I achieved with 'distinction.' [Surprise that because I don't remember any of it to be honest].
I've managed to fit in all the things I've wanted to do - except the driving bit [for obvious reasons] but I still have a few after effects which will now, not go. However, I have evolved a few tricks to try to get around them.
my fertility and libido went when my pituitry gland died after the radiation treatment, I understand (and could be wrong) that any trauma to the frontal lobe area or front of skull can traumatise the pituitry gland....this is the gland which produes all hormones. I like your comment re 'instable' as I went through the mill when I began hormone replacement, one minute I was like a woman going through a bad menapause and then when I started on the NBEDO (testosterone) I went from no interest to being like a 14 year old not able to take my mind off.
Interesting point about frontal lobe damage. When attempting to get compensation, I was told there was no way to prove there was any link between my lack of menstrual cycle and my TBI. But having researched it a bit myself, as you say, there seems to be a strong link between the two. Damn, would have loved some more cash!!
why cant nerologists and Psycologists be as educated/exsperianced on the affects of A TBI as you guys are. I have decribed so many symptoms to my Doc that are coverd so many times on here and nothing was ever done to help me or explain why i had them... it was just normal. I so wanted a neuro phycologist coz i thort they would know more... as my phychatrist treated me for PTSD and didnt really understand the things i cried out about just said it is all a feeling.and in my head which can be changed! 3 years on and i have not had a neuro physcologist nor an OT to help with cognitive stuff. Guess it depends on who you get what area you are in. So thanks you peeps for making me see I am not alone
Inmy experiance GP's are not really up on this area or the associated areas, I am very lucky to be under several consultants all dealing with specific areas relating to my codition, My suggestion would be to ask either your main consultant or your GP for relevant referals to speicalists in each field
My GP is fantastic, but even she let me go back to work far too early _(TBI June, back to work Oct). Even worse, the neurologist who was in charge of me at the hospital I was flown to, asked me to go back to see him in August. I said 'What about work?' and he said 'Oh, you can go back and forget all about this'. What a joke. When I told my GP she referred me to a neuropsychologist who tested me. On one test, I could come up with a grand total of 3 words beginning with s in 2 minutes. Clearly, I was nowhere near ready to teach 25 6 year olds if I couldn't even find words!
Neuropsychologists are fabulous and, in my opinion, the only ones in the medical profession who truly understand what a TBI involves.
Get in touch with Headway directly & tell them you need to see a neuropsych. They sorted me out with one and it was the best thing that could have happened to me.
Hi Everyone! I have been stuck to my chair reading everything you have been saying, thank you all for sharing everything. I have no way been as badly affected by my SAH but can understand a little what you have been through. Its no consolation, and doesnt help any of you but im so sorry but the way some people have treated you and what you have been thro, god bless all of you, big hugs, Linda xx
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