Just discovered this site- wow, what a blessing. So I was violently attacked a year ago which gave me a severe head injury that triggered a year long psychotic episode. The psychosis is getting better although I still hear voices, and I am still in chronic pain much of the time.
I'm a bit afraid to go to the doctors and have avoided them... but I think I should go.
Its hard living with this during covid. I'm very isolated and find all the emotions and parts of myself that have been displaced from my injury very tough on the soul.
Thanks for listening, here with you all the way x
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smiley_pineapple
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Sorry to hear you have had to endure not only an attack but longer term consequences following the incident. I am glad some symptoms have eased a little but sounds like you have some way to go. Unsurprisingly, it does sound like you need to follow your own advice and visit your doctor.
You mention the additional difficulty during covid. I assume you are therefore living on your own? If so, I can imagine it being really difficult for you. Maybe you could reach out and call headway themselves to see if they can offer any advice/support? Not used them myself but only heard good things headway.org.uk/
Those are all great ideas that I'm going to get on next week. You kind of adjust after a while but it is tough. A year in isn't very long into recovery either so I think I'm doing alright. Lots of love x
Hi.Yes a year is a very short time after a brain injury, when I was discharged from hospital after my TBI I was just left to get on with it and in the first year I was thinking that if the hospital has sent me home then I must be ok. I pushed myself every day but all I was doing was making things worse, I then discovered headway and went to my local branch once a week, headway will help you so much , please do get in touch with them and also your gp,
But dont expect your gp to know much about brain injury, I was really stubborn and thought that getting over a brain injury would be the same as any other injury.
Thank you for sharing, yes its one of those things that are impossible to really understand until you have the experience. I've heard great things about headway, I'm going to get in touch soon.
You take care too, and be kind to yourself. Thanks
I think I want to. hug you. This is my first posting on here after only realising Headway were on here! I have used this site for other groups and have been a client of Headway for years but never saw this group. I am also a survivor of TBI through violent assault. It was because of your post that am writing my first ever anything on here. If you don't feel comfortable seeing your doctor go to the headway website and find more options to help you get answers for your questions or care reviews. I was referred by my neuropsychologist but I only saw her after maybe 2 years after my injury due to fatigue os severe I couldn't stay awake for. more than 1 hour so any appointments. were after maybe 3 years. I also have PTSD which. was another referral needed and a whole new life to adjust to. Headway helped. with all aspects and what I thought was silly or stupid they made me feel no big deal and I wasn't the only one. They supported me throughout the police and legal aspects and held my hand throughout giving statements for my attackers parole hearings.I really feel you and please consider this-my first ever join in post- a "hug" from me. if you need anything please reach to me sending love
Thank you for your bravery in sharing that with me. I have PTSD too, its a journey and a half. That's great you have a neurologist, think I should go ahead and try and get the support I need (been avoiding NHS since covid hit and seeing if it would get better on its own.) I really hope everything works out for you, thank you xxx
I have been Epileptic since childhood so I have ALWAYS had neurologist but after the TBI I was referred to a neuropsychologist to help with my aphasia and cognitive difficulties. For the PTSD I was referred to a new type of therapy called RELIVING. I had had CBT before at the eating disorder hospital and it never really benefitted me. I have carers that come everyday and my house is Epilepsy-proof with alarms and such. Headway organised most of my care. In fact, the East London branch was where I did my video statement for the parole hearing! I wanted to be somewhere I felt safe but my house was too personal. My attacker might be watching it and I didnt want to feel exposed and vulnerable. I wanted to go in and KICK ASS! And I did! Question...do you know if PTSD ever goes away or just can show up ugly again at any time? Can you get a neurologist? Mine is at Queens Square which is like the huge kingdom of brain disorders hahahah. I am so glad you found this page! xoxo
Well, my PTSD comes and goes really. I think as you get the tools to get along with it it gets better.... some traumas just take a long time I guess! Reliving sounds interesting. I got really into this type of yoga called 'feldenkrais' (definitely check it out!) Its like micro yoga and meant to be good for all sorts of neurological conditions xxxx
So sorry for what you are going through. Do try and talk to Headway and ring your doctor, and get some help with the pain. People here will always try and help, even of you just need to 'say out loud' if you are having a rough time Jen x
Hi, it is important that you seek some professional help with your symptoms. That is all they are, symptoms. But you don't need to struggle with them alone. There are many reasons for psychosis, but in general the longer you experience them the more difficult they are to resolve.
You are not mad or weird, you have a head injury, I spend half my time explaining the difference between a head injury and that of mental illness. As a retired RN(MH) it really gets my goat when they are lumped together.
Speak to your GP, explain the circumstances of your injury, and the symptoms you experience. Don't get fobbed off with the generic mental health services, ask to be referred to a neuro-psychiatrist, don't be put off by the term psychiatrist, the prefix Neuro is the important bit. The injury will guide the treatment. It may not be to dissimilar to that of a general mental illness, but it is important that the injury is accounted for as sometimes treat the injury, solve the problems.
That's great advice, it is the generic mental health services that have really put me off and disheartened me in trying to get further help so yes that is a brilliant piece of advice. Thank you x
The difference between a generic psychiatrist and a neuro-psychiatrist is the point they start from.
A generic psychiatrist knows that there is a fault in the thinking of the subject and attempts to correct the fault.
A neuro-psychiatrist knows that there is a physical problem with the way the brain functions. Depending on the part of the brain that is damaged is likely to have a different impact on the brain function.
The treatments maybe very similar, but the start of the diagnosis is the part that makes the difference.
I have a diagnosis of neuro-psychiatric syndrome, this is a cluster of symptoms caused by the particular damage my brain has (a generic psychiatrist would attempt to pick the symptoms apart, in reality, they all originate from the damage).
I also have a diagnosis of A-motivational syndrome, this I was informed only occurs due to illicit drugs use, by a senior general nurse.
I was a RN (MH) before I had to retire. If I had not gone through what I had, I might have agreed. I have had so many conversations with GPs, ambulance crew, and hospital medics about the difference between brain damage and mental illness. I'm often met with a wide eyed look of disbelief, but because of my background I can explain why brain injury is not a mental illness.
We all, brain injury or not, have mental health, but we don't all have mental illness.
It is a case of horses for courses. An aircraft mechanic might be able to get your car working, but I wouldn't trust a car mechanic with an aircraft.
I have received shockingly bad treatment from general medical services when they think 'nutter'. Mental illness scares general services, because they look at you as unpredictable.
wow this is all fascinating! I never knew! wait-So...my eating disorders sent me to a psychiatrist but (lets imagine for a moment my TBI was caused in relation to my ED) any physical damage to the brain causing mental health difficulties would send me to a neuropsychritist? Is that right? And I dig your likening. it to mechanics-made it a lot easier for me to understand and was fun too! xoxo
Yes a TBI should be treated by a neuro-psychiatrist. But if your ED was prior to the TBI then you would receive treatment from a psychiatrist specialising in ED, and a neuro-psychiatrist would treat the TBI. Hopefully both would consult each other so they don't step on each others toes.
Now if you developed an ED after a TBI the neuro-psychiatrist might be able to understand what part of the brain is related to the ED, therefore may be able to treat the symptoms.
There are many specialities in psychiatry, as there are with physical medicine. Get the wrong one and the treatment is likely to be a mismatch.
You have a GP who can treat many ailments, but their speciality is knowing where to refer people to when an ailment/illness goes beyond their remit.
You have generic psychiatrist that can treat many MH illnesses, but they should know when to refer to a specialist.
I worked many years in forensic psychiatry, but I had experience in LD, elderly, self harm, and community. I went on to specialise in violence reduction, becoming the Trust Lead.
Thinking of the mechanics again, but bring it into medicine, a cardiologist has trained for many years to understand illnesses of the heart and circulation, but if I broke my leg, the last Dr I'd want to see is a cardiologist, I'd hope to be treated by an orthopedic specialist.
It does get even more complicated, because you get orthopedic specialist, but if it involves a joint through ware and tear, then you may want a rheumatologist to be part of the treatment, then you get the surgical specialists.
I think this is why some people go through ineffective treatment for year's, sometimes an ailment can be so niche, it is by luck you find the correct treatment.
Now that has probably confused the whole kit and caboodle.
This is why complex cases end up with a multi-disciplinary teams, drawing from several disciplines including social worker, physio, occupational therapy, medics etc. and they maybe drawn from different specialities.
This also may put you on a certain care pathway, e.g. standard care, or enhanced care.
This is what I would consider gold standard care. Unfortunately it is becoming a rare phenomena in modern care. But it is the standard that I was involved in providing.
Sorry a very long explanation, but the more you get into it, there is an infinite range of specialties, both in physical medicine, psychology, psychiatry etc, etc.
WOW! YOU ARE GRREAT! You explained it JUST as I needed it. To put it in the story...I have EDs since I was 15. 1982. I have had Epilepsy since childhood. I had my TBI as a result of a kidnapping/attempted murder in 2015. I am 53 now. I grew up with neurologists and then psychiatrists in my teens for Eds and my mothers death. Then I had a TBI. 2015. THATS when a neuropsytrist would have come in yes? Or in my teens to treat the Eds and also a physical knowledge of my Epilepsy? Now you see how I can get so confused hahahhahahah. And add the medication into it and you could end up in a big mess! Epilepsy medication can be interchangeable with medication for mental health issues so I was a pretty soaked out kid on phenobarbital at age 5! But once you have a good speaking honest relationship with your doctor NEVER LET HIM GO! I never found a good therapist but had good neurologists and neuropsychologists and my GP. I never ever had a comfortable feeling with any therapist. I envy those who do.,
I'd hope you would have had a neurologist involve with your epilepsy,
Therapist come in many forms, and follow different theories. Therapy isn't for everyone, but the nature of therapy is to explore sometimes what we don't want to face, and can be very uncomfortable to start with. Again it is more by luck than judgement if you form a trusting relationship.
I have been thinking of you. Please check in so we know you are around even if not wanting to talk. Everyone is different and I don't think anyone can imagine how devastating a TBI is until they are close to it themselves or a loved one. I thought it was like any other injury. I SLEPT FOR 3 YEARS! And I was low at one point scared for myself. My brother, a cop in USA, called the police over here and made them do welfare checks on me daily! It does get better. I promise. I refused to let her win! (My attacker was a woman-and 3 men). She robbed me of my security, my money, my brain functions and changed my life. Like hell was I going to let her rob me of my joy and my kind disposition! I will not let her turn me into a bitter and suspicious foul tempered person. It took a while but I got "me" back although somewhat changed still me. Be you. Always.
You are an incredible soul to have the courage to keep fighting after your injury (and winning) it was a woman who assaulted me also. A complex scenario that I should never have got caught up in (was at a festival and it wasn't exactly safe). Glad your brother is looking out for you. There's something about tbi thats different to other injuries, it requires a new kind of strength to emerge. Thats the beauty and power of our brains, they're beautiful just the way they are and this journey makes us stronger people. Its given me new kinds of compassion. I prayed and asked about how I could link the past me with the future me and got the answer: 'the soul, the spirit is eternal so you don't need to be bound by this way of thinking.' xxx
I am hugging you now. I hope you feel it. Thank you. Yes I had some support but my brother lives in USA and I have no other family so had it not been for Headway and a few good friends I would have been completely alone. You have a new you. Once you get to know the new you and understand the new you and your new limitations and capabilities you sort of make peace with it and accept your new brain and the soul and your true core of you from before has not changed-perhaps some behavioural changes due to injury perhaps-and your true inner self can merge with your new brain instead of mourning for your old one. Then you can really shine and progress. As long as no one steals your truth and your hope and beauty the future belongs to you. NO ONE can steal my joy without my consent. She violated me and damaged me enough. I am adjusting to my new brain and way of life and with work and support I can achieve great things and happiness. She cant steal that. Okay maybe once in a while I still wake up screaming and get flashbacks but even those are fading. And attending the parole hearing and giving my statement has finally given me closure and MY GOD do I feel so free! I wanted to forgive her-not for her but for me because I hated being bitter and suspicious and full of hate and I was having dreams of killing her and waking up HAPPY! I never want to be the kind of person who is happy when they dream of harming and torturuing someone! I still haven't forgiven her but I don't carry hate in me anymore it is closed. Hate had infected my soul. I got my old clean truth essence soul heart whatever you want to call it-back. My new brain and my recovered soul are learning to get used to each other. EXACTLY as you said-linking the old with the new. And YES to what you said about compassion....OMG I never would ever have believed any of what a TBI is really like! If you want to PM me please do. Sometimes I sleep for over 24 hours so take that into consideration but apart from days of sleeping I am always around whenever you want to chat. and we were both assaulted by women. Weird. I am glad you are here. xoxoitv.com/news/london/update/...
So perfectly put, I couldn't have said it better myself. The flashbacks are getting better, lots of things I can't eat anymore (and no caffeine, beer or sugar really!!) It is like you say- getting used to a new brain but your essence is still there and it takes a while to adjust and bring it all together again, rebuild, neurogenesis I guess. We all have it within us, and it makes me so hopeful to hear of your thriving against the odds spiritually after being so wounded. I'm glad you got the result you needed from the parole, my attacker is still out there but I kind of pity her (as well as fearing her a bit, its hard not to). You're welcome to chat anytime also! Its been about a year for me all in all... not very long. But once you get on that determined upward trajectory and gain traction/ move past the grief it becomes much easier to stay in that mode. Hehe, tell me about it (been asleep for most of today) but the winter months are for hibernating anyway. Lots of love to you sister! xxx
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