How to come to terms with daughter’s TBI?

Hi, my daughter suffered a TBI several years ago and is generally managing well but has been left with long term disabilities. I find it difficult to deal with the fact that the accident happened and how it has affected her life. As a mother the primeval urge to protect your child is strong so how do you ever come to terms with something like this? It’s annoying when people make comments like ‘She was lucky- it could have been worse’. I know it’s well intentioned and I’ve probably said the same thing myself but in what other context would you tell someone they were lucky to have a traumatic brain injury? I would say it’s extremely unlucky. Just venting- can’t talk to family as it’s too hard for them to talk about ...

[cat3]

Hi TBIX and welcome.

I was constantly told by hospital staff how lucky I was after surviving a SAH (Subarachnoid brain haemorrhage) in 2011 and couldn't grasp the concept of a near death experience as 'Lucky'.

But 6 months after my discharge the 'lucky' comments made sense. Whilst we were still adjusting to my own issues, my daughter phoned saying her dad (my ex husband) had been rushed to A&E, also with a SAH ! It was a dreadful shock. He survived for18 months in a minimally conscious state before he (big strong funny guy) sadly died. So, on reflection, I was lucky.

But I really do get how a mother's take on her child's difficulties with brain injury would be one of heartbreak. I know the misery of seeing your child struggling and being helpless to make it better, even in less challenging circumstances. All you can do is help your daughter adjust to her limitations whilst encouraging coping strategies (took me years to find the best ones).

Come and vent here safely anytime m'dear. Maybe tell us more about your girl's age and main issues (such as reduced mobility, poor word recall, fatigue or others). I ask about age as I wonder if she might care to join the forum ?

Hope to see you again soon... Cat x

[Hidden in reply to cat3]

Hi cat3, thanks for getting in touch and sharing what happened to you. I am sorry for what happened to you and as you say, it must’ve been a dreadful shock the fact that an SAH also happened to your daughter’s dad. And really awful that your daughter has had to deal with the same thing happening to both parents, though thankfully you are still here (I understand what you mean about the lucky comments!). My daughter is managing well, with limitations, she has permanent tinnitus and daily headaches/migraines (over 3 years later). These problems have affected her ability to work and sleep. I just can’t bear that she has to go through this (early 20s). I know I have to come to terms with it and to accept things as they are, but I find it incredibly hard to do that at times. I will always be there for her and be supportive and try to be upbeat, but it’s always there, under the surface, as brain injury is a hidden injury. I hope in time I will feel easier about it - a bit like grief. It’s like the saying ‘you’re only as happy as your saddest child’. Again, thank you for getting in touch - I do appreciate it 🙂

[cat3 in reply to Hidden]

I've had constant Tinnitus since an assault in my early thirties (long before my brain injury) so I can empathise with your daughter on that. I have been offered a special type of hearing aid (not for deafness) which masks the sound. This was delayed by Covid so I'm still waiting for my appointment to be reinstated.

Mine is like a jet aircraft and very invasive ; not so noticeable when I'm busy or distracted but more troublesome when trying to relax quietly, especially in bed.

I had migraines too for many years (mother had them). They were a persistent problem but, oddly, have reduced in frequency since the SAH. If your daughter's migraines always start with an aura (mine was bright lights like shimmering on water) there is medication which, if taken before the pain hits, can reverse the process.

The lights would start in the peripheral vision of my right eye and move across to my left (so I was temporarily blinded) and then the headache & nausea would take over. But with the meds the lights would start moving across my vision only to stop and reverse back from where they came .......so no headache !

I believe there are even more advanced treatments since those days. (apologies if you're already aware of this).

I think you're right about the grieving period, and that with time we do adjust and cope better. I guess your daughter will adjust sooner that you m'love ; mums are put on this earth to worry about their kids !

Take care TBIX and I hope there are better days ahead for both you and your girl. Cat x

ps "You're only as happy as your saddest child" - I haven't heard that before, but so poignant ......and SO true ! x

[Hidden in reply to cat3]

Hi cat3, that’s interesting about the medication for migraines- didn’t know about that and I’ll check it out x

[Painting-girl in reply to Hidden]

There are more options for migraines now, even botox can help some people apparently. My neurologist said that post traumatic migraine was different from ordinary migraine and it was resolvable. The neuropsychiatrist he sent me to for drugs said they don't prescribe pizitofen or beta blockers for post TBI migraine now, and that any beneficial effects of amitriptyline are mainly because it makes you sleep, On the other hand I can report that the Duloxetine, which he prescribed (which is usually for pain in fibromyalgia) cleared my migraines and 24/7 constant headaches - along with manipulation on my neck by a concussion specialist physio. So it's definitely not worth putting up with TBI headaches, even if it takes a bit of trial and error to sort something out (everyone reacts to drugs differently). Your first port of call is probably to either a neurologist or neuropsychiatrist who specialises in traumatic brain injury. Perhaps talk it over with the Headway helpline first? ( PS my headaches are gone, and only start to resurface if I let my fatigue get bad -.but nothing like they were for months originally. Plus I'm not on the Duloxetine anymore either)

[Hidden in reply to Painting-girl]

Thanks for that Painting-girl, the brain injury consultant thought the headaches should have resolved by now (that was about a year ago) and sent daughter for a CT scan, but it didn’t show up anything. I hadn’t thought about physio manipulation but that sounds hopeful and I’ll look into it. I am pleased for you that your headaches have gone (not counting the fatigue). It must be a blessed relief! Thanks again for all the helpful info 🙂

[Painting-girl in reply to Hidden]

Glad to help TBIX. MTBI often don't have anything showing on CT or MRI, it's only the fancier FMRI scans in research settings that are finding changes in the brain after mild TBI.

My neck issue wasn't sorted out by my regular physio, but by a physio who specialised in sports concussion rehab, with very different manipulation techniques. ( I'd been having work on ny neck through my regular physio, because I read that it could help, and it hadn't made any difference) he lectures, so there must be others too. (He could prod a point at the base of ny skull and trigger a worse headache...) I think he dealt with the 24/7 headache, but the migraine ones were different. I don't think they would have stopped without treatment, because I'd hit a pretty steady plateau symptom-wise when I started with that neurology team - about 10 months after my injury. I then made rapid new recovery in roughly the following 6-8 months, but was still improving and having treatment until the first lockdown.

See if your daughter will use the migraine buddy app in her phone - it can produces a downloadable headache and sleep diary record to show doctors ( helps to tell if any new treatment is working too). Botox is definitely one treatment for migraine, and there's other stuff to try too -though don't rule out drugs - which get an unfair rap really - because they can make a huge difference to quality of life

Hope your daughter can get some more help x

[Hidden in reply to Painting-girl]

Thank you, I will recommend the migraine buddy app - it would be helpful to keep a record x

[Marnie22]

Hi. It sounds like it has been a very difficult situation. If you are in the UK, I would suggest that you call the Headway helpline on 0808 800 2244. They can give support and advice and are very experienced in helping in such situations. They are happy to talk about anything and everything concerning brain injury. I have found them to be invaluable, sometimes particularly on the days where I just feel like screaming. Sending my best wishes. 🌼

[Hidden in reply to Marnie22]

Hi Marnie22, thank you for getting in touch. That is very helpful and I will call the Headway number in the likely event I feel the need to speak to someone. It’s often easier to speak with someone who is impartial and is a helpful stranger when going through challenging times. I am glad you have found them invaluable and I’m sure it has helped to speak to someone who ‘gets it’ and understands where you’re coming from. Thanks again, Take care 🙂

[Marnie22 in reply to Hidden]

Thank you. 🌼

[paxo05]

Hi ,I know the feeling of "being lucky".

I was, and am still told , I was very lucky to survive my rta.

But like you resent the fact that it wasnt luck me recieving a tbi. Was it even an accident as in my case the drive admitted seeing me.

It still grates on me when people tell me I was lucky. Yes I know I was . I am still here, but not the person or life I had before.

On the plus side I wouldnt know the people I do now, so that's a positive.

I wish the comment of being lucky would get easier but alas it still gets to me.

All the best to you and your daughter

Pax

[Hidden in reply to paxo05]

Hi Paxo05, yes it’s an unfortunate turn of phrase telling someone they are lucky when they’ve been anything but. I know they mean to say ‘you are lucky it wasn’t worse...’ but I understand how it grates on you as using the term ‘lucky’ in relation to a life changing accident can come across as grossly insensitive 😡, thank you for your comment and all the best to you too 🙂

[DawnD123]

This reminds me of my biggest bug “oh I have a bad memory too!”. I’m sure many will relate. I never say anything but always think “you don’t know half of the problems I have with bad memory” Wishing you all the best for the future x

[JoannaHelen in reply to DawnD123]

Hello Dawn, yes can't stand that comment. "I have a bad memory too", Or "Well your nearly 50 so it's probably getting old"!These comments from ignorant people have made me stop talking to people about my BI. I'd rather come on here and read other BI survivors comments.x

[Merl1n]

Or my favourite '...Ohh I get headaches too...' Not like these ya don't, these aren't just 'headaches', these are bolts of agony sent from the gates of HELL. 'But it can't be THAT bad...' Well, you lay down on the floor and I'll boot you in the side of the head, then you can tell me. It sure don't feel 'lucky' to me. Some people just can't comprehend the reality of it all and probably never will.

[Hidden in reply to Merl1n]

I think that a lot of people are completely clueless and ignorant of what brain injury survivors have been through and continue to go through. Seeing how my daughter has suffered and continues to do so years later has given me an understanding. The flippant comments show a complete lack of understanding and empathy and I can see why brain injury survivors don’t talk about it to others - you never know what response you’re going to get. My daughter was more or less told by several people that it was her own fault the accident happened because she’d had a couple of drinks! I feel like asking them how many times they’ve had a couple of drinks and not fallen and whacked their head? 😡 Merl1n, I hope your headaches improve and disappear altogether 🙂

[HungryHufflepuff]

I really thought I’d replied to you. But I seem to have not done. So I’ll just send lots of good wishes to you and your daughter.

[Hidden in reply to HungryHufflepuff]

Thank you for your kind words, HungryHufflepuff (your username made me laugh!) 🙂

[New_beginning]

I have just ordered a book writer Sarah Challice 'Who Cares? Maybe Look up see if resonates with you, directed towards carers.

[Hidden in reply to New_beginning]

Thank you 👍