TBI 1 year on: hey all, so I posted about this... - Headway

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TBI 1 year on

Tubbytommy profile image
18 Replies

hey all, so I posted about this probably more than a year ago. So for context I was assaulted punched repeatedly in the head and have been left dead in my left ear, at the time I was forgetful and struggled to say the most basic words and went a saw a neurologist who actually pointed me here.

I was told I had a mild TBI and that things would gradually improve. Moved on to other doctors and things and got sorted for hearing aids (another source of depression).

So the assault was 2023 and I’m here today still struggling with migraines, can’t remember words and struggle to communicate when talking to anyone. I still go to work although I work in an office 2 days a week minimum and do what I can from home the other days. My real issue is the constant headaches and feeling like an idiot for not being able to hold a conversation without me forgetting what I want to say.

Depression side I joined a group called andys man club which supports me and helps me but I still feel useless and really just want to know if this will ever sort itself out? I struggle to complete basic tasks and just randomly cry out of nowhere. I have an upcoming court date and when I say upcoming it’s currently Jan 2026.

I’m booked to see a neurologist on the 11th March but I’m just struggling so much at the moment.

Sorry for the ramble and if you’ve made it this far thank you.

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Tubbytommy profile image
Tubbytommy
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18 Replies
Headinjuryhypo1 profile image
Headinjuryhypo1

Dear Tubbytommy, depression and brain fog after head injury can sometimes be caused by damage to your pituitary gland. If the gland can't make the hormones you need you can be left with all kinds of symptoms, not just what you've described but others like loss of sex drive, loss of muscle, weight gain, fatigue, etc. If you look up 'hypopituitarism' you will find a long list. The hormone you are most likely to be short of is growth hormone. Replacing it (which has to be life long daily injections) can make you feel much better. Hypopituitarism happens after a quarter of serious head injuries and after around 15% of concussions so it's a real possibility. If you want advice about what to do, the Pituitary Foundation is a good source, also our charity, Christopher Lane Trust, can advise you. Good luck!

Harrys profile image
Harrys in reply toHeadinjuryhypo1

Hi my son had a brain abscess in 2013 his now 26 still suffers with constant head pain tried all sorts nothing has worked the only thing that gives him some relief is smokin cannabis.Have you tried this ? Good luck with your court case did you know the person that done that to you ?

Headinjuryhypo1 profile image
Headinjuryhypo1 in reply toHarrys

I think you meant to reply to Ballsintheair . . .

Harrys profile image
Harrys in reply toHeadinjuryhypo1

Hi sorry about that , I just read your story very sad . I always think I hope my son never ever does that .xx

Headinjuryhypo1 profile image
Headinjuryhypo1 in reply toHarrys

I hope so too! Thanks for reading my story. x

Teazymaid profile image
Teazymaid in reply toHeadinjuryhypo1

I also have just read your story and want to thank you for wanting to share tthe advice you have gathered along your heart breaking journey .. sending a huge hug and thank you for remaining in this forum , which for me has been the best place to be since my accident Sue x

Headinjuryhypo1 profile image
Headinjuryhypo1 in reply toTeazymaid

Thank you Sue. I think this forum is excellent and must be a lifeline for lots of people. Huge hug back! Joanna x

Teazymaid profile image
Teazymaid in reply toHarrys

Hi . I’ve just read your story also and so pleased your son won his PIP tribunal something I did two days ago .. I’m still waiting for the reality to sink in . What an appalling process to put people though because of their ignorance on TBI Sue 🥴

Harrys profile image
Harrys in reply toTeazymaid

Hi yes he did and we have just got the new pup review forms to fill out all again . Same questions all again when nothing changes surely there should just be box to tick . Botox had no effect at all and the pain management wouldn’t even give it a go as Harry didn’t seem keen enough ! He then done talking therapy and the woman was more interested in looking at her watch and seeing how much time was left !

Teazymaid profile image
Teazymaid in reply toHarrys

I will be writing to every question they asked of me the next time that nothing has changed since my hearing at my tribunal .there was a judge sitting to make sure that the law was upheld and the date of that tribunal .. they use what you say against you as they did with me and there appalling lack of knowledge on BRAIN injury .. I have had 13 months of even more hell caused by the DWP While attempting to exist in life with Brain damage and I never want to go though is again .. Sue 🥴

Harrys profile image
Harrys in reply toTeazymaid

What a good idea we have started to fill out form already but I will add the bit about the judge and date at the end thank you xx

Ballsintheair profile image
Ballsintheair in reply toHeadinjuryhypo1

Wow that’s interesting, I never knew that! Is it something that doctors can test for?

Headinjuryhypo1 profile image
Headinjuryhypo1 in reply toBallsintheair

Yes, your GP will give you a basic pituitary panel, testing for thyroid hormone, sex hormones and some others. But for cortisol and growth hormone you need to be referred to an endocrinologist and ask for the insulin stress test or the glucagon stimulation test (or, less accurate but cheaper) the macimorelin test. It is a struggle, I should warn you. I have to go out now, back later. There is a LOT more that I could tell you!

GCS3 profile image
GCS3

My advice would be to try to be patient. It sounds as though you have done really well under the circumstances so far, and a year is actually not a long time after what you suffered. It is said that progress after a TBI takes up to 2 years, however that is far from correct. Progress is ongoing for many, many years - particularly if you're proactive & make sure you see the relevant specialists . . it sounds like you're doing this. Headway National in Nottingham has information booklets/publications which are really informative. ( headway.uk.org and shop.headway.org.uk/publica... ) Make a list of all your queries for the appointment on 11th March so that you can get the most out of the appointment. Keep reaching out to people who are supportive and helpful, and progress will come.

Suwariwaza profile image
Suwariwaza

I just wanted to say, I recognise what you’re experiencing, as I often have problems with remembering what I was going to say. Often I have to ask people to remind me what the whole conversation’s about.

I don’t have any real answers for you. I’m new on here myself. But I’ve found it really helpful just to know that other people recognise what I’m talking about on here. It’s generally not the case in everyday life.

Good luck!

Ballsintheair profile image
Ballsintheair

Well done for everything you’ve achieved so far.

It should gradually improve - my husband was very confused for the first two years and now five years on has improved a lot is able to work part-time.

He finds the brain fog worst in the morning so always needs to stay awake in bed for a while before getting up.

He’s now more attuned to his body - and recognising how mentally tired he can become even when he’s not physically tired. It can be hard to know when you just need to rest your brain.

You sound like you’re doing brilliantly, it just takes time. Good luck.

Teazymaid profile image
Teazymaid

hi and what a nightmare have the court case so far away .. this alone will be having a big impact on you .

I’m sure people on here will help you understand what it is like in the early stages of a brain injury .. as a year is still very early stage ..

I’m 4 years past and still trying to learn how to deal with this new me and the last 12 months has been the start of coming out of denial and beginning to except this new wonky me ..

The bit I would say is going for counselling is a big part of this .. I had 6 months counselling with my husband last year and have been trying to find a counsellor that specialises in brain damage and am about to contact them .. all of this unfortunately is private as neuro in Cornwall is non existent and very minimal in most places.

I need help dealing with how emotional different I am , how I feel like I died and woke up in a new body with a very strange brain .. the world / life is very different for me ..

But for you I would advise you to go to a counsellor . If the one you see doesn’t seem right for you ask to see another one as sometimes they are not the right person for you and they all very as they are also a human 😊 .. with this you can learn to deal with the trauma you have experienced find a place to store it in your mind where it will be organised and easier to live with .. this will help reduce stress , anxiety, depression which has a huge impact on us … keep sharing on here as this is an amazing part of therapy for all of us … Sue x

James1984 profile image
James1984

Hi Tommy, what sort of tests and scans did you get? How long after the injury were the scans performed? Did the Neurologist pick up on any damage?

Start by keeping a diary of all your symptoms, when and where they occur. It will help down the track if you need to see other Specialists.

You probably need to wind back on work to something more manageable. I know you still have bills to pay so consider applying for disability support through the government.

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