TBI 20 years on

[Milano24]

I suffered a 'severe head injury' 20 years ago in an RTA. I have managed so far to navigate life but have found that recentlyI'm really struggling with my memory, concentration, patience etc - this is causing anxiety and panic attacks which are affecting my job as a teacher. My GP keeps giving me medication for depression / anxiety and when I mentioned my previous head injuries she just dismissed it.... Has anyone got any advice? My coping / compensatory strategies that i've used for the past 20 years are no longer hiding it!!

[Marnie22]

Trigger warning.

Hi. It's my experience that a lot of GPs have very little understanding and experience of brain injuries. My injury was just under five years ago but I found doctors mistaking brain injury problems for depression etc. I was injured in hospital by a surgeon who then lied on my discharge papers, so no doctors would believe me and I had zero support. When I asked for help from my local mental health services they refused any help except pills, even after I told my GP and a psychiatrist that I was having suicidal thoughts.

I eventually found a GP who believed me and through them I got a referral to a neuropsychologist. This might be a route for you. A neuropsychologist can find out how the brain injury impacts your life generally and also look at how your emotions and mental health are affected. The lady I saw diagnosed me with Post Traumatic Stress Disorder and I eventually saw a psychologist through my GP. I have been having EMDR therapy and it has been very helpful.

One problem is that the questionnaires etc. that people fill in to see if someone has depression, anxiety etc. can give very inaccurate results when the subject has a brain injury. Lots of the difficulties a brain injured person may have sound like depression, but they are not! Examples would be: fatigue; difficulty concentrating; disrupted sleeping patterns; poor concentration; irritation; anger; memory problems. The list is extensive. If a health professional lacks knowledge about brain injuries, they are very likely to misinterpret symptoms.

Would you consider changing your GP? I changed mine, but stayed with the same practice.

I would strongly recommend calling the Headway helpline on 0808 800 2244 as they will be supportive and will have ideas to help.

You could also look into getting an advocate to assist you. If you search online, most local authorities have advocacy services that are free if you fit their criteria. I have had advocates attend doctor's appointments, PIP assessments etc. and they really are helpful, even just them being there is good.

I do wish you all the best.

🙂🌸

BTW, before my injury, I was a teacher too, but I can't work since then.

[Milano24 in reply to Marnie22]

That’s really helpful - thank you. I have forwarded an information sheet to my GP which headway sent me ‘A guide for GPs’ which suggests the neuropsychology route - I’ll see what happens. She was querying ADHD...... and sending me to a psychiatrist!!

[Marnie22 in reply to Milano24]

The ADHD thing struck me - I was told by the neuropsychologist that my attention skills were poor after the brain injury. In my job I worked with lots of children with ADHD and ADD, and I noticed big similarities with my attention and concentration after the injury. But of course, I don't have ADHD, I have a brain injury!

If I were you, I would put off seeing a psychiatrist until you can see someone with specialist brain injury knowledge - just my opinion. I didn't realise until I saw a psychiatrist that they only really give out drugs. Help with understanding and dealing with mental health issues is a psychologist's speciality, but on the NHS, you get fobbed off with seeing a psychiatrist and just loaded up with pills. The two times I have managed to get to see a psychologist, it has been much more productive. The lady who has been giving me EMDR didn't know very much about brain injury, but she went to a colleague who did and has been really understanding.

I do hope you find the right support. 🙂🌸

[sospan]

Without knowing you, please forgive me for making a sweeping assumption.

20 years post injury you have coped very, very well especially in a very demanding role. As an ex teacher, even in the 80's it was stressful let alone now.

With a head injury, the symptoms start are so noticeable at first, peak and then over time aren't so much of an issue as new pathways develop and we put in place our own coping mechanisms. Rarely, do they then start to rise up in the future.

I believe you are caught up in a circular chain of events/symptoms. Something e.g. even a small life event has triggered something they rumination. The GP has prescribed medication which effects, concentration, memory etc. Quite often your sleep is affected which then makes the issues worse. more negative thoughts and the process goes around again.

It is a very, very common problem. Being prescribed the medication isn't necessarily a bad thing but it has to support something else - some form of therapy which is suited to you. Whether it is stress relief, dealing with anxiety, loss etc.

I would try MIND whom are a great organisation and will have some services near you mind.org.uk/information-sup...

hope this helps

[cashcraft39 in reply to sospan]

I’m no doctor but my husbands neurologist stated something different than what you are saying. He said there are certain time periods after a brain injury where they do in fact see change where you may be doing great something might change years down the road. I would suggest finding a neurologist as we were told to have a yearly check up anyway before my husband had his second TBI.

[sospan in reply to cashcraft39]

As many people on the forum will verify, there are very few Neurologists whom have experience or Head injuries or more importantly indeed how to treat people with head injuries. In the 9 years since my injury I must have seen over 20 Neurologists and NeuroPsychiatrists through the NHS and medico legal cases. Probably only a couple showed any understanding over the types of head injury, symptoms and what to do post injury.

Now my wife, is having to go through the same, after having 5 major concussions in 3 years, She has all the classic HI symptoms but also lost most of her vision due to nerve damage and an MRI revealed a white spot her brain and a year on from the impact her head and face is still sensitive to touch. In a recent Neurological assessment the Doctor suggested all the symptoms weren't neurological but migraine .... Whilst this is in the bottom end of Neurological capability there are some very good ones but they are very hard to find.

It may be my writing style but what I wrote was that for a lot of people head injury symptoms aren't noticeable at the start, then rise up and peak e.g. they don't get any worse. Then the brain plasticity takes over and new pathways develop and we put in place our own coping mechanisms. These don't mean the symptoms aren't there they are just masked by the things we do

However, after a number of years, especially as we get older plasticity is much harder. Much when you get a cut or graze, young people heal much quicker than old people.

Whilst not knowing much of your husbands injury apart from what you have written, He is still in the early stages of his injury and assuming he is around the 40 mark has far better brain plasticity than I had when I had mine at 50.

Over the following year, you will see new symptoms and behaviour develop as some things heal, revealing issues than were previously hidden as he tries to do more. Typically most "survivors" see roller coaster of improvements for 3 to 4 years post injury. Then things level out with good days and bad.

One of the hardest things for the survivors to accept is that "this is it now" and are either in denial or keep on searching for the "cure". It is all about acceptance and time

[cashcraft39 in reply to sospan]

Thanks for clarifying. I guess we are one of the lucky as our neurologist is amazing and he does have what seems to be a bit of experience and understanding as well as the knowing of the struggles. He also referred us to his mental health therapist whom works first hand with Neuro patients that also is very knowledgeable. We went to many other therapists that were just in awe of what he was going through and found us spending a lot of time just answering questions about TBIs etc instead of getting therapy for it. Thanks for your input.

[sospan in reply to cashcraft39]

It could well be the difference between the US and UK. Good Neurologist over here are very rare

[cashcraft39 in reply to sospan]

I’m sorry to hear that. I know the facility we go to is amazing. It’s a huge university in Utah.

[sospan in reply to cashcraft39]

Oddly where we are in Wales in the UK, we have one of the worlds best brain scanning and research in the world. One of their scanners is one of two of the most powerful MRI ,medical scanners in the world (7T) - think the other one is in Yale (?). However, the centre just works on research not on diagnosing patients

cardiff.ac.uk/cardiff-unive...

[Painting-girl in reply to sospan]

I think it's finding one that specialises in brain injury is the key. My first one admitted he didn't and referred me to a neurologist that did specialise, when things weren't picking up. Number 2 then referred me to the brain injury team he worked with - this was all in London. I found the neuropsychiatrist and the neuropsychologist were both very beneficial, in terms of explaining what deficits were caused by the brain injury and how best to manage them.

[sospan in reply to Painting-girl]

The thing is that is what you want, if someone hasn't the specialism or ran out of options then there is no shame only credit in referring a patient to someone else.

When I asked some of the Neurologists I saw what there experience was, many would say Cerebral Palsy, Alzheimer's, Motor Neurone Disease etc. I remember one asking me about my sex life. When I mentioned it wasn't too good, I could see he was going down the psychological issues route, Until I asked him if he has ever had a hangover and feeling sea sick and then fancied sex ? He said "no, why would i?" when I explained that is what it is like at the time living with a head injury 24x7 , he was visibly shocked. He then started asking more interesting questions about how people live with a head injury and how it affects them.

It never ceases to surprise me how little Neurologist's know about head injuries. It isn't as though it is a new condition or little has been written about the subject.

[Painting-girl in reply to sospan]

There's remarkably little research on them too. I think it was that long standing schism in neurology on whether post concussion was all in the mind or not - probably didn't make it an ideal area to make your mark in...... and no supercures or treatment to find?

I think there's a bit more movement in recent years now they can identify physical problems with better technology, and the US military and sporting bodies are more concerned. Though I don't know how far they will really take it - the main concern with soldiers ( and sportsmen I suppose) is usually just getting them fit enough to function again ( sorry - late night cynicism!)

[sospan in reply to Painting-girl]

Part of the problem with PCS is that it overlaps with so many other symptoms especially depression. However, what rankles is that when somebody walks in with a clear and obvious head injury many doctors still go down the psychological route

[Painting-girl in reply to sospan]

Migraines do cause white spots on the scans though - my neurologist pointed out my 'spots' to me, apparently typical of a previous migraineur. And TBI does cause post traumatic migraine (mine were awful!)

[sospan in reply to Painting-girl]

Not according to this Neurologist !!!!

she dismissed the white spot as being irrelevant to my wife's symptoms. Indeed, the Neurologist dismissed the 5 concussion as being irrelevant and also the 5 Ophthalmic consultants who said my wife has neurological damage and the cardiac specialist - my wife is just suffering from migraine and wrote out a prescription for Migraleve and discharged her!

We should have know the Doctor was useless when after 10 minutes of the consultation she apologised as she had been looking at the wrong set of notes !

Honestly, there are more knowledgeable people on this forum ........

[Painting-girl in reply to sospan]

Ooh that wasn't helpful! I don't think my white spots were relevant - only that they indicated I'd had migraine in the past - which I knew. And a history of migraine makes you more susceptible to post concussion problems.

[sospan in reply to Painting-girl]

If the Neurologist had asked similar questions to yours, we would have been happy - have you suffered from headaches/migraines before or any previous neurologcial conditions etc.

Nope, you have migraine - maybe the Doctor read an article on migraine in a magazine just before

[Amber-11 in reply to sospan]

I hope you get a Dr who helps your wife soon. I had this problem but eventually got a migraine specialist who said he knows of people with tbi who have exertional migraines from the injury, I was so relieved, and I then I had a appt with a very good prof who wrote that as a direct causation and result of tbi I had migraines . So over 15 years I have had a mixture of helpful Dr and unhelpful it is a long story. I had no migriane and rarely had a v mild headache,and did not need painkilers before tbi . I wish I knew what is going on with my breathing which might be apnea it is day and night and not automatic breathing it feels like I stop breathing.. I also have poor temperature regulation I get hot with heating when others are in jumpers I am in a vest.

I would like to write down what someone, who played rugby, has been saying about his bi as it describes mine very well. Raised heart rate need to avoid lights I think he said on radio 4, and my fiend heard him on tv and said sounded just like my symptoms.

[Painting-girl in reply to sospan]

How worrying....