6 years on after mtbi abroad and only just accepting I’ve got PTSD and/or chronic PCS but difficulty getting help/diagnosis from GP

[TreesMTBI]

I had a nasty slip fall in summer 2017 while working abroad and had loss of consciousness and concussion. It wasn’t handled well by (U.K.) employers and looking back, I only received basic healthcare. In shock and unable to continue working, I just wanted to get as far away as possible and to forget all about my traumatic experience. My Dad travelled out to help me home. I didn’t go to doctors back in the UK and just tried to get on with my life - only, life was so hard. I couldn’t work, barely managing 3 months in a new contract of project management work I had done previous to my accident. I now found it overwhelming and exhausting. My parents then said they would support me to write as I’m writing novels, so I moved back in with them and for a while, this satisfied me. However, money became an issue as well as my lack of independence- along with a load of symptoms (body aches, bone deep fatigue, mental fatigue, anxiety, lack of social contact etc etc). I just dismissed them all as feeling low and lost in life. After a couple of years, I started some very light reception work for people I knew and as it was only for 4 hours at a time I could handle it. In the meantime I started to seek out therapies and treatments to help with my ‘depression’ and fatigue such as naturopathy and bioresonance as well as massage (I’m a holistic massage therapist myself- ironic that even then I didn’t accept the severity of what was going on even though I would have advised any client who presented with those symptoms to seek medical advice ).

GPs told me it was my ‘hormones’ due to my age (early 40s at the time). Instinctively I knew this wasn’t the whole story. Anyway by then the pandemic hit down, I was furloughed from my tiny little job and I just hunkered down like everyone else. By summer 2021, furlough had long stopped and my little job evaporated so I was left desperate for money (I feel so guilty as my pensioner parents continue to support me unconditionally). Anyway, September 2021 I started an admin job, something I could have done standing on my head pre-accident - part time, working for a ‘good’ employer so I thought everything would be fine. Wrong! Within a couple of months I became so ill- not Covid as GPs we’re convinced it was. Multiple lots of antibiotics did nothing and I had weeks off in my new job. It was part time, working 3 days out of 7 but even when I wasn’t ill I spent the other 4 days recovering/preparing to go back in again. It became hell, this job that should have been straightforward. I could not multitask or prioritise or plan. It came to a head after 6 months, when I was pulled off the persistent daily list of tasks we were supposed to complete, to help people plan how to drive home as our local area had been affected by serious flooding. I enjoyed the task, planning routes with online maps and my knowledge of local roads. However that night I had serious insomnia and had literally 1 hour of sleep. I was due back to work the next morning but called in to say I couldn’t make it in but would try to get in later to carry out important finance tasks. I explained what had happened and after a series of phone calls, I realised that the manager didn’t probably believe me and because of all my previous sick leave, the absence process would be triggered (I can’t even remember right now what it’s called, another lovely symptom of whatever is going on) . I resigned the next day. As a conscientious, hard working person, I felt so terrible and confused as to what was going on.

That was a year ago and since then after much research and therapies and a comment from a CranioSacral therapist who merely mentioned the word ‘trauma’, I find myself here.

I came a long way last year after 6 months of Somatic Experiencing and also coaching and by the end of 2022, felt loads better physically mentally emotionally. I started to pick up some extra volunteering activities and did some paid editing work. At the start of this year, I decided to start back massaging, just slowly with 1 or 2 clients.

However, I hit a crisis point in January, my cognitive functioning really gave me cause for concern as I tried to combine the little activities I had started to do. None of them major commitments in time or effort.

GP referred me to the ‘self-referral’ taking therapies service after I asked for referral to neuropsychologist- which she hasn’t heard of before. I also have another historical mtbi and tonic clonic epileptic seizures from when I was younger hence getting worried about cumulative effects. I have assessment with them on Monday but they have already indicated they probably can’t help.

Frustrated at the lack of real understanding from the GP about my concerns I’ve finally spoken with a neuropsychologist and am lined up to start work with them in late March/April. However, this is private, so it’s expensive.

I guess the point of my post is- does anyone have any advice on how to handle GP in terms of getting diagnosis or recognition, particularly as it’s been a few years since my accident and there isn’t a record on my NHS records. I feel like I’m banging my head against a brick wall. Oh- just realised what I wrote.. I banged my head on a metal sink and a tile floor, but still, this almost feels as bad.

Also does anyone else feel isolated, like no one gets you, why it’s so hard to tidy up or get anything done or why you don’t feel like going anywhere or doing anything but some days you do and life feels ‘normal’ and you appear ‘normal’ ??

The lack of independence is so hard too.

Anyway, thank you if you have managed to read all the way down here. Any advice or encouragement gratefully received, thank you.

Love, light and healing to everyone.

[paxo05]

Hi there, that took some reading ( not a complaint or criticism) just had to take it in chunks ( my problem).Feeling isolated ohhhh yes. Close family get me but feel I constantly am apologising to others.

As for gp's I feel u was lucky. My gp knew something was wrong post rta but not what. He's the sort that if in doubt pass to a specialist. It took several " specialists" to realise the extent of my bi.

It was still a struggle but after about 3 or 4 years I found I was on the right track. Lucky for me I had a claim that covered my medical bills. I ended up having to go private due to missing the cut off time for NHS treatment of 1 year post accident.

It's coming up to 24 years post bi and it's only the last 10 I have come to terms with all it entails.

I tried writing about my experience but manage to destroy my notes as I went along typing them on my Lap top, then manage to break said lap top.

Oh one day I WILL rewrite them.

I hope you get to come to terms with the changes in yourself and get the help you deserve.

Pax

[TreesMTBI in reply to paxo05]

Hi Pax, first off, thanks much for your kind wishes - and for reading my (very long!) post. I just saw how long it was, as looking on the computer screen. I wrote it on my phone. I'm glad you had a proactive GP who got you help even if it took several avenues to get there. After getting a few other lovely replies as well as yours as the first reply, I feel much less alone. I have also realised that I'm only at the start of this part of the journey. But I'm feeling a bit more hopeful for the future. And yes, why not try writing again? It's definitely of importance so that others out there can understand a bit more of this invisible affliction that affects so many of us. I would like to share my experiences one day, once I get my head around it all! Maybe we need a 'healthunlocked' anthology from mtbi survivors!

Take care.

Trees

[Charente]

we had tbi due to bike accident in Spain and hospitalisation in Spain and France for some months. We had medical notes in two languages from care and discharge which we were able to translate by an approved translator to be put on our NHS notes and these were accepted.

Are you able to access your old notes whatever language ?

[TreesMTBI in reply to Charente]

Hi Charente

Thank you so much for your reply and sorry to hear about your accident, sounds awful for you and to be hospitalised away from home for so long. I have managed to find my xrays that I was given and a sick note (that I never gave my employer as I left soon after - so glad I still have it!). Both have my name, date and hospital name on. I'm getting the note roughly translated for now as actually don't know what it says - thanks to your suggestion, I hadn't thought of that - and will get it translated officially at a later date. Apparently I was seen by a neurologist so I hope the note mentions concussion or head injury or something useful! I wasn't given any other notes but I was treated as an EHIC casualty, so I'm trying to figure out who would have records via an EHIC case (as was, pre-Brexit, GHIC now), as there must be a record somewhere as part of the reciprocal agreement, so that the hospital would get paid for it. They were very keen to get my EHIC card details at the time. I don't speak the language otherwise would call the hospital. Short of asking my friend who lives in the country, to travel there, I have to think of how to get around that. The NHS Business Services Authority look after applications for GHIC, so I may try and call them and see where that leads.

Many thanks again Charente and best wishes for your future health.

[Charente in reply to TreesMTBI]

Thankyou for your good wishes and yes as well as the repatriation involving 2 countries , 4 hospitals ( looking for a suitable bed,) 3 languages , Liaison between NeurologyHospitals and medical care teams who spoke different languages and finding ambulance transport over 1000 miles, a specialist nurse and double ambulance crew, it was also Easter Holidays in 2 religious countries. ( lot of Bank Holidays when NOTHING happens but bed states keep changing) it was a logistical, bureaucratic documentational and medical nightmare , collecting up notes from 2 countries in 2 languages and summarising and getting them translated was quite a challenge. I agree if you can use any other route it has to be easier. We were always given the full notes to accompany us. We were given the scans, x rays , notes , diagnosis, their intervention , recommended future treatment etc..the lot . Damn good care to be honest and we will always be grateful and humbled by the kindness and respect with which total foreigners and strangers were treated .

By the way it’s not their custom in either of those countries to store Patient Records. The patient is responsible for all records / notes and you are given them after each discharge and have to take them all back to every OPD intervention in the correct order.( and although we spoke the language it’s not your mother tongue and medical terms were difficult) We had so many A4 files.

However, through the financial reimbursement via EHIC , they must have invoiced you in detail for treatment , care ,scans, ICU care etc. It’s usually quite financially detailed for almost every intervention and in our case was copied to us and insurers . Possibly you can get a breakdown of your health pathway this way from your travel insurers or EHIC records. So complicated I hope you have some luck.

Very good wishes for the future and never give up.

Charente xxx

[TreesMTBI in reply to Charente]

Hi Charente, I hope you are well?

Please can you tell me how you got hold of an NHS-approved translator? I've had a bit of distressing news - a friend translated the note I had thought was just a sicknote signing me off work - it was/is actually a note from the doctor I saw saying I needed CT/MRI of my skull, neck, spine and a full orthopedic exam, as the hospital I attended didn't have the required machines, all of which never happened because I didn't know the note said all of this - and because I left my job/workplace and came back to the UK, I didn't even think to show the note to anyone - until now. What a web we weave... But at least, this means I have a very strong case with the GP now, to get neuropsychologist and MRI referrals...

Thanks for your help.

Trees

[Leaf100]

Hi Trees.

First off I would give Headway a call and ask for advice.

In my own case, I found my original gp useless, I did not get the correct diagnosis

until I saw a neuropsychiatrist. A neuropsychologist can do some testing for you,

but because they are not a doctor, they don't have the same clout in making a diagnosis,

and you need the clout of an actual doctor in terms of getting access to types of help,

and more importantly, disability benefits.

As you appear to have figured out the hard way - getting a job and keeping it,

in your current state, is not practical. And, you need money to live on,

and access to therapy.

You also need someone to assess where you are on the spectrum and to

help you determine what sorts of jobs you may be able to do - if any.

Working is one of the biggest challenges people with mtbi's face.

You need a realistic picture, and a realistic way of keeping yourself, without

always having to rely on your parents.

There are tons of expensive therapies out there, but without a realistic assessment

and some guidelines, you can put a lot of money down that rabbit hole and not have a lot

to show for it.

There also may be back to work programs of various kinds you may be eligible for, once

determined you are at an appropriate level.

You need realistic information.

We all chase the 'something will fix this and I will find it' rainbow for various lengths of time,

and then a lot of us have to cope with the fact that nothing is going to fix it - we have

to build a life based on where we are, and yes, some progress can be made, but our

old ways of living are just not accessible any more.

What you have described is exactly how it is for many of us.

The isolation, the days you what you do matches where your brain is at and you feel normal -

except for maybe the energy crash that follows, the isolation as you just can't keep up,

desparately trying to find a job you can maintain, meeting medical people who really don't

quite get it - or those who promise to fix us and they can't... and a lot more...

Keep us posted.

Leaf

[TreesMTBI in reply to Leaf100]

Hi Leaf, thanks so much for your straightforward reply which I found so helpful. You have described my current problem to a T - trying to access the right information from the right people in the right way to get the right diagnosis and right treatment and financial help - while going around the houses quite a bit. And I so hear you about the rabbit hole. Yikes. I really appreciate your comment about neuropsychologists, as I've actually had reservations about the costs involved, as has a counsellor/psychologist friend. I'll check out neuro-psychiatry. Thanks again.

Wishing you the best future health.

[TreesMTBI in reply to Leaf100]

Also, Leaf, I forgot to say thanks for your first point about Headway. I'll speak to them first thing Monday morning.... 👍

[Letsrock]

Ohh, feel for you as yes I am getting the same using age as excuse with GP not knowing anything about concussion even when you give them headway notes fir Gp they say they know nothing about any of this and do not offer any services to help or referrals. They then complain when you loose it and say you are not listening.

I have had it worse in the last 3 months due to employer and am now signed off dick fir 2 months but had to phone the NHS mental health services , (111 then mental health) who were very good and also spoke to the doctors and got me an appointment and 6 sessions of somebody to talk to with meditation, music and exercises. They have now finished and due to my health, heart getting sore I have had to phone my private health insurance to speed things up as the NHS taking too long as have not even seen a neurologist.

Hang in there and stay positive and give the NHS mental services a try as it somebody to talk too and they will help a wee bit.

Don't want to sound patronising but epilepsy is pretty much electrical waves firing around brain crossing over do meditation as very good which is pretty much the same as brain injury they say you will recover in time as long as no stress and take things at a very slow pace and switch off at night.

This all sounds too easy and simple but it us not and very frustrating when you want your life back and just domebody nedically to understand you ax they all say nobody us alone.

Happy music, meditation and sliw exercises as well as puzzles and jigsaws to keep brain active, the mist important part and a very slow pace. I must practice that myself 😃 take care.

[Letsrock in reply to Letsrock]

Sorry about spelling figures getting fatter with no exercise and eyesight deteriating and predicted text.

[TreesMTBI in reply to Letsrock]

Hi Letsrock, oh I'm sorry to hear you're having a particularly bad spell at the moment due to employers. Most people just don't understand because they can't physically see the problem even if your behaviour or work is affected. I've had people suggest over the years that I ought to just get on with it.... ha! If only I could?! Fingers crossed you get to see a neurologist soon and get some answers.

Your reply made me realise that the NHS mental health services is actually a blessing, as I don't have anything right now and I really need to offload. I'm already a regular yoga and meditation person which may have been helping to keep things at bay but interestingly, when I get bad, when energy levels drop, I tend to stop yoga-ing and meditation goes out the window, when I need them most! Your message is a timely reminder to gently push myself to keep up with this no matter how little I can manage. And yes, happy music!! I need more of this in my life! Thanks again for the reminder.

Regarding puzzles - this is one thing interestingly that I have done a fair bit of over the past 5 years. My dad's newspaper has 4 pages of puzzles every day and sometimes, even when I don't feel like doing anything else, I have found myself almost obsessively doing the puzzles and nothing else. It's like my mind knows it will do my brain good. Jigsaws...I'll start one today. But all at a slow pace, yes!

Take care Letsrock and I wish you well. Thanks again.

[Letsrock in reply to TreesMTBI]

Lots of people to listenBreathing space 0800 83 85 87

Samaritans 116 123

[Painting-girl]

Hello Trees, welcome to the forum. Sorry to hear about the problems you've been having, and, as you've probably already gathered, what you're experiencing is actually pretty 'normal' around here. It sounds pretty classic for so-called 'mild' traumatic brain injury. The thing to bear in mind is that 'mild' just refers to it not being life-threatening, and not to the scale of the random brain injury effects that kick in. Yes, some people can recover from a concussion pretty quickly, in weeks or months, but unfortunately some people do not shake off the various memory, organisation, and fatigue problems that are triggered, although you can learn to mitigate these.So although the way medicine has developed, means that neuropsychiatrists and neuropsychologists are the 'go to' people to get help from, this is not because it is a depression or mental problem (although be aware we can be a bit vulnerable to those too, either as a direct result of the injury or from having to deal with the consequences of a brain injury, which you describe so well) it will be helpful for you to think of this as a physical set of problems caused by a traumatic brain injury. Basically some of the things that go wrong, are connected to your vestibular, oculomotor, and autonomic nervous systems ( making exercise difficult) plus possibly, issues with the nerves in your neck at the base of your skull. Don't rule out antidepressants though, as depression can recur and add to the effects of your brain injury, making it harder to deal with.

As Leaf says, do talk to the Headway helpline ( in office hours) it helps enormously to talk to someone who 'gets' it.

A neuropsychologist can run a set of cognitive tests on you and produce a written report, plus help coach you to handle fatigue and develope helpful strategies to cope - you need someone you get on with who will still be able to challenge you constructively.

It's great that you meditate ( though personally I need to avoid anything involving visualisation since my accident - it's really hard to do now!) Try and use the meditation as a 'brain break' either in short bursts of five to ten minutes every hour, or for half an hour in the morning and afternoon - it's best to do it before you feel tired. I find the nidra yoga / mindfulness body scans most helpful for this.

For some more insight, try reading 'The ghost in my brain' by Clark Elliott (he also does some YouTube stuff, which I haven't watched yet so can't vouch for) also 'Mindfulness and stroke - a personal account of managing brain injury' by Jody Mardula and Caroline Vaughan - terrific book written by Mardula and her neuropsychologist - the first part is a personal diary, but with clear practical stuff in the second section from Vaughan.

Another long post! I have trouble being succinct these days...

Hope you can get some support x

[TreesMTBI in reply to Painting-girl]

Hi Painting Girl, first off, I ALWAYS have trouble being succinct (I am a writer after all...) so don't worry about long posts around me, because chances are this will turn into a long post too

Thanks for your reply- it's all so reassuring to know I am not alone here! I have noted all of your tips and recommendations. Yes, I love yoga nidra too! I am trying to stop feeling guilty when I go off in the middle of the day to lie down and take a yogic sleep! And I like the idea of using meditation as a brain break. I'm going to try and incorporate more, shorter meditative moments into my day as you suggest. This condition is making me truly learn that we are not 'human doings' - we really are 'human beings'!

I was very interested to hear about the Clark Elliott book/YouTube so will definitely take a look (I've heard/seen that name a few times on here so must be worth a look....).

Things have progressed here just in a few days since I posted. I called Headway and the consultant was brilliant, so I feel confident now that I will at least get a referral to a neuropsychologist (I already have one lined up privately but the cost of going private makes my head spin). I'm on target to meet with the GP next week and actually face to face! I'll only have 7 minutes, as they don't do 'double' time appointments, so I have to write a case history and send that ahead of the appointment so that the doctor can prepare.I am exhausted from trying to write that and after the past 24 hours with the Headway consultation and also an initial mental health assessment, so will be glad to get to the GP and get some traction somehow.

Anyway, enough rambling from me!

I just had a quick look at your profile - I'm sorry to read about your accident - and no, it is not trivial at all what happened to you! You deserve just as much care and consideration as the next person with brain injury. Be kind to yourself and wishing you the best health possible in the future.

Take care and thanks again Painting Girl!

Trees

[Painting-girl in reply to TreesMTBI]

Glad you have an appointment, and that Headway helped 👍 Prepping for appointments is exhausting. Have you got anyone who can help you get your notes for the GP down to be a list of bullet points? Even with the neurologist I used to get help to do this before appointments - because it also helps to talk someone through what's most important to you. I needed to take someone in with me ideally, and I used to give all three of us the printed out bullet points ( so we were all on the same page...) I think the amount of help you can get varies from area to area. My neuropsychologist was private but helped me enormously with fatigue management. She worked for the local trust in brain injury rehab.

Thanks for your kind words!

[Astley10]

Alot of GPS don't understand brain injury 😕 I was lucky to get put in a specialist brain injury unit after my fall by my Gp who was a very nice man he understood, that was 14 years ago this September ,only reason my GP got me a placement was I kept running away from the hospital 🏥 waiting to go to a rehabilitation unit as with brain 🧠 injury u think there's nothing wrong with u and the only way they could keep me in was section me that my pare parents dint want to do a wish they had because it was a nightmare for them left to deal with me on there own anyway eventually the GP got me to go and I will be forever thankful for that ❤️.but nowadays all these new young GPS don't understand brain injuries I'm 14 years post accident and still have daily problems. Anyway a was just trying to say ask your GP for an mri of your brain 🧠 it will show there's been an injury that will be difficult getting them to send you , if not do it privately its usually costs between 3 and 500 pounds for an mri bit the clinic u ask to do it will need access to your medical records which might prompt your GP to send u thereselfs thru the nhs .hope this help.All the best

[TreesMTBI in reply to Astley10]

Hi Astley10, thanks so much for replying, it definitely helps. I'm sorry for all you - and your parents - went through but so glad your GP was on the case as much as he was, and obviously cared 💜

I called GPs today and have a face to face appointment next week. I spoke to Headway yesterday who have prepared me well, and then later in the day, my friend translated what I had thought (for nearly 6 years!) was a sicknote signing me off from work was actually the doctor at the hospital saying I needed CT/MRI of my head, neck, spine, as that hospital didn't have machines there, only x-ray. So, alongside of the past 5.5 years of symptoms and not being able to work and now this note, I think I have strong evidence to get neuropsychologist and MRI referrals. Here's hoping!

Take care of yourself and best wishes for your future health.

[Astley10]

U definitely seem to have the problems (symptoms)like all of us on here have post injury. damage to the part of the brain 🧠 never heals it finds other pathways around it as a said people and some Dr's don't understand brain injury. Good luck getting an mri if they won't send you do it privately it will show damage to the specific point fore sure coz I have been for other scans and mris years later for other injuries ma spine and I asked the Dr if u can see my head injury and he said yes .All the best mate take care