Pre Brain Injury problems.: After a couple of years... - Headway

Headway

8,470 members10,910 posts

Pre Brain Injury problems.

Glenquoich profile image
Glenquoich

After a couple of years of long awaited Psychology and Psychiatric therapy where my long standing Brain Injury is being taken into account, both my Clinical Psychologist and Psychiatrist are of the opinion that I had a pre existing neuro diverse condition before the TBI happened. It may even have led to me falling into the trench that caused the Brain Injury.

My Psychiatrist is assessing me for ADHD and my Clinical Psychologist is suggesting it's Dyspraxia (I don't know if you're allowed both). I've just gone through screening for both and I'm being put forward for assessments in both. ASD was ruled out in 2017, in fact, that's when they spotted the long term Brain Injury problems. I had a 'later in life' Dyslexia diagnosis in 2015 and now wear Irlen lenses.

I'm having them done privately because adult diagnoses waiting lists on the NHS is measured in years and after waiting decades for confirmation of my post TBI condition to be recognised, I just want these tests done in order that I can work out what I'm dealing with and get on the business of rebuilding my life with what little time I have left before old age brings its own bag of sweets.

Has anyone got any experience of this situation (having a Brain Injury AND a neuro diversity) and possibly give me any advice on what to look out for while I'm going through these assessments.

21 Replies

Sorry Glenquoich I've no experience of your issues but just wanted to say best wishes in getting answers after SO long without any !

Keep us updated..... Cat x

Hi Glenquoich.

I don't have any advice as such, but you're not alone. Currently on the waiting list for ASD assessment, but I have hallmarks of ADHD, as well as hydrocephalus. Which symptoms are due to the hydrocephalus, and what's the maybe-ASD? My hydrocephalus was from birth, so it's a difficult one to tease out!

I'm trying different coping techniques and seeing what works for me, regardless of whether I have one particular diagnosis or not. Regardless of having a diagnosis, you deserve to have a good quality of life!

Glenquoich profile image
Glenquoich in reply to Owl51

Thanks, it took decades of mental health problems before a very good psychiatrist suspected an organic problem. He thought it was ASD (as if the Brain Injury wasn't obvious enough) but during the day long ASD assessment they realised that some of my behaviour looked like ASD but some didn't. They recommended a Brain Injury assessment and it was confirmed.

Now they're realising there's been a pre-existing condition.

I suppose a diagnosis is no more than a label but at least I'll be able to understand what I'm dealing with and make the necessary adjustments.

I think having the label helps some of my family (wife and children) understand when it's there in black and white. As for other family members, I'd prefer to stay on this forum, so I won't express my two word sentiment that describes how I fell. Lets just say the second word is "them". They would have to reconcile with themselves they've been wrong about me for a long time and I've found that the hardest thing anyone who remains unteachable, admitting they're wrong about something is an impossible task.

Hi Glenquoich,

Apparently I probably had a degree of dyspraxia that I'd managed ok before my TBI without a formal diagnosis. I'd actually suspected it since attending a training seminar on dyspraxia in school-age children, but not done anything about it. I hadn't ever really questioned why my sister could do stuff I couldn't or found hard - tennis comes to mind. My parents commented from time to time that I'd been oxygen deprived at birth - but I was very good academically, so there wasn't any question of any interventions at school.

My son ( in his 30s now) seems to have quite a few of the traits as well. We seem to have general clumsiness, and walk into things occasionally, but our fine motor control is surprisingly ok - though we both have pretty awful handwriting - and a dearth of navigation skills between us (Google Maps changed my life, I kid you not... 😊) We've both done well academically, and in work, so not exactly problematic generally - except in our inability to do school sports. We would both use the gym, and he cycles and runs now though.

I've always had some trouble managing time, but not in a way that's stopped me taking exams and managing a workload.

Whether it had a bearing or not I don't know, but we're both fairly math/logic/ programming biased people cognition wise. But my daughter in law was pretty sure that we did both tick a fair number of dyspraxia boxes well before my TBI.

My dyspraxia-like tendencies felt like they got worse after the TBI, but it's difficult to split any of it out precisely - I can remember explaining this to my sister about a month before the neuropsychology assessment - it was as if it was something that I'd just managed before, and didn't particularly affect my performance, but now did somehow.

This effect was confirmed by both the neuropsychologists I've seen, both on the basis of the testing neuropsych no.1 had done, and then no.2 also said that this was a pretty normal effect for that sort of tendency to worsen after a TBI. Sorry, I've forgotten the exact rationale she gave me!

This is rather a long explanation, but I hope you can glean something from it? I was very shocked by seeing it come up formally on the assessment at the time, but I don't think it has any bearing on me now, except as part of generally managing myself post TBI being a long exercise in notepads, reminders and alarms - and needing to write down travel plans in great length and detail - even when getting local buses - and Google Maps.as well... (and being more careful when being clumsy not to bang my head) . But I'm not sure how that can be split out from the general impact of a BI though?

I have read that ADHD can make it more likely that someone will suffer worse consequences from a MTBI, by the way.

It seems really awful that you had so many years of coping before getting to this point. I had to wait six months for the neuropsychology tests, and then some four months or so after that to get in front of people that didn't think my symptoms were at all unusual, and were down to the TBI ( they assessed me between mild and moderate on the Mayo scale). But the time to that point from the injury was absolutely awful. Wish I'd found this forum sooner 😊 could have saved myself some grief...

Not sure there's anything to look out for when doing assessments - just try to do everything as well as you can, and see what the medics spot?

Hope it goes okay anyway 🌸

Glenquioch wrote " I just want these tests done in order that I can work out what I'm dealing with and get on the business of rebuilding my life ".

I can relate to that line and sentiment. You don't know what you don't know. Until I got a test having someone look at all areas of processing, speech, balance, reflex, etc etc , it didn't occur to me that certain abilities were different or not there. I had an assessment and it turned out my language processing speed and mathematics were in the lower percentiles. Once you see it in written in black and white, you formulate a plan to fix it. Speaking of which, it was the black and white text which danced all over the page, so I was given a pink Meares-Irlen see through text layover which stopped the text from moving. Really helpful with using a computer as when working in Microsoft Word, I changed the background to pink. Such a simple thing meant I was able to focus for long hours on a computer.

I started using Lumosity website to increase my speed processing and mathematics. From April (first % score below) to December of the same year (second % score) I used it daily and continued for a few years after. Here is the change I obtained in the first year. What I particularly liked was every time you log in, it asks you how you feel and if you slept well. I found that a really useful check in with self, which taught me to ask myself these questions while not using the program. Once you ask, you can adjust, correct, mitigate or plan to resolve. If you don't ask, you simply wander aimlessly hoping the day gets better or not.

Speed went from 6% to 75%

Memory went from 65% to 84%

Attention went from 13% to 83%

Flexibility went from 22% to 82%

Problem solving went from 51% to 77%

This memory above is working memory or short term memory. I still had blank areas of my life that I couldn't remember but I believe doing these daily exercises helped me regain that.

I am happy for you that you have taken the large step to get the tests done. It will amplify your confidence, your self knowledge and bring a renewed intention to each day with a feeling of being more in control and more in relationship with your body.

Best wishes

I used a blue Meares-Irlen overlay for a couple of years then went for the colouremetry test and ended up with orange-rose lenses. I tend to wear them all the time because they seem to help focus and reduce visual overwhelm, especially when I'm around people; which is rare theses days because I've moved to a fairly remote location now.

I had a full post TBI visual assessment at one of the Universities in Glasgow last year and the Optometry Professor concluded that my 'seeing apparatus' was fine but the time to process visual information was slow. It made complete sense to me.

Thanks.

My Clinical Psychologist always tells me that a Brain Injury makes you more like yourself; I think he's alluding to all my traits and foibles seem amplified, so your experience rings true.

My son has an ADHD assessment this Thursday, he's 24 and we've been noticing these traits since he was a school. We pushed the school for an assessment but by the time his name came up he had already left. He initiated this assessment off his own back this time.

It can be quite funny to observe when my son and I are having a conversation, I just look like an exaggerated version of him. We frequently tune out at the same time and forget what we were talking about. It's like watching a couple of stoners talking without the drugs.

I found this forum a couple of weeks ago, I never use social media but this has been immensely helpful. Now I don't feel as marginalised and alone living with this condition.

Love the description of you and your son mutually tuning out - reminds me of the slightly crestfallen looks my son and I exchange when ny daughter in law mentions something we do the same 😊

Glad you feel better for finding this forum - it was the same for me - huge relief to recognise other people having similar issues, on all sorts of fronts.

How did you get your colourmetry test? I've been doing eye and head exercises to reduce the impact of busy spaces like shops - there's variations on the same theme, but basically have to move my head from side to side, and up and down till I feel nauseous... Doesn't tackle noise of course, but it did make it easier to scan shelves for example without wanting to leave by the nearest exit.

I got my colorimetry test through an optometrists rather than a general opticians. I just googled "visual stress test" I think and it told me about the intuitive colorimetry machine and I found a high street specs shop that carried out the test, Black and Lizars in Glasgow. The test was around £50. The lenses are expensive and I think when my prescription changes I might see if I can get a clip on next time. I wish the technology was around in my early post TBI days, I had to make do with photochromic sunglasses back then that would go really dark at random times.

There's a woman on YouTube "Brain Injury Coach" who goes into the finer detail of Behavioural Optometry, and there are some eye exercises in there that I've found helpful.

Thank you, I'll have a look 👍

Hi there- my daughter had her ABI 3 years ago and we suspect she has Asperghers. May I ask where your psychiatrist is or how you got to have a good one? We have shockingly bad and unpleasant experiences with psychiatrists so I want to be super careful who I introduce into my daughter’s life!

Thanks !

Glenquoich profile image
Glenquoich in reply to Phoenix68

Hi, I'm not sure we are able to name any doctors on the forum. I got to see my Psychiatrist through the Priory hospital in Glasgow. She has limited knowledge in Brain Injury but is good enough to correspond with my Clinical Psychologist ( private sector)who has plenty experience in this field. I'm currently fighting tooth and nail for a Neuro Psychiatrist because my Clinical Psychologist has told me in the long term that would be more appropriate. The reason I'm having to fight tooth and nail is that there are no Neuro Psychiatrist in the private sector and NHS Scotland seem to be blocking my access to one by stating that too many years have elapsed (36) between my TBI and now. My MP and MSP are currently fighting this case. To go private I would have to see a Neuro Psychiatrist in England plus we have already had to re-mortgage and use up my wife's health insurance to cover our private sector healthcare costs.

My experience with Psychiatrists has been nothing short of a nightmare since I first saw one in 1993. At every juncture I had asked them if my mental health difficulties were related to my TBI (an Extradural Haematoma requiring a craniotomy) and at every juncture I was told NO, followed by (mis)diagnoses from OCD, GAD, depression(who wouldn't be?). and psychosis.

It wasn't until I went back into the Glasgow Priory in 2016 (for the third time) following another breakdown that the Psychiatrist suspected a organic component to my decades long mental health problems. He suspected ASD and I was put on a list until March 2017. It was only at this assessment that the Head Psychologist at Autism Scotland made the connection between my TBI and my problems. He thought it was very obvious. This was the first time I ever had any meaningful recognition of my post TBI condition in 33 years. I later that summer had the post TBI issues confirmed by the Clinical Psychologist who I now see.

The Psychiatrist I now see at the Glasgow Priory took over my case in 2018 when my previous one retired. She has been good enough to admit she has limited knowledge with Brain Injury and has sought advice when needed.

So in the main my experience with Psychiatrists has been, at best, damaging.

Phoenix68 profile image
Phoenix68 in reply to Glenquoich

Thank you Glenquoich that is very helpful. Our experience with psychiatrists has also been damaging but it is useful to know that the Priory might be able to help. I will contact them and see if we get any inroads from there. We live in Derbyshire so our nearest Priory is in Nottingham. I also noted that there is someone that might be able to help in Spire. Thank you again and I sincerely wish you all the best, hopefully you will be able to have a more targeted treatment (and more understanding from your loved ones) now you have a diagnosis that you feel is appropriate.

Glenquoich profile image
Glenquoich in reply to Phoenix68

There are some Priory and Spire Psychiatrists who have Brain Injury as one of their specialisms. Unfortunately for me there are none north of the border..

They'll be listed on the website.

There are quite a few Neuro Psychiatrists who operate privately in England that my wife has found out about.

All the Scottish ones work strictly for the NHS which is why we're having to fight the bureaucrats to get access to one.

Morning! 😊

Remembered something else re ADHD. It was described to me (not by a medic)

as affecting ' the speed that messages get through the brain,' So that unless you were excited and engaged on activity, the 'messages' wouldn't get where they needed to, and your attention levels drop - tricky for school children.

I'm speculating that there's a connection between the effects of ADHD and brain injury? I've since read there's a connection with dopamine in the brain with ADHD. My psychologist places a lot of emphasis on doing activities I enjoy, rather than just the day to day chores - and I can maintain focus on my granddaughter for longer than other activities for example, even though I'll pay for it afterwards in increased fatigue (worth it!) Plus Ritalin seems to be used in the States sometimes to manage the fatigue from brain injury.

Will be interesting to hear what you find out 🌸

There's a great book on ADHD by Dr Gabor Mate called "Scattered Minds". I learned about him through his books on addiction recovery. He himself was not diagnosed with ADHD until his 60s; so also was Billy Connolly.

I'll have a look thanks. I've read that though ADHD is a disadvantage for school children, that it's not unusual for successful adults to have it. Plus the tendency for acting on impulse was actually a useful survival strategy originally. I'll be curious to read a bit more about it.

A lot of people with a TBI find pre injury traits are exacerbated.

And with fatigue levels, even more so.

If everyone had all the psychological assessments and tests, I sure they would all fall into some type of categories that they where not aware of.

But if this knowledge can help with achieving a better quality of life, it’s very powerful.

I think the neuro knowledge of TBI is more useful than the non-neuro psychology.

A TBI is life changing, yet it’s frustrating if someone tells you “but you were like that before!”

Please keep us posted, it’s very interesting.

Glenquoich profile image
Glenquoich in reply to Plenty

Thanks, I never knew fatigue before my TBI. Now it's my almost daily companion and on the rare occasion that it's absent, it lurks in the back of my mind ready to assassinate my day.

"I think the neuro knowledge of TBI is more useful than the non-neuro psychology."

I agree wholeheartedly with this; if only I had known in the intervening decades about the neuro aspects of my post TBI condition, then in the more than 100s of hours sitting in front of Psychiatrists, Psychologists and Therapists would not have led me to feeling so wrong and feckless.

I'm sure, at the very least, my own self esteem would have been much better.

If the only things I gain from these assessments are an increase in my own self worth and an understanding from wife of my condition in order that she becomes less adversarial then it will be well worth it.

I'll be sure to keep everyone posted, this forum has been the most positive addition to my life in some time.

Plenty profile image
Plenty in reply to Glenquoich

But is it possible that the TBI has caused the ADHD symptoms?

Glenquoich profile image
Glenquoich in reply to Plenty

I suppose it could, the easily distracted part, poor concentration etc have all got worse post-TBI for me. However, after a few years in front of the Psychiatrist and talking about my early life pre-TBI. she thinks ADHD was pre-existing.

We completed the screening questions, one had to be done by my mother and we dug out the school reports my mother had been hoarding since the early 1970s. In hindsight it all seems to point towards ADHD symptoms prior to my accident. I've been told there's an overlap between ADHD and Dyspraxia and my Clinical Psychologist thinks for the same reasons as the Psychiatrist that it's Dyspraxia. I don't know if you can have both, it would be very greedy of me to have both AND the 'gift' of the TBI (only joking).

Either way, it's looking like I had problems neuro-wise before my TBI and to quote Spinal Tap the TBI has turned them up to 11.

I should find out in the next couple of months. I spoke to an Occupational Therapist who specialises in Dyspraxia diagnosis this week, she thinks it's worth further investigation by what I told her and would like a report from the Clinical Psychologist before going ahead with the assessment. It's expensive but I'd rather be skint and know either way than stuck in limbo wondering.

As long as I get to the point of accepting whatever happens and while these diagnoses and the TBI might describe me, I can't let them define me. I can get on with the business of rebuilding my life with what I have.

I had to do the same with the addiction problems I fell into with self medicating nearly a decade ago.

I've got grandchildren now who think of me as some kind of windswept and interesting, random adult. Making them laugh is my favourite pastime. I might not have fulfilled my potential in the adult world but I've still got plenty to be grateful for.

Although I do have my 'dark nights of the soul' if I live in the past too much.

You may also like...