I'm just interested because from experience it seemed the lack of services from the NHS and the persecution from the legal and DWP systems were the things that had more of a negative effect for me.
What causes depression after BI: is it the BI or t... - Headway
What causes depression after BI: is it the BI or the sheer sense of hopelessness when you realize there is no realistic rehab on the NHS?
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pinkvision
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I think it was for me the damage caused by the accident front of the brain damaged plus the right side damaged. That changed everything poor concentration fatigue headaches the first few years were terrible. Then the depression started as my life wasn’t the same I wasn’t the same. The help I got was this…
I was given tests after about 8 months to a year at (SCBIRT) Sheffield community brain injury rehabilitation team. I also got really angry quickly. They asked me to cook a meal I had to buy ingredients and then cook I got so mad why are they asking me to do this I’m not stupid!!! Other cognitive tests were done I wasn’t really told the results. Now looking back it was just tests to see what help if any I needed. I think I’m lucky that I can and do function fairly normally now but the depression never that far away. That’s where the problem was I was referred to the local doctor and they started me on the road of anti depressants. I have learnt that some are different I don’t like ssri which seems to be the main one. Flattens my mood feel have no emotion feel dead after 6 months of taking them. Mirtazapine help me sleep suited me better but became ineffective after a year back to no sleep. I think the rehabilitation team would have helped if it was physical or memory things they could show me how to learn to deal with but how can they change the damaged brain and mood give back what was taken away?
My way of dealing with this has been drink drugs in the past but it makes you feel 10 times worse eventually and that is certainly not the answer but short term you feel great. Block it out when your not able to see another way.
I have also recently been back to the doctors more antidepressants as I couldn’t sleep felt really low. I was also given iapt talking therapy which was like a joke. When I said I had a head injury been doing this for 22 years and done iapt before. She asked if I had heard of headway so like always pass the book move you to someone else or tablets. Tablets in the bin and back to my way of coping with it…
I started running after the tablets not working 2012.
So that’s where im back running and going swimming after feel different normal no depression. So the magic pill exercise swim in a morning run most days each week. Grow a few sunflowers. Add yoga be mindful works for me change your thought process.
I think the brain is so complex it’s not just one thing like injury that’s can have caused the problem. Different areas of the brain affected giving multitude of difficulties. A tablet to dull the effects of the problem that’s how I see antidepressants a plaster to cover not a solution.
So how do you think the NHS should treat people with depression as i will be going back probably more tablets when the cycle starts again or just keep running!!!
ATB
CW2002. 🌻
Sounds to me that you have found the answer, keep running and doing yoga. You may want to try MBSR (mindfulness-based stress reduction) it's quite body orientated and helps you put life into perspective.
Thanks for your response because it shows some antidepressants are useful for a period of time but from your answer it is also clear that if more constructive realistic rehab options are available it may prevent long term depressive episodes.
I found having a mission in life and goals helped me avoid negative events. I never got depression and did not take any medication except for gastric issues.
Yes I would like try that anything in the locker that’s great, I do think that perspective helps I do realize that I’m so lucky and have a great life. So million dollar question why get depressed on a recurring loop? Fortune thing now is I do have some strategies to help and like now feel ok. Thanks for your response and would be grateful of the MBSR.
That's what depression is, a recurring loop of thoughts triggered by emotional responses to life events. You can break that cycle very easily by concentrating on other things. MBSR would teach you how to do this, what it does is train you to concentrate on the sensory system in your body, then when a depression trigger comes into your life the brain would have the capacity to help avoid the trigger by concentrating on something else. It takes about eight weeks to train it in, get the basic hardwiring set up, then if you keep practicing the hardwiring gets stronger and when a trigger comes you will know what to do.
Here's a load of audio recordings for the components of MBSR and MBCT (mindfulness-based cognitive therapy) from the Centre for Mindfulness Research and Practice based in Bangor University. These are used to train future teachers and are all fully researched and scientifically proven. They are guided so you can try some out and see that you think.
good luck and KEEP RUNNING.
bangor.ac.uk/centre-for-min...
In fairness I think it's pretty difficult to concentrate on other things though when you can't tolerate screens, noise, lights, reading or exercise.
The lack of funding to our struggling NHS is unforgivable. Whilst clinical staff are treating patients with amazing care and expertise, administrators are forced to choose between emergency cases and folk on long waiting lists, meaning aftercare often has to be paid for or foregone.
If government itself won't fork out, why not raise taxes to pay for desperately needed resources and more staff (with wages proportionate to the demanding work & long hours) rather than keeping privileged folk and Tory donors sweet, amidst cynical aims for privatisation.
I'm still waiting for a cardiac appt after 6 months and treatment for an incapacitating knee injury 13 months on ; I gave up years ago on the Bi aftercare.....
Funny there's always funding for DWP ? ......
I think many people rely on the DWP after a brain injury but they also persecute people with brain injury.
I remember confronting my neuropsychologist after she had done three months of testing and mapped out my cognitive dysfunctions, (anxiety and depression levels were in the normal range). After she produced the results I asked when would the rehabilitation start and she said "you've had a brain injury for two years and after that it is known that people do not recover." I was told if this makes you feel depressed I could always go to my GP for antidepressants.
I told her she was making this up before asking if she knew about neuroplasticity because the brain can be trained no matter how long after a brain injury.
She went quiet and bright red in the face then told me that in her professional capacity she had to say that; but as a private individual she knew neuroplasticity worked. Then she said that there was no funding for rehab services and they just tried to do the best they could.
That was years ago and now we are good friends.
You have a point PV. I can't split out the two based on my experience. The consultant's team mentioned that they were throwing everything and the kitchen sink at me as I'd got to them relatively early - at around the eight month mark. So I got the physio, the graded exercise, the talking therapy and the antidepressants all at the same time. I arrived very depressed, anxious and suicidal, and this lifted in the first few weeks and it was nothing short of miraculous for me, and made a huge difference to my functioning ( I still had post concussion symptoms, but I think they helped me to cope) - and quite importantly I stopped eyeing up the knife drawer ( and the duloxetine side effect were pretty much just a bit of constipation dealt with by upping my fibre intake). Whether it was the effects of the antidepressants or the effect of talking to people who told me the problems I had with cognition, headaches, fatigue, dizziness (you all know the full list) were just the totally normal results of a mild to moderate TBI ( on the Mayo scale) but my anxiety ( which I didn't realise I had) lifted completely and I stopped being suicidal.
I see that you think antidepressants are avoidable - but with a higher percentage of the BI population being prone to depression (sometimes majorly) I'm not sure that medics should refrain from prescribing anti depressants ( so long as it's not tricyclics) because they can help you cope, at a point when your professional and social life, and financial security evaporates.
But yes, I think that if some simple practical support was given early on, perhaps we wouldn't need antidepressants?
I'm assuming you had already been to A&E got a CT scan and had been referred before seeing the consultant (was this the private or NHS consultant). If you had seen the consultant months before would it have made a difference to your depressive and suicidal moods?
Yup , I think it would have done PV. Had been to A&E, not got CT, saw GP the next morning who sent me straight back to A&E for a CT scan, but still didn't get a CT. Had mega migraine when trying to work at home ( on screen of course) sent to A&E urgently by GP and had CT scan - spoke to Dr in A&E at this point ( in retrospect, suspect this was a neurologist) who checked me out and said that it would get a bit worse before it got better, and mentioned the cascade effect thing.A few weeks later with no improvement - walking in particular was horrendous, as was the interminable headache, and all the other stuff - had spoken to a doctor friend who thought I should get an MRI asap. I spoke to my GP who thought the same, so I used firm's insurance and went to the first neurologist appointment I could ( my mistake at that point was not realising they have different specialties, as my only concern was to get an MRI as soon as possible). MRI was clear. Four months later, after trying various drugs with diabolical side effects for migraine, some of which seemed to have a deleterious effect in my cognition, and dealing with the insurance company trying to get me back into work on a highly implausible phased return - and having had neuropsychological tests, after which the private neurologist then said he 'believed me' (apparently implying that he didn't before..) he referred me to a neurologist friend of his in London who specialised in post concussion among other stuff. So I didn't get to the post concussion team for the first eight or nine months and my recovery had totally plateaued, I had constant 24/7 headaches, was on amitriptyline which made me feel like a zombie, my sleep was all over the place, walking was totally weird, and I couldn't read or tolerate noise, light or shops - and not exactly unsurprisingly, I was a suicidal mess. My only motivation was to get back to the job I loved, so felt I had to take any pills offered if it was a way to get better (not a natural pill taker by nature and the migraine drugs had been a nightmare). As the anxiety lifted within a week of starting the SNRI which was phased in, I suspect that it was more the effect of being listened to and believed that was helpful. (However not being suicidal was a great improvement. .. Would I actually have tried to commit suicide? Not convinced I would have done - there is research on older women not being likely to act on suicidal feelings - but a difficult call to make... ) Anyway, between the physio work to free the nerves in my neck, the duloxetine, the ocular motor/ vestibular exercises, following the Buffalo treadmill protocol, and a lot of therapy based on acceptance and coaching on handling fatigue I improved out of all recognition, and have continued to improve year on year, even if I didn't get back to work before I retired. I get a slight head tremor when I'm tired, stamina isn't perfect, decision making is tricky, which I think can impact my driving on unfamiliar routes, and I have a sense of trying not to take too much on. There is an odd thing about being over sensitive to stress, but I do go out to three art groups, occasionally teach art, do flower arranging competitions, have tried Spanish, yoga and chess ( yoga was really hard but I can still play chess... Spanish was early on and impossible, but Duolingo is fine) am an active member of my church, have made new post concussion friends and am gradually assuming a carer role for my mother - so I think I'm doing jolly well. Would I rather of not taken duloxetine? Yes - who wants to take pills? Did it help me deal with a difficult time, yes - I believe it did, Do I wish I'd been warned about the effect on sexual function - yes. But I do think antidepressants can be helpful in some situations, and shouldn't be ruled out completely. Plus when I came off then I was a bit more headachey and a bit more anxious, but feel that I'd rather feel a little bit sharper, and cope with the occasional mild anxiety and headache ( which apparently has a strong correlation with fatigue) . But I was a little taken aback when the neuropsychologist I went to locally ( who supported me while I tapered them off, without side effects) observed that I wasn't depressed, I'd just had a brain injury....
Must useful interventions in retrospect, were the concussion specialist sports physio, and the local neuropsychologist who worked for the local hospital trust on TBI rehab, who coached me very effectively on managing fatigue - which were not the most expensive interventions at all. Best piece of advice - from the first neurologist - was to get a secondhand exercise bike or cross trainer ( elliptical ) and use it gently for ten - twenty minutes a day - I think this stopped me deconditioning. Unfortunately catching Covid last year has now caused deconditioning and I need to figure out how best to remedy this.
have to agree wholeheartedly Pinkvision.
12 years on and the person that keeps me going most from the medical profession is my ex rehab consultant. Dr Morcos.
He rings me every 6 months and tries to fill the gap that GPs leave.
I would be lost without those calls, he told me on the last call that I could ring him anytime, I didn’t have to wait for his call.
Jxx
Wow that is amazing care and support .. are you in the uk ? Sue 😊
I am indeed Sue. Very lucky to have been in his rehab unit.
He said I was only the 4th person he had seen with PRES and I had recovered the best. I think he likes to keep in touch and monitor my ongoing health.
Janetx
From my experience I would say the most negative impacts on me were the skeptical and literally mean spirited attitude I got from some medical people (and still run in to), the torture I was put through the the legal system - which it was, and the unfair methods of the insurance co responsible for my pension - who abused their power often.
Not being able to find help and not having access to rehab were frustrating to be sure, but the impact pales in comparison to the rrdt if it
I literally have ptsd from it all.
(I used to see a neuropsychiatrist who is no longer available. The ptsd diagnosis came from him when I said 'you know I think I have some ptsd like symptoms from the way I was treated and often still get treated.' And he said ' it is not pstd like, it is actual ptsd.'
It's bad enough we have the injury without having to deal with continuingly being psychologically injured.
I will say I might had some mild situational depression, but was told by some I had more depression than that. I don't feel this is correct. After the injury my emotions changed quite a bit. I am now much less emotional and do not react the way people expect. This can cause some social problems.
I sometimes wish I could have a good cry but on one or two quite impactful occasions a strong sob surfaced for about 3 seconds and disappeared. The emotional landscape is quite deeply buried now.
I suspect this is not unusual , and is why some people with bi are mistakenly diagnosed with bipolar. It would be.an interesting research project for someone.
Leaf
I agree with you that the lack of after care and even lack of knowledge about brain injury is really challenging. Forget asking you GP ! They don't seem to have a clue. I think that it isn't everyones experience but I've noticed that people who have needed surgery seem to get more in that way. I sat just below that but have had all sorts of after affects and still do and just cannot get any help whatsoever !! However, along the way of many blood tests I insisted on because I justcknew something was wrong they discovered my vit D was desperately low and this can cause depression etc so after a mega dose course I've been told I have to stay on high dose vit D and my overall mental wellbeing has improved, it's worth looking at perhaps ?
Interesting you pointing out the difference with people needing surgery and those who do not. It may be that those who have obvious injuries are noticed by the health system and those who, lets say, have negative CT scans do not and have to fight to get support. It's also interesting that you pointed out that Vit D helped your depression. I read quite a few posts in the past saying the same thing but I don't think getting tested for it is normal after a head injury. I read the new NICE guidelines and it has introduced a hypopituitary blood test after injury to check hormone levels. I wonder if Vit D levels are part of the test.
I think the hormone level tests are pretty standard . I've had two, one at my insistence because my after affects have not improved and they are adamant that everythig is notmal. My consultant basically wrote me a letter and said it was likely to be permanent. It should be noted I never had a face.to face appt with him, all done over the phone and they refuse to see me now as they say they have done all they can do which I do not believe
Vitamin D is amazing - plus you get very tired if your levels are low - my levels (predictably perhaps, as a commuter) were really low pre TBI and high dose supplementation made me feel like a new woman. Post TBI the neuropsychiatrist said that I should avoid letting my vitamin D level fall as this would add to my fatigue and make me feel even worse.
Good morning pinkvision
Back at the start of all this very nearly 26 years ago after 4 months they let me out of Glan Clwyd general hospital because a place had been found at WNRU, Clatterbridge 4 days a week. They, like everybody else on this long journey, were very nice and kind. However it was all pretty useless, all they wanted to know was if I was anxious or depressed. My stock answer was "don't understand what the words mean so I can't be". After 4 months we had a meeting (me, then wife, consultant, nurse, physio, registrar) where they told me they'd done a wonderful job and released me. I was not unhappy at this but told them quite clearly they hadn't done anything, time had even though I was still well away with the fairies!
That was Christmas 1998, the wife got shut of me which meant I also lost my pub business. Didn't care because my father took me back into family home and business so I was safe. Before I left the pub the wife called in the doctor who had been in charge of me at Glan Clwyd for support. Dr Thomas sat in my armchair in my lounge and told me what was happening was all my own fault, not that I cared at the time.
Memory gets a bit sketchy here but I think I was called in to the Brain Injury Service for review after 5 years. Think I went a couple of times but that was it and in any case had decided they were pretty useless. This service was set up in North Wales only shortly after my accident so at this point it was still very early days. I recently learnt Dr Thomas was a big part of the original set-set-up so that explains a lot.
Anyway, being within the family unit they were all irrelevant and I did well at home and work though it was long, very slow hard work.
After 12 years (I think) I got called for review again by the Brain Injury Service. Dad, who'd just been diagnosed with advanced prostate cancer, took me. The consultant chap was as usual very nice and kind, he also decided to see me on a monthly basis going forward which was great. He told me he would help with issues going forward which though I considered unnecessary I was pleased with.
The monthly visits were changed for a yearly MOT after about 4 years at my instigation. After 5 years dad passed so on the first MOT I took my mother. Everything was fine as far as I was concerned.
After 3 years the shit hit the fan - mother joined with brother and I lost home and business for a second time, during lock-lock-down to boot.
Over these last 4 years I have learnt what anxiety is for sure though I'm still not sure about depression. I have done all the end business thoughts a few times but never actually done anything about it, fortunately I think suicide is a very silly idea.
As you are aware, I am winging everything and slowly but surely building support from Brain Injury Service, Headway, etc. around me though things do fall over quite often - it's challenging. I think drugs are best avoided if it's manageable, but that is personal and certainly would not work for many. I note you mention Bangor University which, basically, is in charge of North Wales Health Authority. The Health Authority has been in Special Measures for a decade, recently released from them and more recently put back into them. Enough said.
Best wishes
Michael
Yep, I'm in the same health authority and yes they have been in special measures for 12 out of the last 15 years. There was a huge scandal there last year because £180 million that was meant to be spent on care was 'lost.' The brain injury service is massively underfunded. Until recently they only provided psychological support for people who had positive CT scans but there were no rehab services at all. Unfortunately it's a case of living with the symptoms or finding another way to get recovered because there is simply no money in the system. Read CW 2002's comment about running and changing perspective it seems to be helping him. Take care.
Do you attend any of the local Headway groups? I've been banging on at ours since I began attending after Covid - bloody hell it's painfully slow but I think I'm beginning to make a difference 🙂
Have also made progress with the Brain Injury Service over the last year which has been given rather a lift by personnel change. My attitude is you won't get anything unless you help yourself and make what your doing fun for both the psychology and OT staff. As I keep telling them all very nicely, at 58 I may be a bit past it but it ain't over.
Keep on winging it is my motto
Best wishes
Michael
Best motto. I did go to a headway group meeting but it was in a sports hall that echoed sound and it had masses of bright lighting. I thought I was going to pass out after 5 minutes so I walked out and never went back.
I’m so sorry this was your experience. My life-line has been Second Chance Headway. Without them, I know I wouldn’t be here.
Have you tried getting in touch with them and explaining your situation? As I said, they have been my saviours. They pushed for my neurological rehabilitation referral with a consultant, and for my neurological psychology testing that I’d been promised.
Please give them another go. xx
That was about 5 years ago, I ended up using online forums such as here on Headway and others in Canada and the US. It was interesting using such a wide range of help because brain injuries are understood and dealt with very differently in different places. I recovered by using neuroplasticity-based techniques used in the US and Canada, these are considered alternative in the UK and are not used in the health system. I also studied my recovery as it happened in university for a masters degree, did a teacher training course and now I am a qualified provider for alternative rehab techniques. I am currently going through the registration and insurance process on the Foyhts list and in the next couple of months a business will be registered, and I will be providing private rehab services and giving demonstrations on YouTube for free.
That sounds amazing! Will you put your details on here, when you’re up and running?
Sure will, I've also been in touch with the Headway regional manager and I may produce something that could be used somehow. My old neuropsychologist is also interested and the research center at the university are also interested because both could see the rehab changes as they were happening. I've started the YouTube channel you can take a look if you want
youtube.com/@mendingbrokenb...
By this time next year there will be plenty of fully explained techniques available for everyone with PCS and it may help other types of brain injury too.
Did you find that people’s recovery rate differed between different countries and if so how was their rehabilitation process different from each other or were that the same ?? Sue 😊
Peoples recovery was more about if you could afford to pay for it in the US. In Canada they had a free health system but people still had to pay for certain types of treatment. The discussions in CAN and US were all about how to get their medical insurance to pay up (may be Leaf can explain the system if she reads this comment).
In both these countries their main health systems are pretty much the same as here but there are independent healthcare providers also. One group of independents call themselves neurofunctional providers and specialize in neuroplasticity techniques. Some specialize in one thing such as the Mindeye institute which was made famous in the book 'The Ghost in my Brain.' But they also linked to other providers that offered other types of brain training. These are very different from anything found in mainstream health systems, some people find them helpful, even miraculous, some get some benefit and others find they don't help at all.
As you know what works for one may not work for another.
Some of these independent providers give free demonstrations on YouTube like this youtube.com/@drjonsaunders
What I found was that there was a subculture of people on US and Canadian forums that also included a lot of people from Holland, Demark and Israel as well. I was the only Brit. But what people were doing was trying these free techniques and sharing the results. I did this and developed my own system of bits from one added to another and so on and amazingly it worked. Then as you know I went to Uni and researched what I did and found out how it worked.
These independents don't see brain injury in the same terms as mainstream health systems but both have scientific research and backing for their own type of system.
Not sure if that answers your question!
Yes it does answer as I have no knowledge of a lot that you have spoken about and I will be looking into getting the book and watching the link you sent .. 😁 I am interested in trying any approach as without trying you just don’t know .. thanks for your reply so quickly sue 😊
Canada has universal health care. It means the same things are paid for for everyone, but not everything is paid for.
For example, if you break an ankle, you get a plaster cast free and rent crutches from the hospital for a modest amount. You can get a fiber glass cast, which is lighter, if you want to pay a bit more, or an air cast for quite a bit more.
A lot of jobs have extended medical benefits , which is basically through a group life insurance arrangement. They vary quite a bit. These all will require a doctor to say you need it for any payment to be considered.
There is coverage for drugs. The government will pay a percentage of the cost for generics if the total amount you spend for the year hits a percent of you income, but that amount is based on your last year's income - so you can be injured and not be able to afford medications. You can sometimes get special things if a doc signs off an application for them.
The work insurance usually will cover drug costs. There is a 100 to 250 a year annual deductible and then they pay 60 to 100% depending on the plan, but only cover up to the amount the government one kicks in.
Not everything is covered.
When you buy drugs here there is a dispensing fee that ranged from 5.00 to 15.00 depending on the business. Drug costs also vary quite a bit and there is a website where you can enter the drug ID number and it will give you a list of pharmacies and what their prices are.
Most doctors work under the medical plan, and a lot don't. You can see a specialist and have it covered if you get a referral from a family doctor, if one is available. BTW the medical plan is part covered federally and part covered provincially. Most of the time this means you can not see a doctor who is not living in the same province as you do. Doctors that have opted out if the plan she anyone they want. You have to have deep pockets though, as they charge 400 an hour and up.
There was a private pay clinic in a city near me that dealt a lot with professional athletes with concussion but anyone could go. The estimate for treatment was 30,000. Yes, thirty thousand.
The local neuro optometrist will give you a cost estimate in advance, generally it is around 4000. It works for some and it doesn't work for others.
As for how disabled people get money - there is a federal disability program, a provincial disability program, and if you had a job that offers it, a disability pension is possible from your job. Generally it is 66% of your income, and is not adjusted for inflation - so if you are disabled at say 30, you will get no increases ever and things will be pretty grim by the time you turn 65 and hit retirement age. The work pension generally will force you to apply for the federal one and deduct any money you get there from the pension they calculate. I think recent legislation may have overturned allowing this as it is against human rights but no individual had the means to fight it. (It means you get less money when you retire than if you hadn't taken it early.)
If you are getting the federal plan you can't get the provincial one. The federal one has no benefits except the payment. Then provincial one will pay for physio, eye glasses, massage, orthotics, etc.
Some work plans will pay for the private clinic situation and I am not sure of the process there.
Most people will not have the budget to pay private clinics on their disability pensions.
There is also no universal disability recognition. Generally you must apply for each program separately and have a doctor sign off that you need it. It's a nightmare. There are a lot of glossy websites put there, but when you go to apply you will likely find you do not qualify if you have a brain injury - it's not well understood so the questionnaires don't ask the right questions. You can sometimes succeed if someone knows how to fill out the application.
It is by no means easy out there.
Thanks Leaf, that's a very scary picture you paint. I remember a lot of Canadians talking about accident insurance, they could get the basic treatment after they had been in a crash or fall, but they could not get anything else and the conversations were about the problems getting their accident insurance to pay for the further medical costs. The problem was they had to see a medical expert who worked for the insurance company to get the treatment but the experts always said if CT or MRI scans were clear then there was no brain injury and their symptoms were caused by depression or psychological problems. Most people ended up trying to find alternative treatments or used free demonstrations on YouTube to try and fix themselves.
I remember the story of an 18 year old girl in the US (different system) who got knocked off a bike, then an ambulance came and took her to hospital where she was assessed overnight and left the next day with a concussion diagnosis. Then she was sent a $38k bill. Her parents had good medical insurance but the ambulance provider and the hospital was not under the insurance scheme. Her parents went ballistic with the daughter because she was always told to check who the medical provider was if she got injured.
On the bill she was charged thousands of $'s for skin to skin contact. Her CT scan was 2000, where in the UK the cost is £150 if done private.
Again people in the US who can't afford treatment use free YouTube demos put out by independent providers as advertisements. If you visit the practitioner it will cost k's just for the one to one.
Optometry is a big thing in Canada and US on brain injury forums and like you say it works for many but not for all. I find it bizarre that this is not part of the screening in the UK because the UK has some of the best optometry training in the world but is not recognized by the health system. If you see a private optometrist here the costs are in the low hundreds plus extra for the glasses and exercises. It would be cheaper for a Canadian or American to travel to the UK for a holiday and get optometry at the same time.
It is rough out there.I was in a car accident, and got a form letter from the car insurance place saying I could not be injured because the value of the damage to my car was under a certain amount. This contradicts the laws of physics. It doesn't seem to matter.
The insurance co I had through work also declined, they said I had no proof I was injured. I could barely walk, had tremors where the range would have needed to be measured in inches, an arm that didn't work, was light and sound sensitive, irritable, physical symptoms, etc - you get the idea. Anyway I was told to get as much treatment as I could and more doc documentation and try again.
I ended up spending about 10,000 out of pocket to get the evidence to support my claims as I had to get some assessments done privately, and I had to be following up with treatment, so I was seeing 2 different physios, a massage therapist, a psychologist (who had done a formal set of assessment tests), and maybe tried a couple of other things. Of course I was on the 'get me better quick! track', not aware it was a fool's game. I likely did myself harm by pushing too hard.
The family doc I had diagnosed concussion and then post concussion. He was old school and insisted no concussion lasted more than 6 months. I switched to a different GP who was more supportive.
It was 14 months before my work insurance sent me any money, even though they had sent me a letter 7 month in saying they accepted my claim. I was told this was normal. Luckily they did pay for the entire period and I was able to clear up my debt.
Anyway it is pretty clear, from this example scenario, why most people can't afford too much private treatment, they are just trying to survive.
, and yet are forced into high put of pocket expenses - or can't pay them, can't prove they need help, and land in the street quite literally. I was super lucky.
I only found out about the local brain injury society by accident.
I did need help getting to appointments and luckily there is a community organization where volunteers will take you to medical appointments. I met a few people driving who either had a brain injury themselves and were struggling not knowing what it was, or who had a family member who was having issues and when they told me it was easy to see it was from an undiagnosed brain injury. It's pretty easy to at least suspect based on behaviour and history and I really don't get why gp's are so poorly informed. The psychologist I saw early on knew I had a brain injury the first time I called her, after 10 seconds or so on the phone. After that it was getting assessed and trying to find a specialist who would confirm. (And that was sheer luck as well - I ended up seeing a neuropsychiatrist.)
I can also say that other than the neuropsych I received zero treatment from the medical system that was bi related - no physio, no OT, no program, nada.
So, I also went the find my own therapy route - what I could do at home, mostly.
For an unlucky person I am pretty lucky. I kept getting saved in the nick of time.
Enlightening story, thanks for sharing. Yes the attitude I found when I used forums in the US and Canada was very different to here in the UK, Headway. I found that people were really proactive in North America, constantly searching for and asking questions about alternative solutions because they could not afford or their insurance did not cover rehab. I'll probably get it in the neck for saying this, but in the UK we are all dependent on the state for healthcare and state benefits to a large extent and now that this system has been squeezed and services reduced many people are lost and don't know what to do. Another thing is that the alternatives talked about and used across the pond are seen as mumbo jumbo by our health system and are not to be trusted. I think that scares people off but I experimented and tried these alternatives and they worked, it takes time, commitment and hard work but they worked.
Docs here also see alternatives as mumbo jumbo. It is generally wise not to mention them, or you risk your credibility with them, and they are more likely to blow you off.
Because of the tremors I was not uncommonly accused of taking illegal drugs and having an abuse problem. I do not and never have had.
The nice family doc I had left town and I have not had one since, I have to use the walk in clinic and hope I don't get attitude. As a lot of the symptoms have settled it has gotten a bit easier, though I do have intermittent tremors that interfere with walking.
Someone from a group I was in years ago at the bi society here recently told me she had a good result with Lion's Mane though it took about 3 months to see a change, and at about month 6 she can now go for long walks. I am going to start it soon as I just researched which brand I feel comfortable taking.
It does lead to another wrinkle living in Canada - the product is made in Canada but marketed through a US address, so I had to find a company that collects duty on their end to avoid brokers. (Customs brokers charge ridiculous amounts to get your package through customs - the postal service is the most modest, though many US based companies insist on using FedEx or UPS only - prices are over 50 per package and you don't get the bill until it arrives or , in the case of DHL, about 6 weeks after you get the package. In some cases the fee is more than the value of what you bought.)
Ah, I did not mean that kind of alternative, I meant neurophysio/chiro, optometry, osteopath, mindfulness etc.
OK. I have found some supplements very helpful.
I do get that NDs are not always considered reliable to medical people because they can target such a variety if approaches and some are more out there than others.
I also find acupuncture helps though can also be over stimulating so I only use it sparingly and tell them not to use certain points.
Thanks
NHS been really good for me. Mood drop relates to having become a new person in many ways. Having changes in what I can manage and doing it by myself. At end of the day what happens starts with me.
My thoughts on this ebb and flow as you can probably guess, but a few for what they're worth:
- Suspect there are too many variables to ever draw any statistical conclusions. Aren't people with a history of mental illness, migraines or being female more likely to develop PCS I thought? I have all of these.
- Other factors in your daily life with PCS will impact this - if I were working at present or was a carer/parent I think I would feel depressed as it would be too much. I was actually so run down and not coping well before my TBI that having no choice but NOT to work or drive, and having permission to focus on my health and my selfish with it for the first time in years, in many ways has actually *helped* my mental health.
- I do feel hopeless, often, about my future and my chances of ever buying a home/finding a partner/driving again/ having any independence/ climbing, hiking, working again etc etc etc. But I don't know what of that is the fact that I haven't had much help, and what is that genuinely you can tinker around the edges but TBI just *does* take time.
- No longer being able to do my normal coping mechanisms really sucks. So many times I think, actually, what I really need is a coffee, a pint, or a crag session. Even a ruddy walk in the Peak on my own. Good god. I don't think there is really anything I can still, unadulteratedly, do!
- Being mostly left to solve this myself - having to tell my GP what I need (after I'd researched it, and I often can't do screens), and the fact there doesn't seem to be much local Headway presence, and others having little understanding of what I'm going through - plus many friends disappearing, and others expecting I must have a partner/driver at home to do all this for me - has been a source of frustration and alienation.
- Many people here will be suffering with their mental health, and I don't want this conversation to inadvertently diminish that.
Because you had issues before your injury can you tell the difference between those and PCS symptoms and if so what are they. I'm asking because what may be diagnosed as depression or other mental health issue I suspect may be very different from PCS.
I did not have depression, but I had all the standard PCS symptoms, memory, cognitive, visual, hearing, fatigue, gastric, passing out, seeing fantastical visions and patterns in my mind, could not read or speak properly, etc.
I could see it all but from a distance and noticed the changes as time went on. I remember I did not panic but seemed quite calm and saw it for what it was.
Oddly I only got anxious and panicky when my cognitive functions began to work, it's as if it was these cognitive processes were causing the issues by thinking about them.
Really I'm trying to find the distinction, the difference between what depression and PCS symptoms are. Most of the doctors and consultants I saw said my PCS symptoms were caused by depression which was confusing because I was not depressed. That's why I take the position I do because I think many people are being diagnoses with depression but their symptoms are PCS symptoms instead.
What's the difference, what is depression and how can anyone tell the difference from PCS.
*You may find an easy bouldering session, big juggy holds and positive foot placings, helpful.*
Haha do you boulder? I've been wondering about going as I thought it might actually help my coordination and mood, but a) I'm not sure how long I have to worry about hitting my head again (although I've never had a concussion from climbing, it's always been from using cars or doors..!) and b) I think I'd find an indoor wall far too loud but other folk tend to be at work in the day. I did one attempted top rope outdoors the other week but I was awful and stressed... Anyway... I know that wasn't what you asked, but it's far more interesting 😅
What about outside, but then again you got grit up your way which would make it harder without positive holds.
Re depression, for me that would manifest as frequent low mood and lack of mental energy and interest in things. Feeling sort of numb and shit. I've had that years ago, and maybe at some points more recently, but I don't think I feel like that every day at the moment post-TBI.
I have a host of other PCS symptoms but those aren't depression and I think they're quite clearly distinct.
Fwiw I don't think the TBI itself has caused depression for me, but the circumstances I'm now living in might yet. I'm just someone who's vulnerable to it and feeling shit about my life might tip me back there.
That's not to say the TBI itself might not cause it for others - in the same way I don't have blurred vision, but others do.
I do think the TBI has worsened my OCD, but whether that's the injury or it's just the way excess anxiety is bubbling over - and let's face it, going through all this does cause a lot of anxiety - I don't know. Again, when I'm otherwise unwell, stressed or feeling shit about things, ΤΒΙ or other, my OCD can get worse.
And I'd add the caveat that I suffer from PMDD, which involves very sudden, horrifically low mood and hopelessness (and some other things) premenstrually, and that hasn't been easy to deal with when it coincides with not knowing if I'll ever work, climb, etc again. But that is time-bound so not really relevant.
I really wouldn't want just my experiences to be extrapolated to anything though - I strongly suspect that it can cause or worsen depression for a lot of people, and there probably are days when I do feel like that now, it's just that there were plenty of days beforehand when I did too, and not having to work (other than - not knowing when I'll be able to earn a living again!) has been great... How often it causes it physiologically, and how often the circumstances it places us in do - whether that's NHS or other things, like loss of earnings - I don't know.
'it's as if it was these cognitive processes were causing the issues by thinking about them' - I'm not sure if this is what you mean, but I have been struck by my brain's own coping mechanism whereby I just seem to want to shut down from thinking about stressful things sometimes, as if it knows that it's too much for me. My stress tolerance has definitely plummeted.
Sorry, one more thought, then I promise I'll shut up (for a bit!) - but I do feel, in my personal experience, that they list behavioural and mood changes as a lot more central to the key PCS symptoms than I think was true for me. I am irritable, but that's because my brain buffers, I'm sensitive to sound and noise, and a lot of other people are fucking irritating. 
*
But it may well be that these are the symptoms that are the most obvious to OTHER people, as they can't see our cognitive confusion, photophobia, forgetting words, etc so much that is happening behind the scenes, so to speak - or that they just have an established pathway to treat them so they focus on what they can do easily.
* If one more person plays their phone out loud on this train I am claiming diminished responsibility for my actions
Really good points in all your replies, thanks.
I've tended to look at the NHS as a break and fix organisation rather than a realistic option for longer term conditions.
I've fallen off motorbikes and broken things and been in surgery within hours and home the next day.
As soon as you present with something that requires longer term treatment, then the waiting list is in itself a huge source of potential depression.
Any type of chronic condition that requires multiple diagnoses to identify can end up taking two years to conclude, leaving people living with undiagnosed and hence untreated conditions that can wreak havoc on quality of life.
Between funding issues and the time taken for NICE to update treatment recommendations and then somehow many practitioners still following out of date advice, we have ended up with a very compromised service..
So much politicisation of the service certainly hasn't helped either.
Hi PV, interesting questions on this thread. I think the problem for GPs is that (when we can remember our symptoms in the surgery - it took me a while to remember to write everything down first) a lot of the symptoms of depression and PCS are exactly the same - so in a time-starved environment it makes some (small) sense to dole out antidepressants first and ask questions later. Trouble is, it feeds the myth that PCS is just depression. But like Ideogram says, living with a brain injury with a concomitant loss of livelihood and all the rest of the weird brain issues of course, can be depressing in itself - even if it doesn't result in clinical depression. That's why it's important to get in front of neuropsychiatrists and neuropsychologists, but wth the 'Catch 22' that you have to get past the GP in the first place..
However, if someone is suicidal, as I was ( not that I told the medics at the time oddly enough..) which seems can be part of the whole BI experience, I'm not sure that practitioners should necessarily withhold antidepressants. What's your view on that?
And it was the neuropsychiatrist that identified that I was very anxious ( though again I'm not sure that this isn't a reasonable response to living on your own with the results of a brain injury for eight months?!) My issue is that I didn't think I was anxious at the time, and that when it lifted on the SNRI it was amazing. Having identified anxiety (mainly endless googling in my case) should medics then prescribe drugs, or wait to see if talking therapy and rehab does the trick without drugs?
Plus my neuropsychiatrist mentioned that I would have an increased response to stress ( I think that's still there - I think it's because of a deficit in executive function that makes decision-making difficult actually, now I've had the chance to step back and determine what's going on) so my personal feeling is that being 'damped down' with the SNRI allowed me to cope through my rehab. (Plus there's the idea that duloxetine has a pain relief function.)
But I think you're right in that just antidepressants and no rehab isn't the way to go. Or is anything better than nothing?
You should get all the support you need if you are suicidal no matter what it is. The question is what is causing the suicidal thoughts, again like depression is it the sense of hopelessness? Did you find using this forum helpful because you could share your experience and realize that others shared aspects of your experience too. Did that make a difference and ease the suicidality?
I'd got past that point by the time I'd found the forum PV - I think it may have been triggered by the BI, but on the other hand, being unable to do my much loved job may have been a factor, my career was riding high at the point I was injured. But reading other people's experiences on here somehow validated my experience and was more reassuring than months of therapy. It's very isolating when we first get injured, isn't it? I think even when someone with MTBI rants, a bit of me goes, I know what that feels like, I've been there ... I've always felt quite guilty that because I went private on the firm, I got treatment that people with concussion don't seem to be able to access on the NHS. And as my doctor friend pointed out these were not expensive or complicated interventions - it does make me angry that people with MTBI are left to cope on their own.
Yep that's it. It starts with the injury and there's quite a bit of time before any referrals etc and people get isolated while facing bizarre symptoms that are unimaginable to people who have not had a brain injury and in many cases are not believed. There's no one to turn to or talk to that can understand and it may lead to depression. Thoughts may range into what's going to happen in the future, job prospects chances of doing things in life etc; despair. Would the despair happen if there was something like this site or similar to make people feel less isolated. It seems like people find this site later after the despair and I have read much about the relief in being able to communicate with others who are having and understanding the same experiences.
But there is a societal drive to keep pushing, forcing yourself to heal, to get back to work, to get back to normal, it's expected and probably makes it worse. If there was a system of clear information, shared experience and good advice early on would it reduce the despair and depression? Would knowing your job was safe but you just need the time to recover make a difference and rather than push you could have the chance to recover.
You quite often refer to the book 'Mindfulness and Stroke' especially the second half and point out the emotional and depressive effects. But reading the first half it was more about trying to understand what was happening on a day to day basis. The depression set in later with the urge to return to work but no one explained what was really happening to her from her experience. The thing that stands out was the sensory processing, no one addressed that other than a cursory description in the second half of the book saying it was a trigger for cognitive issues. Jody never had contact with others who had these experiences, oh I think she did meet up with one other person, but the description was not elaborated on.
I'm saying this because if Jody had contact with others, like the people who find this site after being isolated and getting in a state of despair then would her experience be different. I'm also thinking if there was some kind of sensory screening and treatment then the cognitive fallout may not be as serious. Would she have developed depression. Prevention is better than cure right?
I'm just trying to figure out if better explanation, resources of shared experience, knowledge that your job and pay were safe in the first few months after injury would cause less despair and depression.
How could it be done?
Yes, think you're right. If GPs were more clued up on the first place and able to offer more reassurance, and point to Headway that would at least be a start. I think the 'malingering myth' also needs to be laid to rest once and for all. It would be good if Headway had the resource to campaign to educate GPs. It wouldn't hurt to quantify how many people actually present to A&E and GPs with concussion, it strikes me that some good statistics on actual recovery times would be useful (instead of assuming everyone is totally fine in three months).
My job was fairly safe originally, but there's still an internal pressure to get back to work
That Heady app that Theo Farley was working on is I think an effort to fill the gap that exists. As a sports physio, his early impetus for specialising in concussion rehab was the young athletes left with concussions and no support.
Yep the sports physio, chiro and some eastern style exercises are good and even better when combined with optometry. These two had the biggest impact in my recovery by far and both brought a belief that recovery was possible boosting the sense of wellbeing.
There seems to be a bit of a split with depression because some people may be susceptible to it especially if they had it before. I see the point in prescribing them for this but like in the post on the radio program about prescribing them for everyone in the early days after TBI I'm not sure about.
I had depression before my TBI and what I’ve have dealt with now is nothing like the depression I had before .. I have tried to come off antidepressants as I was emotionally dead and was doing well with a very long withdrawal from them but my anxiety went though the roof and I was still emotionally dead .. wind on a year and have now up my does as my anxiety and depression had raised again because of more pain , being unable to concentrate etc in trying to work that has escalated the depression and anxiety plus again in waiting lists to see Drs , hospitals and dealing with there lack of knowledge .. so I am paying to see a neurologist in two weeks to help me understand what is going on and possibly a scan .. so the anxiety level and depression would be alleviated to some degree if someone would see me .. clarity and understanding would help Sue 😊
It seems like antidepressants are needed to maintain a balance as best as possible until you get some answers and hopefully some kind of help.
I think that reflects my experience PV. I sort of resented being on an antidepressant, but I think they helped me cope during the rehab process, and adjusting to a premature retirement. The neuropsychiatrist would have been happy for me to stay on a low dose 'ticking away in the background'. And certainly although I was signed off by him, and the neuropsychologist, I did have a higher level of anxiety and headache after I stopped taking the SNRI - but I think I'd been coached in enough coping strategies by then to get through, including those on the MBSR course recommended by the neuropsychologist that did my tests.
I think there might be something to learn from the ADHD community on coping strategies too. I hadn't realised that apparently it's typified by a malfunctioning executive function - which of course is the same for many of us ( including me) here. Makes me wonder if this is why sometimes people on here have been belatedly diagnosed as having ADHD - so is it ADHD, or is it the impact of a brain injury on executive function?
yes and taking the private route has given me so hope of understanding Sue x
My depression is not solely post BI and because of that it has made my rehab more complex. I had reached carer burnout and depression in the months leading up to my brain injury and it knocked me for six. The first time in my life i had lost hope and i felt broken through worry for my family member and the strain on me to care for her and engage with bureaucracy. Covid times had set her back 100 fold.
This was the reason why my brain bleeds were not taken seriously for 3 months until i collapsed after my functioning slowly ceased (speech, walking, opening eyes, eating). The diagnosing health care system explained my symptoms as mental health despite me saying i had hurt my head and neck. They had requested a scan but I never made the appointment due to waiting delays and I was taken in as an emergency when i collapsed.
I felt cured from depression after my surgery and felt wonderful. I remember thinking if this is how people feel mentally then life would be so easy! I felt like my hospital ward was the party bus! I was also transported back to feeling like 5 years old and loved the experience. Unfortunately I contracted covid and had to be isolated and it went downhill from there. My party time came to a sudden end and i was very frightened. I developed panic symptoms which i had never experienced before. It made my home coming complex and the rehab team were very good support. I regained my cheerfulness and light heartedness.
Then it took about 18 months for the depressions to creep back in. In that 18 months I grappled with my limitations and had the same home life situation with a family member who causes me a lot of stress and who requires care. My husband was struggling due to his additional respomnsibilities and kept going under. Constant high levels of fatigue has really got me down and i expect is part BI and depression...
I had responded very well to BI rehab at home and counselling sessions with their psychologist. i feel i need to arrange sessions with someone but havent found something to fit my finances nor would it easily fit in to my life as i'd prefer face to face.
With such lack of NHS funding, MH takes a backseat to physical health. I have felt the brunt of this over many years due to my daughter's situation. Physical health care is crummy and MH care is poorer still. I tried a community MH OT but she did not communicate from a BI perspective and it made me more stressed and the sessions had to stop.
I dont think negative thoughts, i am a glass is half full person, but constant worry and stress about my family members needs and lack of support leads to depression for me. I literally feel my brain chemistry shift. With BI and fatigue it feels similar, I feel the brain changes.
Interesting sequence; you had mental health issues before having a brain injury; no one believed you had a brain injury because of the mental health issues and therefore no CT scan was done. It took 3 months to get a scan because you collapsed and a scan showed you had brain bleeds.
The next part is really interesting because the effects of the brain injury wiped out the thoughts that made you depressed. But getting covid caused some mental health issues because of isolation but these passed when you got home.
You got some rehab and therapy which went well but your mental health got worse because there was not enough of it. You try to be positive but life worries creep in and make you anxious.
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