Self-diagnosed PCS, looking for some support & answers after 7 months
 

Hello,

My name's Abbi (I'm in the UK) and I've been living with PCS symptoms for 7 months. I haven't worked since December, I'm experiencing depression and some anxiety and it all feels pretty hopeless and like I'm no closer to getting answers.
In the last month I've started to really struggle and I feel like I need more support from people who understand this, so I thought I'd try this forum.

I had an accident in December where I was assaulted at work by someone with mental health conditions (a patient). I was grabbed by the hair from behind and had my head yanked back, I also was hit in the back of the head a few times, but not very hard.
I sustained a whiplash injury from this. After the incident I suffered an intense headache which pain killers would not help and had bad headaches for the next month.
A month later I was in a minor car accident where someone went into the back of my car. I suffered whiplash and also a back injury.

Since the second accident I've been suffering from PCS-like symptoms:

• Slow processing (I have to stop people when they're explaining something to me, so that I can process the first thing they said. If they keep going I don't take any of it in and get what I call a brain meltdown. I get a headache and feel stressed and confused)
• Memory issues (I used to have a very good memory, now I have to check and recheck things with people they have already told me)
• Sensory overload (sometimes I feel overwhelmed by a lot of information, like when I was watching a show at a festival. I end up having to close my eyes, jam my fingers in my ears and lie down until I feel normal again)
• I find trying to deal with/weigh up different information at once very difficult, so find decision making really hard, even something as simple as choosing what I want to eat from a menu or buying a drink from a shop
• I find it hard to find the right words and use the wrong versions of words such as 'he didn't wanted to do that' or 'that would be a lot of pain to do' (I meant that would be a pain to do/that would be a lot of effort to do)
• When people dictate something to me to write down like an email address, I would say the letters out loud as I wrote them but would write different ones down, like I'd say 'A' but would write 'I'
• If I'm under pressure to say something, I just go blank, like if there are several people in a conversation and they're all listening to me, I just forget what I was saying and have to stop talking altogether
• Really clumsy, I keep tripping over, banging my head, knocking things over, I've never been like that before
• Difficulty concentrating (I find it really hard to stay on task and get very easily distracted)
• Memory problems/forgetfulness (I've always been very careful with my possessions, I rarely lost anything, but I am now doing things like forgetting to lock my car regularly, lost my credit card and driving license, leaving things at people's houses etc)
• Social mistakes (I keep making little social mistakes, like forgetting to say goodbye or forgetting to offer help or general polite things that I would always have done before)
• I have a lot of trouble sleeping, most nights I don't sleep well

There are loads more little things, I'm also suffering from depression which has gotten worse and sometimes anxiety, but not so much these days.

I've seen my GP more times than I can count and he has been very dismissive of my symptoms, telling me it's psychological. I eventually got him to refer me for an MRI which was clear.
I moved recently and started with a new GP who told me he thought I was stressed and that's what all the symptoms are from. He referred me for CBT, but the CBT people agreed with me that my symptoms are not likely to be from depression/anxiety/stress and they have referred me to a brain injury place for support (not treatment).

I saw a Psychiatrist for my claim (having to claim due to financial difficulties) and he said my symptoms are not due to depression etc and if I was his patient he would refer me to a neurologist. He told me to take the report he would write to my GP and ask for a referral.
I've now been referred to a neurologist for some very short sort of assessment, but this isn't until January and I'm sure that all that will happen is he will refer me on for neuropsychological tests, which could take another 4/5 months to be seen.

I'm so so tired of all this, the current situation is I'm not working, I'm depressed, I continue to experience the same symptoms (it's hard to tell but I don't feel like there has been much improvement. I keep notes of issues I have so I can tell if they reduce), I'm in financial difficulties because of not working, I still don't have a diagnosis and although I finally have a referral to neurology, I still feel like it will take a year to actually see someone.
I feel like my career has been ruined (I was going to apply to start my clinical training to become a clinical psychologist this December, but now I can't apply this year) and I'm really scared I will never get better, as I know some people don't and that most get better within a few months and from what I read, after this length of time, the prognosis isn't great.
It feels like there is no end in sight and I don't know how to get out of this hole I'm in. I want to work but have no confidence in my abilities at the moment, I have no idea what I can and can't do and am scared I won't be able to do things and will let people down.

I'm sorry if I haven't made much sense, I'm not great at ordering things anymore, but hopefully you'll understand my situation and maybe be able to help somehow, I don't know.
I just want some answers

Hi Abbilee,

Welcome to our little brain boo boo club here at NT.

Sadly, the dismissive attitude you're encountering from your doctors is pretty much a universal experience for those of us with the "invisible injury." Doctors receive very little training about TBI - and their ignorance shows. What they don't understand becomes a product of your psychological weakness. This is especially stupid as depression and anxiety are SYMPTOMS of PCS, not its cause.

Your GPs might be labouring under the impression that PCS can only follow injuries that involve penetration of the skull and/or being knocked out. In fact, whiplash, with the brain striking the rough, hard interior of the skull, is a VERY common mechanism for PCS. Sadly, MRIs and CatScans are not sensitive enough to image damage to all those tiny axons. Aside from showing bleeds, these tests will come back clear - and the unsophisticated doctor will proclaim the patient, fine.

The good news for you is that other medical professionals, including a psychiatrist, are taking your symptoms seriously.

My advice to you is to push for a neuro-psych examination. As a psychology student, you are probably familiar with the term. That might really be the best way to prove your injury. More importantly, it will help target cognitive therapies, like Attention Processing Training, etc, that could improve your functioning.

My experience has convinced me that one of the reasons doctors are so dismissive of TBI is that it is very hard for them to treat. In the early stages of the injury, the most important things seem to be sleep, proper diet and mental and physical rest.

Are you symptoms persisting, or more pronounced, because you are doing too much? TBI patients have to learn to listen to our body, although we rarely like what it's saying.

Again welcome - you are among people who understand.

...and one other thing:

Don't be surprised if your don't get much help from the neurologist. It might be a good idea to push for a consult with a Physical Medicine Specialist.

Hi Abbillee and welcome,

I'm sure everyone here relates to what you're experiencing, I know it can get really depressing, as Hockey says, depression is a symptom too.

I saw a neurologist who said I'm either having a lot of symptoms from the concussion, including some kind of seizures, or....it's because I'm depressed!!!

Nope! I wasn't depressed before the accident!

Hockey has great advice, I am going for the neuro-psych exam so hope you go for one too.

VERY, very important, don't try to do too much, rest, eat well, do not over do it, I couldn't read or walk properly after the concussion, it takes time.

For me, the "mental" stuff has been so difficult, I feel brain damaged and think I'll never be the same, having a lot of problems and then other new things are popping up.

Look around on this forum, people understand what you're going through, it can help to know you're not alone.

Hang in there Abbillee, really look after yourself, others will be along to help you. hugs....

Abbilee,

My biggest concern for you is an upper neck injury. The injuries you have suffered can cause serious but subtle injuries to the upper neck that can make any concussion problems much worse.

You should try icing your upper neck. You should also be very careful with neck and head posture, especially when sleeping or resting. Try to keep your head from tilting off to either side or forward.

You can help some of us by not making long lists. I can not read your long list of symptoms. I can not find the start of the next line when there are more than 5 lines or so without a paragraph space. To me, it just becomes a large jumble of letters.

I and many others will suggest that you not depend on a neuro to help you get better. They rarely have much to offer. A diagnosis does not change your condition.

You can help yourself with good brain nutrition. The Vitamins and Supplements sticky at the top has good info.

My best to you.

Agrees with others on neurologists.

They have a very limited number of tools to help our issues. Most will just keep trying different meds in hoping one finally works or time heals it so they dont have to deal with us anymore.

Abbilee, I'm so sorry you are going through all this.
Have you/ do you notice improvement of your symptoms bit by bit?

Abbilee,

Are you still out there ? How are you doing ?

Yes I'm still here, sorry I don't get email alerts when I have replies and I keep forgetting about this to check it.

My apologies re the list, I would also find it hard to read, it was hard to write but I wanted to give as much info as possible and also I just didn't think about it!

Hockey: Thanks for the advice, the more I've read about neurology and Neuropsychology the more I realise the latter is going to be most helpful.
I'm not sure what to do though, should I just go back to my GP and ask him to change the referral? Is there any point in me seeing a neurologist or should I cancel that?

To answer your question, I'm not sure if I'm doing too much. I have so much time to fill and my mood sinks very quickly when I'm either by myself or not busy so I try to keep myself occupied all the time, I mostly just spend time with people really.
I don't do a lot of very physical things, the one thing I do is go canoeing which helps with my mood and I take it very gently.

I'm confident I'm getting mental rest,I avoid things that I know I find difficult like if someone wants to teach me something I say no because it's exhausting and gives me a terrible headache.
I have a lot of sleep problems that I'm trying not to medicate, sometimes this is i think due to the PCS and occasionally due to back pain.

Thank you for the bit about mechanisms of brain injury, it helps, I'd been telling myself for a while that I couldn't have PCS because I didn't hit my head or have a diagnosis of a concussion but it fits so perfectly with my symptoms.

Sitke: are you in the UK too? Please let me know how you get on with the Neuropsych thing.

Mark: My neck was injured but it healed pretty quickly, after the second accident it was fine after a month or so.

Heather: I keep a note on my phone where I write down all the cognitive problems I experience so I can see if I improve, but having just looked through it, I don't think anything has really changed.
The only one I can think of is sometimes I would have to close my eyes to think of the word I wanted to say.I used to do that all the time but now it's only occasional or when I'm really tired.
I also think though that I have to some extent stopped trying to find the right word and will just say the one that I think of, even though I know it's not quite right.

I also feel like it's hard to accurately say about what cognitive things have improved because I am rarely needing to actually use my brain in ways which challenge it. I am generally avoiding thinking....



I just want to say thanks so much for all your advice and being so supportive, it really helps x

Hi Abbilee,

I know what you mean about GP's - IMO most can be replaced by a SSRI vending machine!

Have you contacted your local branch of Headway? If you have any problems with doctors etc they can act as your advocate and give you lots of good advice.

I can't believe you have to wait until January to see a neurologist... then again I can as my dad died waiting for a heart op.

Yes, I spoke to headway recently, I called them and the lady I spoke to just let me talk and talk for an hour, such a simple thing but I was so grateful for her time.
They said they'd send me some info by email but I haven't heard from them.


One of the things I wanted some advice about was in relation to working. Prior to the accident I was working in a managerial position which I did sort of try to return to, but I also knew I wouldn't be able to handle it. I tried my best but I was in way over my head, it was horrible, I felt so overwhelmed.

Having not worked for over 7 months, my financial situation is not great. I applied for job seekers allowance as I was not signed off work at the time, but i have now been signed off and am on Employment Support Allowance.
However, I was required to apply for jobs before and I've been offered an interview. I only applied for really low level stuff as I knew I couldn't handle what I'm qualified to do, but I have lost all confidence in my abilities, I'm really unsure of what I can and can't do now.

I feel like working, if I can do it, would help me get better as I'd be occupied so I'd feel happier, gain confidence, use my brain again (good idea or bad idea? Should I be 'exercising' my brain or letting it rest? How long do I rest it for?!) and have less financial pressure on me.
But, I'm scared I won't make it through the interview, or, even worse, I'm scared i might be offered the job!
The job is administrator in the disability section of a university.

Are you guys all working? If so, how well are you managing?

Oh also, I'm considering asking them to make 'reasonable adjustments' during the interview, such as providing the questions they're asking me written down, as I'm sure I'm going to forget the question immediately or have trouble processing what they're actually asking me.

Do you think this is reasonable? Is there anything else I could/should ask them to change/do?

Abbilee,

Welcome back. I think you should do the interview. Rather than ask for the questions to be written down, you may just ask that the questions be simplified. No complex questions with multiple concepts. Those complex questions can usually be broken down into a few separate questions. Often, our verbal recall is fine with a single subject but gets into trouble when the sentence gets more complex.

A disability department might just be the place for you.

It is important to remember that it is rare that our intelligence is effected by our injury. Memory and processing speed are the common problems. Plus, needing to work in a distraction free environment. We usually just have to learn to do things in a slower more methodical way.

Using our brains is important but getting involved in conversation with too many people can be fatiguing.

The important thing to remember is to limit the peaks of mental effort. Taking on a strenuous task with the idea of resting afterward is often a mistake.

Regarding your neck, often the residual injury is not symptomatic in a physical way. It can be very subtle and cause inflammation that interrupts blood flow and nerve signals to the brain. Being disciplined with head and neck posture can reduce the chance of this subtle inflammation.

Stay in touch.

My best to you.

Thanks Mark, I'm definitely going to do it, but from a suggestion from a friend I'm going to call HR and discuss adjustments that could be made to help me to manage the interview.
I think simpler questions would be ideal but I also feel a bit unsure of asking for that adjustment to be made, I'd feel like I was being awkward, you know?

Yes, if you can find an advocate that would be great. I am in Canada and I'll give my experience here in Ontario.

For about two years I played the medical system game: GP, Osteopath, Psychiatrist, Sleep study doctor. NONE could help with my TBI complaints.

I found the Ontario Brain Injury Association and they were able to get me in to see a Neurosurgeon who specializes in head injuries, especially sports related injuries. I had to wait three weeks! Nice.

He saw my brain scan, asked why i was doing so well, and put me on a rehab plan. The rehab includes daily meditation, daily exercise and daily vitamin/mineral supplements.

In summary, 42 years of waiting for someone to understand became three weeks. I now read everything i can absorb about the brain and TBI, and I have taken responsibility for my own knowledge. An advocate has proven to be very valuable for me.

Myth- Brain Damage is always permanent.

after more serious brain injury, such as stroke, research indicates that — especially with the help of therapy — the brain may be capable of developing new connections and “reroute” function through healthy areas.
BrainFacts.org

HR called me today and they're going to both simplify the questions and write them down for me :) they were really nice and said they'll repeat whatever I need them to.
I'm still really worried I can't do this job, but I'll see what comes of the interview and take it from there.

I've spoken to my GP and the hospital re my neurologist appointment and it seems they (the hospital) review the referral from my GP and then decide who I need to see within that department, so I'm to call in two weeks and then I should find out who I'm seeing, so that's something and hopefully it'll be a Neuropsych.
My GP also said if I can't get a cancellation so I can be seen quicker he'll write them a letter and try to push for an earlier appointment, so I'm feeling more positive about progress towards a diagnosis now

A neuropsych is not usually part of the referral system for a hospital unless you are working with the rehabilitation department. A neuro-psychologist is not an MD.

I think you should really try for this job in the disabilities department. If anybody is going to be able to understand your condition, they would. I doubt the pace of the job is fast. Those types of issues tend to move slowly.

I didn't get the job. I'm not exactly disappointed about not getting that job, but it's got me pretty down about my future employment.

I think I didn't get it because I didn't prepare as much as I should have but also didn't think it through very well (this is the PCS bit I think) and I prepared for an interview as I have always prepared for interviews in my sector.
But this wasn't the kind of job I would usually do, so my preparation wasn't really relevant and I was entirely unaware of this until after the interview.

This is almost what frustrates me the most, I'm confident I have always been pretty self-aware (friends and colleagues have also said this) and generally I know when I do well and when I don't and why.

I came away from the interview feeling that actually it went alright and it wasn't until they called and gave me feedback to say that my answers weren't really relevant to the job role (as it's more admin and I was focusing on customer service as I've always had a much more frontline role) that I realised I had fudged the whole thing basically.

I know this sort of thing happens to many people at interviews, but I was so unaware of how I had actually done and that's really unnerving.


It's not so much the finance, suffice to say I am lucky enough that I may not have financial concerns now, but I got such a huge amount out of my job, out of being in a position of authority, out of the success I had and my ability to problem solve etc.
Even if I had got that job, it wouldn't do that for me, I think I would be feeling so ***** at feeling like I'd basically been demoted and I'm not sure I would ever get over that.

Also, I couldn't even get a lowly admin job that I'm well over-qualified for, I have no idea what to try for now!

I thinking about doing some volunteer work for the time being, I'm hoping that might help lift me a bit

TBI can rob patients of self-awareness. Some, despite HUGE deficits and/or outlandish behaviours, can't even recognize that they are injured. I guess we can all be thankful not to be that bad.

I can relate to your interview story. Except for a couple areas, I thought I'd done really well on my neuro-psych exam. Wrong! Bombs away. :eek:

I think the volunteer work is a good idea. It will reduce your isolation, help rebuild your self-esteem and maybe even set you on a new career path. Just don't overdo it. Listen to your body and don't push past your limits.

Just thought I'd post a little update.

I got a letter from the hospital/neurology department which was also sent to my GP, basically saying 'oh your patient doesn't need to see us, she needs cognitive assessment, you need to re-refer her to this department'.

The original referral was made in August and after talking to people on here, I went back to my GP and said 'I think you're referring me to the wrong person, I need cognitive assessment'. He basically patted my hand and told me it was fine.
2 months later, oh look, I need to be re-referred!!!! :mad:

What a waste of 2 months.

Anyway, it looks like I'm on the right track now, just waiting for the letter for the re-referral and hoping I can get an appointment soon.
I spoke to the hospital appointment team and it seems the wait might be as short as 6 weeks, so I may well get seen sooner rather than later.

I applied to be a volunteer and have been going to training once a week for the last month, I should be starting soon.

Other than that, not a lot has changed.
Big sleep problems which are making my cognitive deficits worse, other than that I'm still just plodding along and waiting to be seen!

On the upside, the anti-depressants have made a big difference and I feel more stable now :)

What anti depressants are you taking, some of them like amitryptaline or mirtazapine might improve your sleep. I've been considering mirtazapine for a while now for my poor sleep.

The NHS moves at a glacial rate, I think they hope you will recover while waiting. I reckon you did the right thing going for the job interview, it's easy to start blaming things on PCS when they might have turned out the same anyway. I would make sure you don't get stressed, do some light exercise each day, eat a good diet, take vitamins and wait for your brain to repair which it will do in its own time and no one elses.

Thanks, yeah I'm doing all of those and trying not to think about the future too much.
At the moment I'm just anticipating the referral letter through the post, it's sad how I rush to check the post each day!

I'm on citalopram at the moment, it's the only one I've tried so far