Venting/advice Post Concussion Syndrome: Sorry soooo... - Headway

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Venting/advice Post Concussion Syndrome

fitz5392 profile image
12 Replies

Sorry soooo long.

I’m almost 2 years post car accident with a diagnosis of Post Comcussive Syndrome. For about a year and a half I have been going to OT and for a year Speech therapy. I was also going to PT but was discharged a few months ago.

In order to get back to work- I’m a school nurse, I volunteer two half days a week at a local school. Where I am supervised.

I have had a doctor tell me I have processing issues and I am definitely not working at my normal fast pace.

Over the past week I had a meeting with OT/Speech where I felt I was being strong armed to return to work.They were definitely pushing tough love. I told my friends this and they and my husband all feel that I should be heading back to work.

I don’t think I am safe- I have a diabetic student and I had an issue with his pump and messed up the numbers- if I wasn’t supervised this could have been really bad. The other day in the office when turning from a student to answer the phone the room started spinning- an old symptom that sometimes comes back. I told OT this and she said it was fine because the spinning quickly went away.

It seems suddenly I should be fine and I should be all wonderful. And although I am so much better- I know I’m not 💯.

Anyone feel like their being pushed and not believed??

Thx for listening

Dawn

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cat3 profile image
cat3

Don't let anyone push you beyond limits you feel to be unsafe. Theoretical judgement is no substitute for our own experience of the body we inhabit and the subtleties & changes only we are able to recognise.

And the welfare of others isn't a responsibility for someone who admits to dizzy spells and impaired judgement. All very well that you're supervised, but a mistake by you combined with a blasé moment on the part of the supervisor has the potential for serious consequences.

Get an assessment from a neuropsychologist before committing to duties you're uncomfortable with and, If deficits are found, you'll at least have some official backing. I thought the mantra in the medical profession was 'First do no harm'. Please don't be coerced into anything Dawn until you feel fully able. Cat x

Lynd profile image
Lynd in reply to cat3

As a carer /supporter of my Husband who has BI I am so guilty of this.

Sometimes he does so well and I forget his limitations and expect too much.

cat3 profile image
cat3 in reply to Lynd

I think pushing by loved ones is invariably well intentioned, especially as we (BI-ers) often seriously lack motivation and energy. And for carers it can be SO upsetting seeing decline in someone they care about.

Most of us here have had our lives waylaid by brain injury with no warning/preparation and have had to learn coping methods virtually overnight. We just do our best with little or no external support to find what works best all round. And from what I've seen so far Denise, you're doing a great job.

I know your dental work is due soon so let me know when the time comes so I can cheer you on ! 😮 Cat xx

fitz5392 profile image
fitz5392 in reply to Lynd

For the BI person tough love can be tough especially when you feel like no one gets it. The stupid thing about a BI is1.no one can see the issues it’s not like you are limping around or a body part is swollen so it makes it difficult to believe sometimes and 2. Everyone’s symptoms are different because different parts of the brain are effected. That fact that you may be aware of this - get some big spouse points 👍👍 good luck and thank i!

fitz5392 profile image
fitz5392 in reply to cat3

Thank you for the support!! I actually had a neuropsych evah that said I had processing issues. I think they just want to discharge and be done. Gonna keep fighting tho. Thanks so much!

cirrus profile image
cirrus

Blimey Dawn, that sounds so stressful. Yes I can absolutely relate to what you say. I have processing issues, though more with hearing and thinking. There are some things that I just cannot be trusted to do correctly without someone checking me, numbers especially. That sounds so dramatic, but it is as you describe, and soemties it really matters. My thinkin is just not 100% reliable. It is not a confidence issue on my part as I was so often told, the loss of some confidence came AFTER i realsied I had these issues and I was not pereftly fine. As you say, being realistic and asking for adjustmetns/allowances is often seen as having a negative attitide :( Its tough.

You are being really repsonsible though nd doing the right thing for your patients so don't let them railroad you. And they aren't going to be the ones in toruble if something goes wrong.

I agree with Cat, ppush for some neuropsych testing. I got some eventually and it showed deficits even quite few years later so that helps to explain to epople. Also ask for balance/ear testing. I had trouble for YEARS but was alwyas told it was just anxiety, but eventually a Dr took me seriously and tests showed inner ear damage. Not a surprise ot me as I had other damage to my snese of smell so why not ears/brain. I had nearly driven myself mad trying to fix my balance with postivie thinking etc (but thinking all the time there was somethign wrong), but of course I coudln't fix it as it was physical. And stress made t worse as I owuld decompensate, and have vision issues.

It can be hard for people to grasp how even 'small' deficits affect us in everyday life and that while things can often be worked round, even to the extent that other people don't notice, it isn't the same as everything working 100%. That can be hard ot deal with.

Stay strong though, you aren;t the only one affected this way. I often jut browse this board and while I wish no one had difficutlies at all, it is helpful to see tht it isn't just me x

apolgies for my typing x

fitz5392 profile image
fitz5392 in reply to cirrus

I did get a neuropsych eval that said I had processing issues. I think they just want to be done ugh! I too have really bad issues with math! I downloaded some math apps and flash cards on my phone to try and work on my speed and processing skills. Hope this helps you too and have a good day! Thank u- so nice to know we are not alone!

cirrus profile image
cirrus in reply to fitz5392

Yes, thank you it is nice t feel understood :) Yeah, they all want to clear their caseload! I think it must be tough for the caring ones though when there is just no budget to give services to anyone but the emergency cases. I do think that even the neuropsych didn't quite realise that doing tests in a quiet office still does not compare with the real world.

After a while fighting the symptoms (pre my diagnosis) just wasn't working and so I while I did have to give up my career, I decided to try other thigns I was still relatively OK at, and ended up being self-employed as it meant I coudl work around my difficutlies a bit better and not always have to explain etc. Then other things came up and even that was too hard. I could do certain very part time things in the right circs but we have other complciations so that isn;t possible right now but maybe one day. I live in hope! It def won't invovle maths or writing though!

Hoep you have a lvoely bank holiday and enjoy some sunshine. Oh, thats a point get them to check your Vit D, iron and thyroid justt to be sure :)

Take care evreyone x

blackperil profile image
blackperil

It’s so frustrating, all these specialist and in the end it is down to us to say whether we feel safe or not.

The last OH review I had just asked me what I thought I could do. Very hard not to talk yourself out of a job and income.

You may also find that you become hyper sensitive to it as a reaction to being asked about it and your response not being understood.

Try and find your local neuropsych / head trauma unit and get a referral. From my experience PCS isn’t taken seriously so you may need to fight your GP for a referral. I am issuing you are in the UK.

My wife had to find all the info and advise our GP as the surgery had no clue. Local Headway did not know either.

The tests are a bit like Mensa IQ tests. You can also request, through OH, a work based assessment. Job centre can apparently help with this as well.

Though if you are anything like me, you want this all sorted for you like it should be.

Keep going, you will get there, where every there is.

fitz5392 profile image
fitz5392

I did get a neuropsych eval that said I had processing issues. I think they just want to be done ugh! I You are so right about the hypersensitive part- sometimes it seems like no one is listening and it’s so annoying. So glad you got some help and here’s to us getting it all figured out- fingers crossed!

SillyPhil profile image
SillyPhil

No. No. No. If you don't feel ready then do not go back to work. The trouble is that everyone really WANTS you to be back to 'Normal' but you are not. You might look OK but you are not. Sometimes you may even feel as if you are back to normal but the chances are that you are not. I'm 20+ years post accident and I still cannot work. It is just too much for my brain to deal with. OT's really have no idea. Their job is to push you. But the best advice is to take it really slowly, learn your limitations and do what you can WITHOUT pushing too hard and setting yourself up for failure x

LouBL0u profile image
LouBL0u

Hi I'm new to this sight, but a friendly hello to everyone.

I had a fall and was out for 20-30 minutes and diagnossed with post concussion syndrome, had 3 weeks off work, then returned to work. I felt almost Euphoric but then a colleague contacted my boss to say "I wasn't myself" This was in November! Subsequently, I'm still off work as I received a diagnosis of Functional Neurological Disorder... Going to the FND websites has really helped me as currently medical care is very patchy. I still have issues with speech (sometimes can't talk but mainly stumbling, losing words) Processing - I had to teach myself to make a cup of tea by breaking it into the steps, couldn't count in my head in the beginning but can now do "hard maths" lol. Fatigue, headaches, pain, concentration, memory. OH have said I'm not fit for work but I'm hoping I can get the right re-hab...

My condition fluctuates day to day, noise is a big trigger and I have an exaggerated startle response (my daughter unexpectedly blew a whistle and the only words to come out were swear words and I'm not a swearer) but in the right, calm environment, it looks like I'm really OK?!

Take care everyone

LoubL0u

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