Post Concussion Syndrome, Say Whaaaat?..

So as some of you know..its been a tough couple of months over here!

Following what was a minor (in terms of the cars) accident at the end of January, it turned out my head/brain soaked up all the damage and I was diagnosed with whiplash and concussion and 2 months down the line have been diagnosed with Post Concussion Syndrome (PCS). I’m sorry, what’s that now? What is this magical PCS you speak of Mr Doctor?

So off I went and did A LOT of research! After speaking to people who are also going through this and discovering the amount of people who have never heard of PCS (including myself!) I figured I would help to get it out there. To help raise awareness or help just one person who needs it!

So..In simple terms it’s a bunch of symptoms which accumulate following concussion and collectively have been named PCS. So there’s not one cure or treatment, it’s about trying to treat each symptom individually.

Potential symptoms include:

  • Headaches
  • Irritability
  • Sensitivity to light
  • Sensitivity to noise
  • Lack of concentration
  • Memory loss
  • Sleep issues
  • Fatigue
  • Feeling anxious
  • Difficulty thinking and processing
  • Dizziness
  • Nausea
  • Restlessness
  • Self control problems
  • Feeling depressed

I have 10/15 symptoms.

Its not all doom and gloom, some people recover in a couple of weeks. I’m past that unfortunately. However, sometimes it’s within 3 months, I’m still within that time frame. Though it’s looking unlikely. The downside..PCS can last 6 months plus and can even last years and some symptoms never fully go away. When I was told that, I was devastated to say the least.

To start with I thought it was just whiplash lasting a long time and was downplaying it all. But the noise intolerance has got worse, the headaches have been and still can be crippling, concentration became impossible and I had a bad memory before this but jeeese this takes the biscuit! Also there is nothing more infuriating than brain fog and not being able to get out the words you know you want to say. It has a major impact on your life, just going out for half an hour uses up all my energy. There’s been more awful days than ok days, it’s been REALLY REALLY SHIT to put it politely.

My point is, no matter how small or insignificant you think something is, don’t downplay it and don’t suffer in silence! Go and get seen, it’s better to be safe than sorry!

I got pretty down for a couple of days over everything. I have so many exciting things happening in the next few months which may have to be put on hold. I’m not me anymore and it’s been hard to come to terms with. I spend my life going to gigs..I now can’t even tolerate the sound of the kettle boiling. I have fun by going to the pub with friends or family for a couple (yeah right 😏) of, zero tolerance to alcohol, not a drop of beloved cider in 2 months! I love sunny the brightness is my bloody enemy. I’m a chatty, loud I often struggle with words. Thoughts turned to the fact that I’ve got final year exams coming up, I’ve got an internship to be a part of, everyone’s going to think (including myself) that I’m a failure if I get extensions on assignments, I finish uni soon I HAVE to start my career..and so it went on.

But I’m over the ‘this is so unfair, my life is ruined‘ stage and I’m starting to accept that this is going to take time and I’m going down every route I can to find things that make this journey easier!

I’m very lucky that I’ve been referred to specialists (neurologist and ophthalmologist) following my diagnosis..there’s lots of people I’ve heard from throughout the UK that haven’t been so lucky. I’m on some medication which seems to be slightly helping the headaches and I’m looking into more natural remedies to help further which have helped others with PCS. I’m having massage therapy as well as starting talking therapy soon and yoga has also been suggested (which I wanted to start anyway!) A major part of recovery is not pushing yourself and resting, apparently if you do too much too soon it can make recovery longer. I’m very lucky that uni have been so understanding and I’m able to rest as much as possible (although daytime t.v. is slowly destroying my soul).

A big shout out is needed here for the charity Headway. They are the UK brain injury association and can help in so many ways. They have a helpline for anyone that needs to talk to them following any kind of brain injury and they have local groups throughout the UK that brain injury sufferers can attend. On their website there’s print outs and fact sheets, help available for family members of sufferers and online communities. Plus tonnes more! They really are amazing.

There’s always someone that can help. There’s always someone to talk to.

If I’ve learnt anything the last couple of months, it’s to be kind to yourself and put your precious and very valuable health before anything!

So if you see someone out and about looking like a bag of crap, it’s likely they haven’t slept and don’t have the energy to put any slap on. If you see someone taking themselves away from a situation, it might just be too loud or overwhelming for them and they need a moment. If someone you’re talking to is struggling to get out what they want to say, give them the time they need. If someone’s just a little quieter than normal, it’s probably just a bad day.

You never know what people are going through, it might be PCS or one of the tonnes of other potential health issues that are out there, physical or mental. Just be kind to others, they might need it.

Hopefully, in the not TOO distant future, I’ll be back head banging to Metallica. Think I’ll give it a rest for a while though! 😏

If you have any questions or just want to chat about something you’re going through, go ahead! ❤

Until next time..


16 thoughts on “Post Concussion Syndrome, Say Whaaaat?..

  1. Oh babe, no wonder you’ve been so quiet! I seriously had no idea that any of these symptoms added up to something so life-changing! I think most people relate life-changing conditions to amputations etc, but little things add up to big things and they can be equally as shit! Obviously apart from it being permanent. I know I’ve said already, and at the risk of sounding like a stuck record, I really do hope you start to see some improvement soon! And if you fancy a chat/moan/whinge or anything I don’t mind you having my number! Xx

    Liked by 2 people

    1. It really is a tough condition and I’m just hoping some people read this and become more aware of it! It’s been hard getting out and worrying about what other people think because they don’t know what’s wrong. I wrote something similar (but shorter!) than this on my facebook yesterday so people in my life (who aren’t close family/friends who already know) are aware of what’s going on! It was a huge relief getting it out there, the worry was gone instantly when I saw the support people offered.
      You’re fab Steff! Thank you so much, it really means a lot! You will be my first port of call ❤❤

      Liked by 1 person

  2. This was a great post to raise awareness & share how you’ve been managing this. 10/15 symptoms is a lot to deal with & you have done so well to manage this, uni & life. I hope that these symptoms ease for you & you get some relief. Really positive to hear that you’ve been referred to Specialists & hope they go well. xx

    Liked by 1 person

  3. I’m so sorry you’ve been suffering with such horrible symptoms, they are things that other people can’t see so your friends etc would probably have assumed you were ok, not realising what you were going through. I am just one person who has never heard of it and I bet loads more haven’t, so thank you for raising awareness of it to so many people. I really hope the therapies you are having help you and gradually help you to feel better. Fiona x

    Liked by 1 person

    1. Thank you for reading! Yeah it has definitely been a challenge..and will no doubt continue to be but fingers crossed I can make recovery as pain free as possible!
      I’m pleased I could get it out there to a few more people 😊
      Thank you! I will do a post in the future with how things are going! X

      Liked by 1 person

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