Been a while

It's been three months since I last wrote on here, and what a three months of pure crazy it has been.

Firstly I was successful in my PIP appeal, they have even given me a little more as they finally realised I'm not going to suddenly get better!! I am also now getting ESA after leaving my job, I have been struggling with not working and being heart broken at having to leave a job I loved so much. But the stress was getting to much and the back stabbing, two faced folk would have sent me to an early grave!!! I am soooooo bored not working so I decided to foster a Romanian stray, seemed a great idea........ until two days before his arrival I had a seizure in a branch of my local Spud - U - Like Thankfully I had eaten all food purchased). I had no idea it was coming and to be honest no idea it had happened, I just vaugely remember being wheeled out of the shopping mall on a trolley and take to A&E. I had been complaining of brain zaps for a week beforehand, I spoke to a GP about it and said I was worried it could be seizure warnings and she said it wasn't likely and made me feel like a complete tit!!! Lets just say I won't be talking to her again ....... EVER.

So I have seen a neurologist who has diagnosed a generalised convulsion secondary to TBI, I have been given some anti-convulsant meds and had to surrender my drivers licence...... again. This neurologist feels that the TIA scare I had in Feb this year and my sporadic speech issues are due to abcenses/ seizures. I am trying my hardest not to let this setback stop me living, but its really hard. I'm not obssessing about having another seizure but it is alwats at the back of my mind. I managed to go 2 years without having one, only to be floored by my first one.

Has anyone else suffered seizures after TBI?

I can officially say brain injury sucks bottoms and I don't like it one bit!!!!

Anyhoo, foster dog is here and hes lovely. Hope everyone else is doing well xxx

12 Replies

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  • Good to see you back Jenna and well done for getting your finances sorted. Maybe you could consider part-time work or something voluntary to keep yourself occupied ?

    Sorry to hear about the seizure coming out of the blue ; how demoralising after two years ; just when you think it's all over....................

    I think you'll find there are quite a few folk here who are left with seizures since their BI ; it was one of the issues I was asked to look out for after the SAH, but fortunately one which I escaped.

    The dog adoption is, I believe, a really good move. I'd love a dog but it'd be impractical for me. But if circumstances were right, I'd absolutely love a cheeky Border Terrier ; I'd give it so much love and 'walkies' !! :-/

    Hope you'll find something fulfilling workwise.

    Love Cat xx

  • Yup I'm totally bummed out by this most recent episode, once I know the meds are working I will definately volunteer somewhere. I had planned to start looking the week after the seizure (planned before seizure, if that makes sense). But it floored me and has set my confidence back, but I am determined to carry on.

    xxx

  • Best wishes for success with the meds Jenna. Well done for the positive attitude ; it's the surest way to get past/through/over all those 'surprise' obstacles.

    Fingers crossed. Love Cat xx

  • not sure what i get jenna, at first it was like having vertigo id go hot the room would start spinning and excuse me id sick both ends and sleep for hours after.

    now theyre different i get no warning and usually happen at home when im sat in my chair ( except the one i had in the hotel dining room the day of my mum in laws funeral ) lasts longer no nausia but still sleep for hours.

    i take 800mg epilim twice a day but thats used as a behavioural med.

    i have an abi due to a stroke which affected my frontal lobe.

    pleased to hear you got your pip and esa.

    as far as your back stabbers are concerned, if they knew the effort it takes to motivate ourselves each day and how quickly we become so fatigued well

  • Hi Jenna,

    Brain injury sucks bottoms now thats my kind of humour, thank you for making me laugh on a wet Tuesday morning.

    I have a friend who gets seizures and he always knows when there coming on he's got full blown epilepsy and has nothing to do with Bi but its very scary for him as I'm sure it is for you. My heart goes out to you and I'm praying it will pass for you too.

    Its a fantastic thing to adopt a dog, we have 2 chocolate labs coco and toffee and they are part of the family. No I didn't name them the kids did I want ed to call them Hannah and Bruce but was voted down by the kids and my wife. Dogs are great to have as they are friendly and loyal and you can walk them too.

    Wishing you a fantastic Tuesday Jenna. XX N

  • Glad I made you chortle :)

    I also have a friend who has epilepsy and she gets warnings and can make herself safe, I had nothing I felt the best I'd felt for a long time!!!

    My dogs are what keeps me going, I have another Romanian called Fun a crazy Jack Russell cross called Sophie and Romanian foster is called Pom. I chose none of those names but they suit the dogs themselves.

    Happy Tuesday to you too x

  • mxman yeh sounds like a british prime minister but we wont go there hahaha

  • Hi there, good to hear that you're getting on with life! Give the pooch a cuddle from the Baron please.

    Yes, I have full blown post BI epilepsy and it generally 'sucks bottoms' every day of my life, in the form of the medication I take to stave off the seizures. My first generalised seizure was nine months after the head clobbering incident. It knocked me sideways, backwards and any which way but forwards. The seizures then turned up in my life approximately every 6-8 weeks, arriving like the unwanted guest at a party, until finally (after a long and fraught search) a medication that suited my needs was found. That was seventeen years ago and (touch wood, cross fingers and legs) there have been no further generalised seizures.

    I still have the occasional partial seizure. Frankly, I can live with that and I'm more than happy to have them in my life as opposed to those generalised demons. It's swings and roundabouts really. Medication, side effects and partial seizures, or generalised seizures that knocked me bandy for days on end and essentially stole my independence...

    Medication wins EVERY time.

    Good luck and if you need ANY advice, don't hesitate to ask.

    Baron/Andy

  • Cuddle has been issued to said doggie, he thanks you for that :)

    Good to hear the meds work for you. I have a friend who is epileptic (not due to BI) and she suggested I steer clear of anti-convulsant drugs because of the side effects, but I am willing to accept the side effects in place of another seizure; cos it scared the hell outta me. I have been taking a low dose for a week and a half and so far no side effects (touches wood). I'm a bit miffed as I was just building my confidence to go out on my own again and now I'm wary. Next time I may not be so lucky, my epileptic chum was robbed during one of her massive seizures :(

    Thankfully the neurologist issued the meds straight away due to my history of broken brain, he said if it wasn't for that I would have to have another seizure before they investigated fully.

    Thanks for replying B x

  • Let me guess...

    Epilim?

  • Lamotrigine, so far so good :)

    We shall see when the dosage is increased

  • Gotcha. Don't be afraid to raise ANY issues you might have regarding side effects

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