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Epilepsy Research UK
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Life changing 😞

Hi I’m Dave and have never really thought about talking like this to people I don’t know but it may hopefully help me. I’ve been having seizures for about 10 years now but over the past 12 months these seem to have got worse. I was only getting maybe 3-4 a year where as now that seems to have doubled. I understand other people probably suffer a lot worse than me so I hope no one things this is a bit patronising. What is hard for me is that after a long day at work I’ve always liked to go and enjoy a few pints with my friends which I’m really struggling to pull away from as I’ve always enjoyed that after a long day. I’ll go to the football at the weekend and have a few pints because I enjoy it and never go ott. A few weeks ago I suffered probably my worst experience yet. I woke up one morning and knew something wasn’t right so I rang my boss and told him I wouldn’t be in. I remember going back upstairs and the next thing I vaguely remember is been in my back garden and locked out of my house with both side gates locked and both back doors locked so can only assume I have fell out of my bedroom window somehow. I ended up smashing a window and breaking in to my house. The rest of the day is a bit of a blur but the next day I was struggling to walk and my girlfriend took me to hospital where fortunately I had done no serious damage. The big issue I have now is I find my daughter is very very scared of been alone with me which is heartbreaking for me. I still find myself going for a few pints after work though as it’s what I’ve always done and is a routine. Now my confidence has dropped and I seem to always be worrying. At work I’ll maybe forget something and thing did something happen?! I’m hoping someone on here will maybe of lead or lead a similar life to me and can help with there experiences. Thank you to anyone who takes time to read this and maybe help me in some way.

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Hey Dave, stay strong buddy. I’m 41 and only started having seizures last October, I’m still at the stage of monthly tonic clinic seizures and testing and trying out different meds, have you been back in touch with epilepsy nurse or neurologist? Maybe new meds or change in meds? I totally get the confidence thing my has 100% dropped so am struggling with that, I don’t have kids so can’t comprehend how you must be feeling, my only situation is the change of some friends attitudes towards me and how they no longer ask me to baby sit 🤷🏼‍♂️ I hope the best for you and your family, I look forward to reading your updates as to things improving for you 🤓👍🏽

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Hi Dave, having gone through all that did your neurologist increase or discuss in changing your meds? If not maybe you need to discuss your options! It will be hard for your daughter but hopefully she’ll grow to understand.

My daughter won’t talk about my past seizures, especially one which had a big impact on all of us- it was SHIT.

For the last 7 years I have been changing medications, one didn’t work added an additional, still had small seizures dropped the other then started another & now ok , hopefully. It takes time to find the right balance. Currently on Keppra, Zonisamide & Clobazam. Plus Vit B6 to help with Keppra side effects. Yoga helps & yes I enjoy my glass of wine & G&T but don’t go over the top.

Don’t be hard on yourself, your friends are there for you plus family. Take care. X. SJ

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Hey guys thank you for taking the time to respond. I recently saw a specialist nurse for the first time and she was amazing!! Me and Lou went to see her and some of the things she explained and told me were amazing and I was stunned on some of the stuff I wasn’t told in 10 years!! Even small things like my prescriptions are free and I can get a free bus pass!! These may sound like silly things but after losing my license due to my epilepsy the bus and medication has cost me a lot of money in that time!! She also changed my medication so fingers crossed this will make a big change I can only hope. It’s a real comfort to me that people in similar situations have took a few minutes of there time to respond to me and that in itself I feel has gave me a bit more confidence!! So off to the pub at 12 with the lads lol (joking) although I will be enjoying a pint with me old man later today as my family and friends have been amazing which I realise I’m very lucky to have!! Thanks again guys take care.

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Very welcome Dave, can’t believe you weren’t made aware about prescriptions n bus passes, are you aware you may qualify for paid taxis to and from work and maybe PIP? I’ve just applied for both but awaiting a outcome at the moment, buses in my area are a pain & just for one way travel as can’t use bus pass at 7am are costing me £87 per month, glad you feel slightly better, enjoy your pint n give any of us a shout if you need a bit of support 🤓👍🏽

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Really!!! Paid taxis & free bus pass! And PIP never heard of 😄 Don’t get any of that free where I live 🙁.

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Real shame SJ, where are you?

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ChAnnel Islands 😎😄

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I've got the free bus pass, though I can't use it before 9.30am which is at peak time! So that's a bit of a con! I do however use a taxi to and from work which the government pay the majority of the fare for me. I tried getting PIP but was declined.

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I will have a proper look in to all this, this week. How do you claim the taxi fair money cos like you said the bus pass is no good to me if it can’t be used before 9.30 I’m in work at 8.

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To claim/apply for the taxi, you have to contact Access To Work, which is part of the DWP.

If they agree that you are entitled to use this service, you will then have to fill in the forms once every month to claim back the taxi fare etc.

You will also to begin with, have to get 3 quotes from taxi firms for the journey each day, of which, the DWP will pick the cheapest, obviously.

But type in Access To Work into Google, it'll tell you much more about it on there.

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Appeal your PIP they count on you giving up 👍🏽

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I gave up, I had too much going on at the time anyway due to my epilepsy, such as a disability discrimination tribunal.

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What is PIP?

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Personal Independence Payment mate

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Well I’ve had a top day with my old man and a brilliant dinner and I’m chilling watching the snooker so the responses to me today have gave me a load of help so thank you all

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Feeling good today guys this has helped me more than I thought and when the mighty foxes get a result tonight I’ll be on my way to work tomorrow with a big smile on my face 😃 🦊

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Good Luck to you, and the Mighty Foxes! Hope you can claim some of your money back too. Sure your daughter will learn to accept the way you are in time. How old is she? Depending on that, perhaps the more you can explain to her, and keep her informed about your condition, the more she will begin to understand as she gets older. I hope so and wish you luck with everything.

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She’s 17 later this year and we’ve spoke about it in detail and as you say hopefully over time she’ll be ok. Shame about last night but I’ve no complaints with a rocket like that!! Back to work today but 4 weeks today I’ll be on a plane on my jolly’s with Lou

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Hey mate, who you using for travel insurance? I had quote to go see a mate in Australia n was quoted £650 for 3 weeks cover although I am having monthly seizures at moment 🤷🏼‍♂️

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Hello, you can get cheaper tickets for train travel too. My heart goes out to you reading the above. My kids ( 3 of them) have had to deal with it all too, not easy....but you’re definitely doing the right thing being upfront and talking. You’ve got some good advice above, I too am surprised it’s been so long coming but now, great! I’m 67 and have coping since brain ops caused problems since I was 31 so I guess I’m used to it but it’s hard at times. You’re doing well, keep using those professionals, that’s why they’re there, ask questions.....and more questions, you’re the important one!

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Hiya Dave,

Hope things are going well. Did you get to the bottom of whether you had fallen out of the window? I ask because I have temporal lobe seizures during which I lose my memory and walk a repeated circuit 4 or 5 times round the house, asking my wife the same question over and over, but have no memory of any of it all. Did you have any bruises? I know you said you had problems walking the following day, but I feel like I've been hit by a bus after a seizure and my whole body aches. I never did anything dangerous, just wandered as if I was just about to do a household chore, but on repeat.

Re: Alcohol is problematic, if I do get carried away and drink too much (enough to have a hangover) then the chances of a seizure goes up significantly, so you don't have to stop, but take it easy. I also find it does not mix well with Lamotrigine without stripping the lining of my stomach, so if I am going to have a drink I have to take a strong indigestion tablet.

Stay well,

John

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Hi John,

I’m ok thanks. I’ll probably never know one way or the other exactly what happened as I’ve no memory whatsoever about it. The fact I was in the garden with every hate and door locked it’s the only explanation I can think off. I had a few bruises but nothing like I’d of thought falling from that height. I’m the same though after I have a seizure and forget everything that’s happened for 2-3 days after I ache all over. I’ve cut back on my drinking to although was an idiot last weekend when out with the lads and Lou told me exactly her thoughts on it and I can’t blame her when I act like that. Not drank since though but I’m a little worried today as don’t feel 100% right but hopefully nothing will occur. I’m at work at min but I’ll be finishing ASAP. I’d like to head to the gym after but whether that’s a good idea I’m not sure. I’m also fuming with the drs as I ordered my medication 2 weeks ago as I knew I was going away on the 4/6 yet when I went to collect yesterday apparently the supplier has a problem with one of the prescriptions and they only had a weeks worth for me plus they got dosages wrong on lamotrigine. I’ve told them I need it sorting by Tuesday latest as I had no contact from them about the delay!! Thanks for the concern mate. Take care.

Dave

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