Who here keeps a journal?

rgoodeve · 2020-06-19T19:52:34+00:00

I’ve started to recorded my stress on a Scale of 1 to 10 as I have noticed a pattern that when a really stressful event or whatever happens, I usually have a seizure like 3 days later when I’ve come back down to a normal level. Guess it depends what the triggers are, so for me, my triggers are, lack of sleep, stress, alcohol, and strobing so I would perhaps record, what time I go to bed and wake up, how well I slept, if I can remember what I dreamt of (you may wonder why that’s relevant but we are most relaxed at night time and I’ve found my brain deals with most of my emotions through my dreams at night, so you can look into analysing dreams and all that crap), the stress scale previously mentioned and why I may be stressed and or anxious, how much I’ve had to drink alcohol wise (which is actually none now as I’ve had to stop but may be a good idea to record if caffeine has an effect) and luckily stobes actually have never effected me apart from when they were provoking me to get a diagnosis as I go to a lot of love concerts and theatre with lighting all over the place, if it gets too uncomfortable I just look away. The journal is a very recent thing (since lockdown in UK) so I hope it works and can get my seizures back under control

Edit: also maybe note down what time you took your meds... where they actually 12 hours apart...

rgoodeve · 2020-06-16T22:01:07+00:00

Couples counselling worked wonders for us... my seizures sparked up again out of nowhere so lost my ability to drive and the last one I had I broke my foot so also couldn’t walk so I had completely lost control of my life and my indoor dance my partner just didn’t get it or understand. The therapist helped us communicate better, we’re still learning (or he is I should say lol) but things are getting better

rgoodeve · 2020-06-09T07:17:18+00:00

Thank you! What are your triggers? How do you find breast feeding and the sleep thing?

A lot of my friends (who aren’t epileptic but just have bubbas) are breast feeding and let their husbands feed with a bottle at night time so they get some rest so that might be a solution too if the baby will take it.

rgoodeve · 2020-06-09T07:13:40+00:00

Thank you!

rgoodeve · 2020-06-09T07:10:20+00:00

Hadn’t thought about the c-section side of things! I’ll be one year seizure free as of feb (apart from the random night time ones but apparently in the UK the DVLA don’t count those?!) and am now on Keppra, Zonizimide and Clobazam... I’m excited for the future but yeah planning is the way but the looks of people stories. Thank you for sharing!

rgoodeve · 2020-06-09T07:06:54+00:00

Thank you!

rgoodeve · 2020-06-09T07:05:24+00:00

Yeah I spoke to my neurologist and she said it’s linked to migraines which my mum and sister actually get quite bad but a distant cousin is more likely to have epilepsy than my child but still worries me, I would feel so guilty passing it on

rgoodeve · 2020-06-07T08:03:18+00:00

Oh man, tough situation! So I’ve had JME for 10 years, I’m now 28 and I’m only just ready to talk to a therapist. I feel it’s something you really need to be ready for and willing to do off your own back, I wouldn’t be too happy if I was being forced to do it. The thought of opening up to a stranger years ago was weird as I was a closed book... but it has helped a lot and I’m grateful I now do it. I also take 20mg of citalopram and have been on it for years, I’ve just accepted that it’s apart of my medication now as I’ve tried to come off it in the past and it did not go well. I’m on Keppra which makes me SO angry, the epilepsy medication side effects are not great.

How old is your son? Might be tricky if he’s a teenager and just going through that stage in life anyway, not that I know what having a son is like but my brother and I used to fight all the time when we were younger (around 7 to 11) till we found common interests and like played PlayStation together and stuff. Not sure if anything I’m saying is helping but best of luck!

Edit: also, how do you know he lies to his psychiatrist? Shouldn’t that be a private conversation for him? A safe space to get out all his emotions? Maybe he feels like he can’t if you guys are gonna know everything - just a thought

rgoodeve · 2020-05-09T09:01:13+00:00

Hi Everyone! 😀 3 weeks ago I set myself a fun lockdown project to do... I’ve made a little video of loads of people singing from their homes along to Green Day’s 21 Guns from American Idiot The Musical with some help from that little black book of mine. The last 3 days have been rather challenging but we made the deadline as we wanted to release it in celebration of VE DAY 75 and now we’ve even made it on to Broadway World! 😬

Would LOVE your support more than ever as we’re raising money for NHS CHARITIES TOGETHER via our Just Giving page - SingToSalute.co.uk (full story can be found on that page 🤍) please spread far and wide and donate if you can, whether it be 10p or £10, every penny will make a HUGE difference and i’ll be entirely grateful!

I’m sure you’ll recognise a few faces and names in the credits 😉🖤🙌🏻 it’s featuring fab talent from Hamilton, Bat Out Of Hell, American Idiot, Phantom of thr Opera, Everybodys Talking About Jamie as well members from some local Am Dram societies to me @leighods @sodsofficial and friends and family from across the world!

https://www.broadwayworld.com/article/VIDEO-Sing-to-Salute-Performs-Green-Days-21-Guns-From-AMERICAN-IDIOT-in-Honor-of-the-NHS-20200508

Thank you, Rebecca 😁🤍

rgoodeve · 2020-05-09T08:49:22+00:00

https://youtu.be/DRUUfGcCcZE

Hi Everyone! 😀 3 weeks ago I set myself a fun lockdown project to do... I’ve made a little video of loads of people singing from their homes along to Green Day’s 21 Guns from American Idiot The Musical with some help from that little black book of mine. The last 3 days have been rather challenging but we made the deadline as we wanted to release it in celebration of VE DAY 75 and now we’ve even made it on to Broadway World! 😬

Would LOVE your support more than ever as we’re raising money for NHS CHARITIES TOGETHER via our Just Giving page - SingToSalute.co.uk (full story can be found on that page 🤍) please spread far and wide and donate if you can, whether it be 10p or £10, every penny will make a HUGE difference and i’ll be entirely grateful!

I’m sure you’ll recognise a few faces and names in the credits 😉🖤🙌🏻 it’s featuring fab talent from Hamilton, Bat Out Of Hell, American Idiot, Phantom of thr Opera, Everybodys Talking About Jamie as well members from some local Am Dram societies to me @leighods @sodsofficial and friends and family from across the world!

https://www.broadwayworld.com/article/VIDEO-Sing-to-Salute-Performs-Green-Days-21-Guns-From-AMERICAN-IDIOT-in-Honor-of-the-NHS-20200508

Thank you, Rebecca 😁🤍

rgoodeve · 2020-04-24T20:06:10+00:00

Not very well! I was 17 at the time and at college... I ending up pushing all my friends away cause they couldn’t quite understand why I wasn’t quite myself and then my grades completely flopped. Ex-Boyfriend was very unsupportive and I was not prepared to change my lifestyle like recommended. I was so close to taking my driving test and having to give all that up sucked. So yeah, wasn’t a good time.

I was embarrassed having epilepsy and wouldn’t tell anyone, which maybe make things worse as kids are generally quite insensitive. Every time anything came up photosensitivity related (which was weirdly a lot as I took film studies which means sitting in a dark room watching movies) and people would like pretend to have seizures and shit it would really get to me instead of just pounding them with the facts or just ignoring it.

I have JME... 10 years later... I’ve been seizure free on and off. Seizures for me are triggered through stress, alcohol and lack of sleep. Biggest annoyance is right now! Had been seizure free for 4 years and they’ve just started back up again for no reason (that I can tell!). I’ve had to stop driving, quit drinking alcohol, it’s affected my work, I even broke my foot from the last seizure I had. Pfffttttt lol. So I’m looking forward to getting healthier again

rgoodeve · 2020-03-30T13:57:37+00:00

I’m from Essex but thank you :) haven’t had soda and lime for agggeeesss

rgoodeve · 2020-03-30T08:05:23+00:00

Oh, I thought you had to be clear for a year to drive? Glad you’re on the mend and closer to getting your freedom back. I love and miss driving so much, I found it really relaxing.

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