living with epilepsy - a flashy lifestyle for a photosensitive girl Watch

mpaprika
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hola all! I would welcome you with fireworks and flashy lights, but well.. let's be nice to everyone.

so I lied. I'm not actually photosensitive (although my EEG says I'm slightly and my mum talks of moving trees in cars) ??

Either way, some bursts of information:
I suffer from absence seizures, and I believe I've suffered from them since circa '2016. Caused by stress and lack of sleep (gcses were fun!) Either way, my grand (Mal, hehe get it) shining moment was when I had a tonic clonic seizure

at an airport.
I was unconscious for some time but had no brain damage (always good to hear). I was unconscious for 15 minutes and when the paramedics asked me what day it was I genuinely had no idea because I had been on holiday for so long I'd lost track of time.. oops

I was transported to the hospital by an ambulance (and now I have ptsd, smashing news)

There I had tests done and *cue the limelight* they said I have epilepsy

what a holiday. I will document my life and some troubles and shine a light on some good things.

Is my future bright?
I want to be a surgeon, so the hope is that my twitch as a side effect of my medication will go. I also need to change meds which is a rant for a different day, school is difficult and I struggle to concentrate in exams, and this was a major factor which hindered me in my gcses this year.

enjoy, and light it up
if ecolier saw this I would be happy
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mpaprika
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hope y'all enjoyed my light puns, if only I had that picture of thanos where it says ''and what did it take'' ''everything I had''
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mpaprika
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bump because what do I have to lose
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ecolier
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(Original post by mpaprika)
hola all! I would welcome you with fireworks and flashy lights, but well.. let's be nice to everyone.

so I lied. I'm not actually photosensitive (although my EEG says I'm slightly and my mum talks of moving trees in cars) ??

Either way, some bursts of information:
I suffer from absence seizures, and I believe I've suffered from them since circa '2016. Caused by stress and lack of sleep (gcses were fun!) Either way, my grand (Mal, hehe get it) shining moment was when I had a tonic clonic seizure

at an airport.
I was unconscious for some time but had no brain damage (always good to hear). I was unconscious for 15 minutes and when the paramedics asked me what day it was I genuinely had no idea because I had been on holiday for so long I'd lost track of time.. oops

I was transported to the hospital by an ambulance (and now I have ptsd, smashing news)

There I had tests done and *cue the limelight* they said I have epilepsy

what a holiday. I will document my life and some troubles and shine a light on some good things.

Is my future bright?
I want to be a surgeon, so the hope is that my twitch as a side effect of my medication will go. I also need to change meds which is a rant for a different day, school is difficult and I struggle to concentrate in exams, and this was a major factor which hindered me in my gcses this year.
Awwww :console: I'm so sorry to hear this

enjoy, and light it up
if ecolier saw this I would be happy
I see everything

Feel free to PM me if you wanted a chat whenever.

(Original post by mpaprika)
bump because what do I have to lose
Sorry to say this but bumping <24 hours is against TSR rules
Last edited by ecolier; 1 week ago
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mpaprika
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(Original post by ecolier)
Awwww :console: I'm so sorry to hear this



I see everything

Feel free to PM me if you wanted a chat whenever.



Sorry to say this but bumping <24 hours is against TSR rules
aha thank you, :cute: I'll keep that in mind the next time I take the wrong dosage of my medication (that was me whoops), or something goes wrong

2) Oh really? I genuinely had no idea, thanks for telling me and sorry for doing it
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ecolier
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(Original post by mpaprika)
aha thank you, :cute: I'll keep that in mind the next time I take the wrong dosage of my medication (that was me whoops), or something goes wrong
Well hopefully those two things will never happen!

Bear in mind surgery is a high-pressure environment, the work-life balance is pretty poor meaning you'll be sleep deprived and working at unsocial hours. You may also need to stand up and work continuously for many hours. Practically you'll need to consider this carefully with an increased tendency to seizures.

2) Oh really? I genuinely had no idea, thanks for telling me and sorry for doing it
No problem!
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The_Lonely_Goatherd
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Posting to subscribe
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mpaprika
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(Original post by ecolier)
Bear in mind surgery is a high-pressure environment, the work-life balance is pretty poor meaning you'll be sleep deprived and working at unsocial hours. You may also need to stand up and work continuously for many hours. Practically you'll need to consider this carefully with an increased tendency to seizures.
Yeah I suppose you're right, however would controlled absence seizures (which might be juvenile?) be a large problem? I haven't experienced a single seizure since I was put on sodium valproate (but I'm changing to Lamotrigine - something about EU regulations). My mind will probably change as I get older though, and a job as a researcher also sounds good
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mpaprika
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awh thanks! I'll tag you x
(Original post by The_Lonely_Goatherd)
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ecolier
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(Original post by mpaprika)
Yeah I suppose you're right, however would controlled absence seizures (which might be juvenile?) be a large problem?
If it's juvenile you may be OK. You'll definitely need to let med school know but it wouldn't be in the way of staying Medicine itself.

The most crucual time will be from 18-23 (i.e. your med school years!) - so whether you have a seizure then would probable lead to the classification of the seizure.

I haven't experienced a single seizure since I was put on sodium valproate (but I'm changing to Lamotrigine - something about EU regulations).
Definitely Sodium valproate is not good for women of child bearing age. Lamotrigine is the drug of choice in these circumstances.

My mind will probably change as I get older though, and a job as a researcher also sounds good
Big difference! Have you ever considered being a neurologist?
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mpaprika
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(Original post by ecolier)
Definitely Sodium valproate is not good for women of child bearing age. Lamotrigine is the drug of choice in these circumstances.

Big difference! Have you ever considered being a neurologist?
Had a meeting with my neurologist and he said that I'd either need to take monthly pregnancy tests at my gp, get an IUD or change medication. I'm 15 so my mum was horrified at the first two (strict, catholic and mainland European) so we decided to change medication. There are also less side effects with the new one which is even better.

Being a neurologist would be good, I could even research epilepsy and have that ''take it from me'' attitude towards people
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ecolier
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(Original post by mpaprika)
Had a meeting with my neurologist and he said that I'd either need to take monthly pregnancy tests at my gp, get an IUD or change medication. I'm 15 so my mum was horrified at the first two (strict, catholic and mainland European) so we decided to change medication.
That's a bit... over the top. Is it an adult neurologist or a paediatric neurologist?

There are also less side effects with the new one which is even better.
That is true, but sodium valproate has its advantages too - hence it's still in routine clinical use (just not for women in child-bearing age!).

Being a neurologist would be good, I could even research epilepsy and have that ''take it from me'' attitude towards people
Definitely. And a good work-life balance too!
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mpaprika
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(Original post by ecolier)
That's a bit... over the top. Is it an adult neurologist or a paediatric neurologist?
I thought so too, at least wait until I'm legal? I believe he was like a general neurologist and a paediatric nurse was also present. He said the three options were the same for every girl from the age of 10-45 (10!! contraception and pregnancy tests at 10!!)
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ecolier
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(Original post by mpaprika)
... every girl from the age of 10-45 (10!! contraception and pregnancy tests at 10!!)
Better safe than sorry I suppose. It depends on the area you live in also
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gjd800
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I'm photosensitive
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mpaprika
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do you have photosensitive epilepsy? Is it a big problem in everyday life (work, school etc). For me, in an exam a girl in front of me was nervously shaking her feet and the shaking and change of light is all I could see in my peripheral vision, and I struggled to concentrate so much
(Original post by gjd800)
I'm photosensitive
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mpaprika
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Ciao! Today I'm going on holiday so I'll update this next in the evening.

So I'm hoping there won't be a repeat of last time (:ahee:) but I am equal stressed this time. We had to get my prescriptions renewed since I'm going on holiday for a month. It was a bit of a pain because we needed a new prescription, it was busy, we needed to go to a bigger boots to get what we wanted, it was busy etc. My dad finally said he'd get it for whilst I had my dance exam and the pharmacist kept asking him if I am sexually active (fair concern I guess).
But after a 20 minute chat about me using condoms but not the pill at boots, my dad finally got the goods.

I don't know how much they gave us, but the packaging is taking up a LOT of space in my mum's carry on, and it looks a bit like we're transporting illegal drugs (we're not obviously - just going to clarify that )

HOWEVER, my epi pen in the event of a seizure (something beginning with M - no idea, sorry to you enthusiasts) has travelling restrictions. I'm thinking it's more UK-USA or UK-UAE but my mum seems to think they'll take it away in France (maybe?) Either way she stormed the house yesterday looking for prescriptions and proof I have epilepsy just so we don't get detained and possibly arrested

You'll find out more later
Light it up

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xoxAngel_Kxox
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My partner has epilepsy and has both grand mal fits and absence seizures - though he's adamant he doesn't get those. Either he does, or he just zones out when I'm speaking to him in the morning, regularly! It's a possibility I suppose..

His fits are almost completely controlled by Epilim, and because he only ever has them upon waking (approx 2-3 a year) it doesn't affect his driving, as he's never ever had one more than 10 mins after waking. So that's good at least.

The reason he still has some fits is because he completely ignores the "don't drink much alcohol" rule. Whenever he has one it's always because he's been drinking a lot the night before, and it messes him up. I strongly believe he wouldn't have had one for years if he didn't drink.

I hope you manage to find the right meds for you. I'm sure you will, as there are plenty you can choose from that your GP can try you with. Not all will have the same side effects so I don't think it should affect your future career choice .
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mpaprika
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Thank you! I hope your partner is doing well and will be well in the future! I'm hoping that by the time I'll be 17 I will not have experienced a seizure for 2 years, but it will still be difficult to get insurance as you have to wait a year before driving after a seizure.
(Original post by xoxAngel_Kxox)
My partner has epilepsy and has both grand mal fits and absence seizures - though he's adamant he doesn't get those. Either he does, or he just zones out when I'm speaking to him in the morning, regularly! It's a possibility I suppose..

His fits are almost completely controlled by Epilim, and because he only ever has them upon waking (approx 2-3 a year) it doesn't affect his driving, as he's never ever had one more than 10 mins after waking. So that's good at least.

The reason he still has some fits is because he completely ignores the "don't drink much alcohol" rule. Whenever he has one it's always because he's been drinking a lot the night before, and it messes him up. I strongly believe he wouldn't have had one for years if he didn't drink.

I hope you manage to find the right meds for you. I'm sure you will, as there are plenty you can choose from that your GP can try you with. Not all will have the same side effects so I don't think it should affect your future career choice .
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gjd800
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(Original post by mpaprika)
do you have photosensitive epilepsy? Is it a big problem in everyday life (work, school etc). For me, in an exam a girl in front of me was nervously shaking her feet and the shaking and change of light is all I could see in my peripheral vision, and I struggled to concentrate so much
Yes, but it is rare that it kicks off these days. I need to be careful at gigs or in bars with strobes (such a cliché!), or if I take some anti-inflammatories. But it's largely dormant for me these days, thankfully! I don't fit, I have what they call absence seizures, so I go blank and zone out, trip/fall over etc. Runs in the family.
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