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Epilepsy Action
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Starting my third year of seizures

I had my first seizure at the age of 24 on New Year’s Day 2016. Since then I’ve been in the ICU numerous times for grand and petite mal seizures. Before I had my first grand mal seizure, I would sometimes get intense feelings of dejavu and feel as if I’m underwater. No known cause has been determined and I’ve been diagnosed with epilepsy. I’m beginning to get very depressed and have no confidence to be by myself or to take care of my daughter alone. I’m currently on lamictal 100mg twice a day. If anyone has any advice or support please respond to my post. Thank you.

99 Replies
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Hey how are you I’m Matthew I’m 21 I know how it feels it makes you feel depressed and it sucks I suffer from absences, jerks and tonic clonics and I’m always here if you ever need or want to talk or anything

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I suffer from those as well! I didn’t have my first one until 24

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Awww how often are you have seizures atm and how old are you now if you don’t mind me asking

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I’m 26 now. I have the small ones randomly, it feels like the most intense dejavu I’ve ever felt and I can’t talk or move

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Aww ok do you know when your last one was and I’ve sent you a private message thing and I’m always here if you ever need to talk or anything what’s medication are you on I’m on keppra

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I can’t talk or move either itscares me I hate it

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Yeah I just had seven on Friday and was in the hospital until Saturday evening. I’m on lamictal I can’t take Keppra it makes me way too angry.

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Aww how are you feeling atm seizure wise and do you have Snapchat or anything and is the lamictal taking any affect or working

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And have you received my private message I’ve sent you

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It won’t let me open the private messages idk why

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Hmm try following me on here see if that works or try sending me a message

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Is anything working

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I don’t have Snapchat or anything

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Okie dokie how are you feeling atm

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Not great I have a really bad headache and back ache from where I hurt myself having seizures Friday

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Aww do you get auras or warnings for you seizures and have you told anyone

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Yes for some of them I do and other times I wake up in the hospital and find out I’ve been there for a week

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Aww ok are you getting any auras or warnings now and and they always with you or are you sometimes alone

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My husband and my whole family are aware

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No mainly what feels bad right now is recovering from the seven on Friday

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I live right beside my grandparents and my mom. Someone is always in constant contact with me bc I have a three and a half year old daughter as well that I stay home with

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Aww ok if you ever need or want to talk or anything I’m always here or if u get an aura or warning feel free to message me are u in the uk or us

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When was your first seizure?

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When I was 3

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Lamictal seemed to be working for six months before these most recent ones

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I’m in the US but I spent the first five years of my life in the UK bc my father was in the military

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Ooh cool and do you have any type of seizures daily or are they just random

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Do you have wattsapp

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Do they know why you have them?

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Nope drs are unsure

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Mine are just random. Sometimes big grand mals, sometimes just the few secs of dejavu and confusion

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Aww ok have u had any more seizures since those was in hospital

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Drs are unsure with me too. First I was told it was stress related then I was told pseudo seizures now I’m being told that I’m epileptic. I’m so confused and scared and overwhelmed. I have a great support system and family but they don’t really understand what it feels like though.

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Aww I know the feeling my mum and dad are brilliant but they don’t understand or get how it feels and stuff I’m 21 btw

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No I haven’t yet

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That’s good

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If u think or know your going to message me if you can

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Do you have any advice for me?

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Never give up and your never alone in this fight

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I have no self confidence right now :(

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Awww you can do this u can I know it’s hard and it sucks but u can fight this ok your stronger and better than epilepsy u can beat it

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I’ve got an idea

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What’s your idea?

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Would you like me to try and help you like through the seizures and help you find what your triggers are and stuff if you haven’t already

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I’ll take any help I can find right now. They have been going on for two and a half years now and I’m still at a loss

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Ok do you mind me asking how old are you

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Twenty six

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Ooh not that older than me then would you be willing to download or get wattsapp or Skype or anything or not idm just thinking if it’s easier

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This is fine with me

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Ok would you be ok if I give you mine number so we can call or would you prefer just typing for now

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Just typing if that’s alright

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Yh that’s fine

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Right do u know any of your triggers so far

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Okay thank you so how are your seizures mostly?

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Their ok ish it’s just the absence and jerks which are being a pain

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I have that too

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Aww ok did they do the hyperventilation test with you

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What’s that

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Well they iether do the flashing light thing or they get you to basically hyperventilate to see if their triggerid by exercise

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Are you ok

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Yes sorry my daughter woke up

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Aww is she ok

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No we haven’t done that yet

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Okie dokie would you be willing or able to when or if you get an aura or a warning to message me because sometime you can get people out of the seizure

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You ok

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Yes and yes I would thank you

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Ok good and hopefully i can hopefully try and get you out of the seizure by distracting you and talking to u

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Yes she’s okay she’s just had a long weekend

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Aww yh

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I’m about to go to sleep but I will message you tomorrow thank you again for all of your support

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Okie dokie night night I’m here if you need anything or want to talk

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Goodnight and thank you I will message you tomorrow to discuss this some more

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Okie dokie night night

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Hey!

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Hey how are you you ok

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Do you ever have a lot of back pain? I can hardly walk this morning

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Aww yh do u have seizures in your sleep

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Yes

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Do you think you could of had one in your sleep

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Would I remember it?

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Some do some don’t but if your feeling achy or if you’ve bit your toungeor anything their good indicators that u might of had one

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Then I probably did

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aww how are you feeling now

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My leg is just hurting so bad and feels like it’s aslee

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aww ok what they a wet patch on your pillow or is your tounge or gums sore

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Yeah my mouth is really sore

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is their a wet or bloody patch on your pillow

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It was wet

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aww it sounds like you did have one

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how are you feeling atm have you had or got any auras or warning recently

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I can’t stop crying

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awww im always here can i do anything to help would you like me to call you or anything im always here i promise

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Hey is everything ok are you there

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No I can’t sleep bc I’m in so much pain

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Where abouts is the pain or where are you hurting

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In my back and down my right leg and in my tenples

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Aww when was your last seizure and is your leg swollen or red or anything

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On Saturday and no

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My husband said it sounds like my sciatic nerve

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