Starting my third year of seizures - Epilepsy Action

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Starting my third year of seizures

raelynn15 profile image

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.

100 Replies

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

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

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

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

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

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

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.

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

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

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

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

Is anything working

I don’t have Snapchat or anything

Okie dokie how are you feeling atm

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

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

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

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

My husband and my whole family are aware

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

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

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

When was your first seizure?

When I was 3

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

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

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

Do you have wattsapp

Do they know why you have them?

Nope drs are unsure

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

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

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.

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

No I haven’t yet

That’s good

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

Do you have any advice for me?

Never give up and your never alone in this fight

I have no self confidence right now :(

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

I’ve got an idea

What’s your idea?

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

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

Ok do you mind me asking how old are you

Twenty six

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

This is fine with me

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

Just typing if that’s alright

Yh that’s fine

Right do u know any of your triggers so far

Okay thank you so how are your seizures mostly?

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

I have that too

Aww ok did they do the hyperventilation test with you

What’s that

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

Are you ok

Yes sorry my daughter woke up

Aww is she ok

No we haven’t done that yet

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

You ok

Yes and yes I would thank you

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

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

Aww yh

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

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

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

Okie dokie night night


Hey how are you you ok

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

Aww yh do u have seizures in your sleep


Do you think you could of had one in your sleep

Would I remember it?

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

Then I probably did

aww how are you feeling now

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

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

Yeah my mouth is really sore

is their a wet or bloody patch on your pillow

It was wet

aww it sounds like you did have one

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

I can’t stop crying

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

Hey is everything ok are you there

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

Where abouts is the pain or where are you hurting

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

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

On Saturday and no

My husband said it sounds like my sciatic nerve

Hi Raelynn,

Just wondering if you are taking Lamotrigine(lamictil)?

I just came across your post and it really struck me how similar your situation is to what mine was. I actually had an allergic reaction to that drug so now I am on another.

How are you doing? Is it temperal lobe epilepsy that you have?

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