I'm seizurrific :)

[seizurrific]

Hi all : )

I'm seizurrific!

A bit of personal/medical background; I have had E since I was 6 or so. I first started having absence seizures and everyone thought I was just inattentive, forgetful, and my mother always thought I had "selective hearing". They thought this until I was 8; a friend of my father's - a neurologist- came to out house to stay a few weeks and said "You need to talk to her doctor; the medicine specifically...they should try a new one or up this dose." My parents were like "?!?!" He said the magic words "Your daughter is exhibiting all the classic signs of mild generalized seizures; she has epilepsy." He diagnosed me with photosensitive epilepsy officially after a simple EEG- had 2 smalls in my sleep and a great TC when they did the strobe test.

My parents were so overprotective that if they could have sent me to school engulfed in sofa cushions they would have. I never had to wear a helmet (no atonic seizures) but when I started having TCs they freaked out properly and everything social stopped (they wanted me to stay in our house as much as possible) and I got very lonely.

I realized after three miserable years at university (I'm just starting my fifth...switched my major a few times haha) that I had to be the one to take control of E, not the other way around. I still have a TC once every week/week and a half and absences multiple times an hour, but with a positive attitude, E is pretty funny! I wear shirts that say stuff like "I make epilepsy look good" or "Does this shirt make me look epileptic?" and if faking it till you make it is true, I'm finally happy with where I am with E.

I'm excited to be here!!

PS "What do you do if someone with E has a fit in your bath?"
I think we've all heard that one before...but it's still my favourite haha

-seizurrific

 

[BlueSkies2220]

Welcome to the forum...its very nice to meet you.. pull up a chair and feel at home. Everyone here has been very nice.. and we understand, we've been through our own battles as well. At least your parents have been supportive. My mother never let me see a doctor for my issue, she tried to brush it under the rug, and i had to live with complex partials until my early 20's when it finally generalized into a tonic clonic. then i did my own research and discovered that all my life i've had epilepsy. Hopefully you'll make some new friends while here and if you have any questions dont forget to use the search function or start your own thread... WELCOME!!

 

[Nakamova]

Hi seizurrific, welcome to CWE!

Are you on anti-seizure meds? If so, they should probably be tweaked to see if you can get better seizure control. Weekly tonic-clonics are kinda worrisome, especially because the more you seize, the more your brain gets in the habit of seizing, and the easier it can be to seize in the future.

I think having a positive attitude about epilepsy is great. It's not always easy to muster one, but if you can, it helps with the coping and overall health.

Best,
Nakamova

 

[RobinN]

Welcome Seiz -
It is my daughter that has dealt with seizures, but they seem to be under control these days. Very blessed to have had this forum during the worst of times.

Hope you make yourself at home

 

[seizurrific]

Thank you so much for the kind welcome! Reading the various threads and posts I already know I'll like it here (and fit in!! ).

BlueSkies, I feel for you...my mother never wanted to acknowledge my epilepsy. Even after I was officially diagnosed I'm sure my mother wished there was a way we could keep it under the rug. Se never quite knows what to say (even now!) when people ask after me and she forbids the words epilepsy or seizure, preferring to call it my "spells" I always thought that was pretty funny- it's like fainting spells....but wouldn't it be nice if we were all just fainting? A lot? haha

Nakamova I wish there was more they could do with my meds! I've tried various meds all my life and I've found Lamictal, which I reeeeally like, but we keep having to up it and it's really annoying to have to remember to take a pill every hour. Brand name is far too expensive or I'd just ask for the XR but no such luck! There is talk of 'intractable epilepsy'....I hope it's not true but it sure would explain why nothing has worked for the past 14 years haha I keep trying though...there has to be something out there for me (besides brain surgery!)!

RobinN I'm very glad to hear your daughter is doing well; that's the ultimate goal for us all, isn't it...be seizure-free!

 

[Cint]

There is talk of 'intractable epilepsy'....I hope it's not true but it sure would explain why nothing has worked for the past 14 years haha I keep trying though...there has to be something out there for me (besides brain surgery!)!

Hi seizurrific and welcome,

You do have a wonderful attitude so keep it up. I have intractable epilepsy. I tried numerous meds, had an unsuccessful left lobectomy, and now have the VNS-which isn't a cure all, but is has helped control seizures better for me. I hope you and the doctors will find something to control your seizures.
Keep up the great attitude!

 

[Nakamova]

seizurrific, have you looked into neurofeedback? It's helped some folks reduce the number of seizures they have. Downside is that it can be pricy (it's rarely covered by insurance) and takes 20 sessions or so. Upside is that there are zero to minimal side effects, plus the benefits remain even after the sessions are over.

 

[emma]

I'm new here myself - but I strongly relate to your childhood - though I didn't get diagnosed or even had Epilepsy brought to our attention until a few weeks ago! ;o

all those childhood things you shared was kind of what mine was like, though they preferred the term "fits" instead of spells to describe mine. ^.^

Sounds like you and I might have a lot in common - especially the finding the humor in things.

I want that shirt though, the one that said "I make epilepsy look hot" you have to tell me where you got it front. I totally could see myself wearing it... (and hanging it next to my hello kitty collection)