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BlueEyes

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Hi everyone! I was just recently diagnosed with epilepsy. I actually started having seizures at 12 but was unaware it was a seizure. I tried speaking to my parents but undoubtedly made no sense to then. They came and went over the years. A few years ago they came back so I decided, being an adult, to research the symptoms. This us when I fond they might be seizures. Upon making an appointment to see a physician they stopped so I let it go, thinking it was a fluke. A few months ago they came back with a vengeance. I decided something had to be done. After testing and medical history the neurologist determined it was epilepsy. So here I am, finally working in the field I studied in college and now I'm jobless :-( The requirements of my job require me to travel daily and with current seizures and exhausting my FMLA it's just over. Luckily I can draw long term disability from work but it's frustrating. I feel like all my hard work has been for naught.

Yeah I'm a bit cranky ;-)



So here I am with tons of questions and an internet search that offers either worst case scenarios or repeats of what I know. I come searching for answers :) and others with the disorder. I look forward to getting to know you all!




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Ignore the typos. Got to love "smartphones".


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Welcome!

I had absent seizures all my life but my parents just wrote it off as daydreaming. They'd say I went into "la la land" or include me in a blonde joke. I wasn't diagnosed until 25 when the complex partials kicked in. They felt bad hearing that from my neurologist.

I'm on disability too. Only its SS. Bugs the crud out of me when people slam those "mooching off the system" and I sitting there using it. I don't like being grouped into that. I clear need it but still I have guilt that I even do. I was working 2 job, graduated college with a degree in Human Services and early childhood development. I had just started being a paraeducator in a middle school working with kids with learning disabilities. My car was paid off and I had my very own apartment. Then BAM! work let me go, can't drive my car and ended up moving in with my boyfriend (husband now). Talk about 180! It's been 6 years now. I'm married and have a 2 year old. I had surgery that helped for a while but scar tissue mucked things up. I'm still on disability because I don't have auras before one comes. SS updated my file last year and I'm still classified a 'possible improvement'. Sucks but it is what it is.

Anyway, ask or vent anytime you wish! Glad you found us!
 
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I'm hoping to not have to apply for SS. I enjoyed working. My LTD from work pays better than SS. I have 2 degrees but the one I worked with was in psychology. I worked with children who had behavioral or emotional problems.



I mostly have a warning before mine which is I guess is what you call an aura. Not always though.


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Hey, Blue Eyes.

Welcome. I have a job that I have to be controlled at. There is no wait after a seizure, but if I have one, it is certainly a big safety problem. You'll get them under control and get back to.
 
BlueEyes said:
So here I am with tons of questions and an internet search that offers either worst case scenarios or repeats of what I know. I come searching for answers :) and others with the disorder. I look forward to getting to know you all!
Click to expand...

welcome blueeyes,
it's good for you to research tho, it's just a matter of where. the info on e, seizures, triggers, medication, and options such as the vns or brain surgery is endless. my recommendations:

-www.ncbi.nlm.nih.gov/books/NBK2609
-www.ncbi.nlm.nih.gov/books/NBK2597
-www.brain.oxfordjournals.org/content/133/11/3221.full.pdf

anything pubmed is a great resource too, it was suggested by my doctor as that's a main one the medical profession uses. i do agree with you re: this site, a life changer really. between reliable and investigative websites, great docs, and being among people who know the pain stress and fear, it's about all we need ;)
 
Hi BlueEyes!

You'll get a lot of help and advice on here, I know I have. You'll be surprised how many people go through the same things that you do and find out how they deal with it.

Since I can't work I'm on disability and SS. It's hard not being able to drive or work but some how I do it.

Glad to meet you!
 
Blue Eyes...

Hi and welcome! I am a person who studied for 30 years (my entire adult life)
only to find out it was a CULT, BS ....worthless ($cientology, ftr).

However ..I still don't feel
"It was all for naught"...as no matter what you do, you learn s/t from it!

So....pull up a chair, grab some popcorn and enjoy the ride. :)

My best to you,

Tory/Magoo
 
My job required driving to my clients home and school so with not being able to drive it ruined that :-/ I'm trying to decide now whether to get my MSSW while we get this under control. I have 2 years to draw ltd from work so I need to do something productive. At least we wont have to find child care for the summer :) I get to spend my summer with my boys!

Thanks for all the insight and support! I'm slowly accepting the diagnosis. People don't understand that it's a type of loss so you have to go through the stages of grief.


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Hi Blue Eyes,

Welcome to CWE. It was created by Bernard out of love for his wife Stacy. That love has permeated throughout the whole forum.

I was diagnosed at 6 years of age with epilepsy. If I had gotten it after college and work, I understand that you would have to go through some grieving process.

Look at the positive side, you have a husband and 2 boys. I have a husband and 3 boys and one daughter. Three grandchildren as well. I am happy with my life, I am 71 years old now. My husband and I celebrated our 50th wedding anniversary.
 
Welcome! It's a whole new world (getting this diagnosis) but we're all here together and I think you will find this an amazing place for answers and for friends
 
Hi there!! And you are right regarding the loss and grief. I mourned the loss of my neurological health, as well. I just got through denial and began to accept that this is lifelong. Luckily, I have an awesome Epileptologist who answers every "stupid question" I present and finds new and creative ways to answer NO to the same question every month: "So, do you think I'll ever stop having seizures after my brain heals up from that horseback riding accident??" A few months ago, he finally said NO in a way that I accepted it.
Never say never regarding work and your education.... I have a Master's in Counseling and a year down in a PhD in Nonprofit Management. I work full time now, but while my seizures were out of control last year I developed my own grant writing business so that I could work from home. Just keep your eyes on the prize and remember that life isn't over, it's just different now. :)
 
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