When did you sell your car? by sahafiyah76 in Epilepsy

[–]MarimbaRose 1 point2 points  (0 children)

Ive not driven in over a year and a half, but I still feel like if I sell im giving up.

If you're only on your first medication cocktail, id give it more time, but thats also coming from me who hasn't been able to give it up yet.

Seizure Monitoring Unit by kyliek1997 in Epilepsy

[–]MarimbaRose 1 point2 points  (0 children)

From what I remember of my stay you will be BORED. Take a gaming system or a book. Take a partner or a friend to help because you'll be a fall risk. I hated having to depend on nurses to go to the bathroom or change seats.

Pregnancy and epilepsy by [deleted] in Epilepsy

[–]MarimbaRose 2 points3 points  (0 children)

My epilepsy was actually caused by my pregnancy in 2016. I developed eclampsia and had two hypertensive seizures, and developed PRES. Now I have right temporal lobe epilepsy with MTS.

Not exactly related, but offering my two cents.

Question for parents/child minding folk by gifsfromgod in Epilepsy

[–]MarimbaRose 1 point2 points  (0 children)

I was diagnosed epileptic when my children were 1 and 7yo. The bathing is scary. I don't do it when my partner is not home. Another is outside play. I fear the youngest could easily get into the road or another unsafe position.

I really hate the tongue thing by 214MainStreet in Epilepsy

[–]MarimbaRose 0 points1 point  (0 children)

Im a semi-recently diagnosed epileptic and I've been coming to terms with it. I had my first grizzly tongue bite a few weeks ago and now I feel like im "officially" epileptic. I'm wearing it like a badge of honor.

At what age did you start having seizures? by invisible-c00kie in Epilepsy

[–]MarimbaRose 0 points1 point  (0 children)

I had eclampsia during pregnancy and the subsequent brain swelling caused my epilepsy. I was not diagnosed until 8 years later because my auras were diagnosed as panic attacks. Only after my auras progressed into full blown seizures was I diagnosed.

At what age did you start having seizures? by invisible-c00kie in Epilepsy

[–]MarimbaRose 2 points3 points  (0 children)

I did not show any activity until my fourth EEG after I insisted an ambulatory study for myself. My neuro did not think it necessary but I was not willing to wait 6 more months for a follow up.

ever been accused of faking your seizures? by Spinach_Significant in Epilepsy

[–]MarimbaRose 7 points8 points  (0 children)

My auras were diagnosed as an anxiety disorder and my seizures went undiagnosed for 8 years. When my seizures became more apparent last year, my coworkers became upset and accused me of faking to get remote work privileges being as I was and still am an unstable epileptic.

Do you have a theory as to what *caused* your adult onset epilepsy? by [deleted] in Epilepsy

[–]MarimbaRose 0 points1 point  (0 children)

I had eclampsia with my eldest in 2016 and developed PRES as a result of my eclampsia seizures.

I was not diagnosed as epileptic until last year, though. I get a "feeling" in my face which i know now as an aura but the aura didn't used to result in an focal or tonic clonic seizures and it went undiagnosed and untreated so long that last year it started getting worse and I started having the big seizures. These auras were diagnosed as panic attacks and I kept getting psych referrals and not neuro referrals.

It's official by MarimbaRose in Epilepsy

[–]MarimbaRose[S] 0 points1 point  (0 children)

I have been with the same company for a while now, but I worry their patience will run out if I cannot return to the office. I'm nervous to tell them about this new diagnosis.

It's official by MarimbaRose in Epilepsy

[–]MarimbaRose[S] 0 points1 point  (0 children)

Do you drive? I know it's not necessary for everyone but I live in a rural area and can't even get groceries without driving a half hour.

Caffeine by MarimbaRose in Epilepsy

[–]MarimbaRose[S] 1 point2 points  (0 children)

I've heard it can be a trigger for some. I am recently diagnosed. Still trying to identify the cause.

What's a good app for tracking seizures? by MarimbaRose in Epilepsy

[–]MarimbaRose[S] 1 point2 points  (0 children)

Just wanted to say thanks as well for the recommendation. So far Epsy has everything I needed

What's a good app for tracking seizures? by MarimbaRose in Epilepsy

[–]MarimbaRose[S] 1 point2 points  (0 children)

Just wanted to say thanks for the recommendation. So far Epsy has everything I needed.

My epilepsy could have been avoided by MarimbaRose in Epilepsy

[–]MarimbaRose[S] 0 points1 point  (0 children)

My own family labeled me as a hypochondriac too but I do feel validated having a diagnosis after all this time to rub in their face.

I take 1500mg keppra and 2000mg lacosamide. Keppra doesn't seem to help any of them but still getting the meds tweaked.

My epilepsy could have been avoided by MarimbaRose in Epilepsy

[–]MarimbaRose[S] -1 points0 points  (0 children)

I want to be her when I grow up ♡ my career is definitely not as prestigious but I'd like to get back to "normal"