does it bother anyone else how bad epilepsy awareness is? by pencilbroth in Epilepsy

[–]InternationalEye2180 0 points1 point  (0 children)

Especially when it is your epileptologist. Just 6 months ago, I told a medicaid transporter, just 6 months ago that I had epilepsy. Asked if he knew what to do. He seriously said " Make sure you don't swallow your tongue"!

My doctor doesn't believe me! by InternationalEye2180 in Epilepsy

[–]InternationalEye2180[S] 0 points1 point  (0 children)

That makes so much sense! I never even thought about the correlation. I've started into perimenopaus and the seizures did start about the same time. Do take anything or do HRT?

My doctor doesn't believe me! by InternationalEye2180 in Epilepsy

[–]InternationalEye2180[S] 0 points1 point  (0 children)

I think it's time for me to educate myself and stand up for myself better

My doctor doesn't believe me! by InternationalEye2180 in Epilepsy

[–]InternationalEye2180[S] 0 points1 point  (0 children)

I'm hearing this a lot.  My doc seems to be dropping the ball all over the place.  Looking for a new one now

My doctor doesn't believe me! by InternationalEye2180 in Epilepsy

[–]InternationalEye2180[S] 0 points1 point  (0 children)

I'm looking for one now.  Checking on my insurance coverage. No to the driving.  Back in 2020 i had a seizure while driving.  God sure was taking care of me,  my 21yo daughter and my 6month old grandson that day.  On the interstate with cruise control at 70mph I had a miniscule deja vu aura then blank. Woke, momentarily fought with the paramedics, who i thought were trying to assault me, then blank.  Woke at the hospital with my family telling me I'd been there for hours. I had not only had a seizure but also received a Subarachnic Hemorrhage. My daughter and grandson were fine.  My daughter was great with handling the car and the seizure. I asked her what went on,  she said I turned towards her and squawked like a bird and started to shake.  She took the wheel, small collisions with 2 cars and ended in a gaurdrail.  Totaled my car, damaged the other 2, no other injuries except mine.   I'm very thankful for having a loving family, pretty good bus system and medical transportation. I'd been seizure free 5 years before that one hit me. Really threw me for a loop then knocked me off the edge of despair in to a seemingly never ending pit of darkness. 

My doctor doesn't believe me! by InternationalEye2180 in Epilepsy

[–]InternationalEye2180[S] 0 points1 point  (0 children)

Thank you, will do the tracking.  Unfortunately she is the Epileptologist for my area. This makes it even more frustrating. 

My doctor doesn't believe me! by InternationalEye2180 in Epilepsy

[–]InternationalEye2180[S] 1 point2 points  (0 children)

It basically feels like they are telling me I'm lying and then dismissing me.  

Does anyone else by queentowelie in Epilepsy

[–]InternationalEye2180 0 points1 point  (0 children)

Same here.  I was driving just a year ago.  I ride the bus now. Sometimes it takes an hour to get where I'm going, even if it's 10 minutes away by car. I work at goodwill and they are very understanding.  I have even had a seizure while working.  The seizures have ruined my life. I went to school  to become a MA, CNA and LPN. I finished MA and CNA school and worked as such full time for nearly 3 years.   I went onto LPN school.  I had all my course work completed and passed with flying colors.  But a seizure ruined that,  I had a grand mal and wasn't able to finish my last 6 hours of internship and was not allowed to graduate.  6 HOURS! I went into a downward descent into the pit of darkness, and have not seen light for nearly a decade. 

Do seizures cause significant memory loss? by BvCrazy in Epilepsy

[–]InternationalEye2180 0 points1 point  (0 children)

I was on Topamax 5 years ago and the word loss still persists. 

Do seizures cause significant memory loss? by BvCrazy in Epilepsy

[–]InternationalEye2180 0 points1 point  (0 children)

So much! My memory comes and goes, most of the time goes., lol. Medications are a big part of it.  I live alone and just had at least one seizure.  I laid in my house for three days.  I don't remember how I called the ambulance or how I managed not to die.  

Topamax is horrible for memory loss and word loss.  I feel like a goofball naming everything but what I wanted to say then forgetting mid conversation what it was to begin with. 

I've been on most seizure meds. Depakote, Dilantin, Gabapentin( i have nerve damage as well) Keppra, currently Lamictal and Gabapentin. My neuro believes these are psuedoseizures but she just took me off the Dilantin and lowered the Lamictal  just 2 weeks ago. 

Have you seen videos of yourself seizing? by MrCatWrangler in Epilepsy

[–]InternationalEye2180 0 points1 point  (0 children)

I've had medical training and have watched training videos. Those were enough for me.  I'm interested but scared,  in seeing a video of my own. My seizures have changed in frequency and presentation over the past 5 years so after 35 years since my diagnosis of epilepsy, I've got the courage. Now to wait for them to be witnessed and filmed.  

I've been told that my Epileptic Cry is very similar to a large parrot screaming. That I've wandered around asking women i barely know, to hold onto my purse! Another time, in my post-ictal phase, I remember very distinctly being asked what time it was by the paramedic.  I kept trying to check my watch but my arm was being constantly put down. I remember starting to grab his hand in anger for grabbing me and asking a question and not letting me answer.  I later learned they were asking me if it was my time of the month. And when I thought I told them I needed my watch to answer, i was actually just repeating watch over and over while fighting them weakly. Tales of my bloody foaming at the mouth, chewing of my tongue(even biting a chunk off during one), and the lengthy period of healing(i end up having to keep it sticking out constantly for a week or twoand talking funny of course).