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Living with adult onset Epilepsy
#11
RE: Living with adult onset Epilepsy
Showing up at 60 and side predominance is different. Have the docs identified a specific cause?
I don't have an anger problem, I have an idiot problem.
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#12
RE: Living with adult onset Epilepsy
(October 27, 2020 at 1:00 pm)Fireball Wrote: Wow that really stinks! I'm hoping that the doctors can figure out a safe medical regimen to help you.

Thanks...my Neurologist wants me to go to U of Michigan or Indiana U for testing. Not sure if I'm ready.

(October 27, 2020 at 1:06 pm)brewer Wrote: Slowing up at 60 and side predominance is different. Have the docs identified a specific cause?

Not yet...
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#13
RE: Living with adult onset Epilepsy
(October 27, 2020 at 1:07 pm)Dizzyagain Wrote:
(October 27, 2020 at 1:00 pm)Fireball Wrote: Wow that really stinks! I'm hoping that the doctors can figure out a safe medical regimen to help you.

Thanks...my Neurologist wants me to go to U of Michigan or Indiana U for testing. Not sure if I'm ready.

(October 27, 2020 at 1:06 pm)brewer Wrote: Showing up at 60 and side predominance is different. Have the docs identified a specific cause?

Not yet...

What's holding you back from going for more tests? If it were me I'd be making the appointment(s).
I don't have an anger problem, I have an idiot problem.
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#14
RE: Living with adult onset Epilepsy
(October 27, 2020 at 1:15 pm)brewer Wrote:
(October 27, 2020 at 1:07 pm)Dizzyagain Wrote: Thanks...my Neurologist wants me to go to U of Michigan or Indiana U for testing. Not sure if I'm ready.


Not yet...

What's holding you back from going for more tests? If it were me I'd be making the appointment(s).

My Neurologist retires in December. Waiting to see what my new Neurologist has to say first. Plus the pandemic is keeping me a bit cautious.
Btw...I already had tons of tests 😷
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#15
RE: Living with adult onset Epilepsy
(October 27, 2020 at 12:47 pm)Dizzyagain Wrote:
(October 27, 2020 at 12:41 pm)BrokenQuill92 Wrote: Are you petite mal or grand mal?

Gran mal (tonic clonic) during the day and while sleeping. Mostly on the right side.

Well hell. Can’t help you there. I’m petit mal/ abscence seizures day time stress induced for the most part. So as of late they’ve been happening a bit more. Yay 2020. Mine are about 30 seconds to a minute blank spot. Rapid blinking from the outside. With rare dead faint spell.

I take it you get dizzy spells hence the nickname?
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#16
RE: Living with adult onset Epilepsy
(October 27, 2020 at 1:40 pm)BrokenQuill92 Wrote:
(October 27, 2020 at 12:47 pm)Dizzyagain Wrote: Gran mal (tonic clonic) during the day and while sleeping. Mostly on the right side.

Well hell. Can’t help you there. I’m petit mal/ abscence seizures day time stress induced for the most part. So as of late they’ve been happening a bit more. Yay 2020. Mine are about 30 seconds to a minute blank spot. Rapid blinking from the outside. With rare dead faint spell.

I take it you get dizzy spells hence the nickname?

Vertigo...mostly from medication 💊
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#17
RE: Living with adult onset Epilepsy
(October 27, 2020 at 10:50 am)BrokenQuill92 Wrote: [...]

Remember you’re allowed to say NO.

[...]
Sorry for the tangent, but I just wanted to write this in a tangentially related subject to epilepsy; psychiatry.

The amount of pill-pushing by psychiatrists towards uninformed mental patients leaves a bitter taste in my mouth. In my experience (for what it's worth) in any other health domain, be it treatment of diabetes or just the fucking abominable diet pills, people get an honest and on an "equal footing" consultation. You can probably imagine already where I'm going with this. Waaaaay too many times psychiatrists flatly ignore the concerns and requests of tangible information about the psychotropic drugs they're so fucking eager to dump on mental patients, and why should they? They're crazy, they're not competent to take any decisions, pfffft. Damn assholes.
"The first principle is that you must not fool yourself — and you are the easiest person to fool." - Richard P. Feynman
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#18
RE: Living with adult onset Epilepsy
(November 2, 2020 at 8:07 am)Sal Wrote:
(October 27, 2020 at 10:50 am)BrokenQuill92 Wrote: [...]

Remember you’re allowed to say NO.

[...]
Sorry for the tangent, but I just wanted to write this in a tangentially related subject to epilepsy; psychiatry.

The amount of pill-pushing by psychiatrists towards uninformed mental patients leaves a bitter taste in my mouth. In my experience (for what it's worth) in any other health domain, be it treatment of diabetes or just the fucking abominable diet pills, people get an honest and on an "equal footing" consultation. You can probably imagine already where I'm going with this. Waaaaay too many times psychiatrists flatly ignore the concerns and requests of tangible information about the psychotropic drugs they're so fucking eager to dump on mental patients, and why should they? They're crazy, they're not competent to take any decisions, pfffft. Damn assholes.
I totally get it. I would be dead probably if they Hadn’t figured out that me spacing out wasn’t adhd or bipolar. Mind you they gave me meds that did a number on my liver and pancreas. But I alway tell everyone get a second opinion. It could save your life. It saved mine.
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#19
RE: Living with adult onset Epilepsy
UPDATE: My Neurologist upped my meds....he also scheduled me to go to IU School of Medicines Comprehensive Epilepsy Program. Most likely will be after Thanksgiving.
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#20
RE: Living with adult onset Epilepsy
(October 27, 2020 at 10:23 am)Dizzyagain Wrote: It's hard to imagine that life couldn't change but it did.....first the seizures then the pandemic. Now my Neurologist says I cannot drive...and just like that, change. Now i have to rely on others to get me around. With that, i am now on short term disability from my employer. That will be solved soon as my employer is working on plans so I can work from home. Hopefully they will get it figured out soon. I get bored easily...all I can do is wait.

My late mother had Epilepsy. The first time I saw it was when I was a kid. She hid it well from me. I lived in a tiny town house, a shoe box, and the first time I saw her have a epileptic seizure was after my late adoptive father died a few years earlier. I don't remember what I was running up the stares for to the top floor, but I could imagine, it was because I wanted food or toys or something. Her fellow teacher Judy was in the room, the door was closed, and I had no clue what was going on. All I remember was going up the stares, turning the corner to the master bedroom door, opening it up, and seeing my mother jerking around on the floor between the foot of the bed and the chest of drawers. Looking back at it now, my mom most of the time felt it coming on, so Judy laid down blankets and pillows to insure her jerking would not cause injury.

But not knowing anything at that age, walking in on it was frightening.
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