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Living with adult onset Epilepsy
#1
Living with adult onset Epilepsy
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.
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#2
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.

Hey there other epileptic here nice to meet ya. Yeah the man is totally keeping us down with the no driving thing.
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#3
RE: Living with adult onset Epilepsy
When at primary school a class-mate's brother died from having an epileptic fit on his way to (secondary) school as he was cycling there on the road. I imagine epileptics the world over have died due to having epileptic fits whilst driving on roads. Public transport is the way forward.
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#4
RE: Living with adult onset Epilepsy
Mine started in my early teens with hydrocephalus so I never learned to drive, but I do understand the frustration of being reliant on others. I can get you started with some things to make you a bit more independent. Just ask away.
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#5
RE: Living with adult onset Epilepsy
(October 27, 2020 at 10:31 am)Lawz Wrote: When at primary school a class-mate's brother died from having an epileptic fit on his way to (secondary) school as he was cycling there on the road. I imagine epileptics the world over have died due to having epileptic fits whilst driving on roads. Public transport is the way forward.

It does limit what you can do. I've dealt with this for only a year. My first seizure was last year while visiting Denver, CO. I'll be 60 next month. Fortunately i have transportation when I need it.

(October 27, 2020 at 10:32 am)BrokenQuill92 Wrote: Mine started in my early teens with hydrocephalus so I never learned to drive, but I do understand the frustration of being reliant on others. I can get you started with some things to make you a bit more independent. Just ask away.

Sorry you have to deal with Epilepsy. I am learning how to deal with it but the worst is the medication 💊. Put me in the hospital a few weeks ago. This is my 5th medication.
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#6
RE: Living with adult onset Epilepsy
(October 27, 2020 at 10:39 am)Dizzyagain Wrote:
(October 27, 2020 at 10:31 am)Lawz Wrote: When at primary school a class-mate's brother died from having an epileptic fit on his way to (secondary) school as he was cycling there on the road. I imagine epileptics the world over have died due to having epileptic fits whilst driving on roads. Public transport is the way forward.

It does limit what you can do. I've dealt with this for only a year. My first seizure was last year while visiting Denver, CO. I'll be 60 next month. Fortunately i have transportation when I need it.

(October 27, 2020 at 10:32 am)BrokenQuill92 Wrote: Mine started in my early teens with hydrocephalus so I never learned to drive, but I do understand the frustration of being reliant on others. I can get you started with some things to make you a bit more independent. Just ask away.

Sorry you have to deal with Epilepsy. I am learning how to deal with it but the worst is the medication 💊. Put me in the hospital a few weeks ago. This is my 5th medication.

Oh geez, it’s probably going to be a lot harder for you adjusting. I’m not even 30 yet. I can’t imagine someone my parents age adjusting to this. Well, buckle up buttercup! Yeah the med adjustment is a bitch, finding one that doesn’t make u fat, crazy, or seize more is gonna be a ride. Be very careful and don’t let them simply throw pills at you. Remember you’re allowed to say NO. And always say if it doesn’t make you feel right even if it sounds like whining. I just lost a dear sister in law who didn’t like to complain. She might still be alive if she did.
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#7
RE: Living with adult onset Epilepsy
(October 27, 2020 at 10:50 am)BrokenQuill92 Wrote:
(October 27, 2020 at 10:39 am)Dizzyagain Wrote: It does limit what you can do. I've dealt with this for only a year. My first seizure was last year while visiting Denver, CO. I'll be 60 next month. Fortunately i have transportation when I need it.


Sorry you have to deal with Epilepsy. I am learning how to deal with it but the worst is the medication 💊. Put me in the hospital a few weeks ago. This is my 5th medication.

Oh geez, it’s probably going to be a lot harder for you adjusting. I’m not even 30 yet. I can’t imagine someone my parents age adjusting to this. Well, buckle up buttercup! Yeah the med adjustment is a bitch, finding one that doesn’t make u fat, crazy, or seize more is gonna be a ride. Be very careful and don’t let them simply throw pills at you. Remember you’re allowed to say NO. And always say if it doesn’t make you feel right even if it sounds like whining. I just lost a dear sister in law who didn’t like to complain. She might still be alive if she did.

LOL! reminds me of this quote by Hunter S. Thompson "Life should not be a journey to the grave with the intention of arriving safely in a pretty well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming, Wow! What a Ride!"

I am the kind of person that gets the side effects from most medications, so yes, i tell my Neurologist when the meds mess with me. The last one, Aptiom was bad enough it put me in the hospital.

Sorry to hear about your sister. I am the only one in my family with Epilepsy.
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#8
RE: Living with adult onset Epilepsy
Are you petite mal or grand mal?
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#9
RE: Living with adult onset Epilepsy
(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.
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#10
RE: Living with adult onset Epilepsy
Wow that really stinks! I'm hoping that the doctors can figure out a safe medical regimen to help you.
If you get to thinking you’re a person of some influence, try ordering somebody else’s dog around.
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