Wellness

[lovesrecess]

Do you someone with epilepsy? Of all the many topics here, I have never seen anyone post anything about epilepsy....a very misunderstood condition.

[colliemom4]

I grew up with someone that has it. I haven't seen her in quite a while as I left the area.

[x Hedge]

Never thought of it as "a very misunderstood condition".

Went to school with a girl who'd occasionally have a petit mal seizure, despite being medicated.

I recall an incident where evidently the teacher was the only one in the room who didn't know what was going on.

Worked with patients who were treated for epilepsy, among other things. A patient would have a grand mal seizure now and then.

They'd be positioned to minimize potential for injury and as the seizure progressed we'd keep them comfortable and in the safest position, time it, observe, and signal for other available staff to assist if necessary.

[Love my grandkids]

@x Hedge I have a cousin a few years older than I am. Haven't seen her in years but do recall she had a few grand mal seizures and was no longer allowed to drive. Of course she's always been a big boozer too so  doubt that helps. It's a shame, really.

[wishmoon]

I have epilepsy and have since the age of 19. It's a very misunderstood disease but for me, completely controllable on medication. Neurologists have no idea why. My life is normal except for taking three pills daily.

[BirkiLady]

@lovesrecess  I've posted many times on here about my epilepsy and seizures. Have had grand malls since birth and petit mals (don't know if they are still called that) until in my late teens to mid-20's, when I apparently outgrew them (can't remember when I was able to stop taking that medication).

Never felt it was "misunderstood". There is a wealth of information if you look around or have good physicians and a neurologist for medications. Long before the internet, the libraries were full of information, the Epilepsy Foundation and American Neurology Association and various researchers were available for information, as well as Mayo's in MN, Menninger Clinic in KS, NY Presbyterian Hospital, Cleveland Clinic, Johns Hopkins in Baltimore and Uni. of  Nebraska Med. Center in Omaha that I'm familiar with over the years due to where we've lived and where I've gone for tests over 71 years.  

After a few years of massive seizures, my secretary calling 911 and ending up in the hospital confused and exhaused, my physicians and neurologist had the Disability paperwork completed for me. I signed the paperwork; I was only 51.  My husband cleaned out my personal belongings and I did not return to my office per my neurologist's firm instructions. My physicians contacted the Human Resources Office since I was the upper management person of that State Agency.

The next few years are kind of hazy. I was put on a variety of different medications in an attempt to stop those violent seizures. When all was said and done, the stressful job that I loved so much apparently contributed to the seizure activity. I had ignored my physician's requests to change positions or work part-time! I had thrived on the stress for so many years that I didn't know anything else. Staying home was boring and I hated the side-effects of most of the new meds they tried. Finally, we found a combination of medications that I could live with and that have kept those massive seizures in check (which an occasional breakthrough). That happened a couple of years before my husband's death. Some of our happiest memories were in those last 2-3 years; there was nothing but gratitude for our family. 

His sudden death in 2005 was something I was able to handle without any seizures. I'm confident he is able to RIP knowing I'm still living alone in the home we purchased in 1988. I feel his presence and am confident he is proud of the challenges that have been overcome throughout my life without hesitation.

My son is especially proud of me for not using any of my health problems (which have been diagnosed since going on disability) as crutches as I've aged. I like the independence of me!   

If you have any questions about epilepsy, I'll try to answer them. But seriously, I feel pretty normal.

[Lindsays Grandma]

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@wishmoon wrote:

I have epilepsy and have since the age of 19. It's a very misunderstood disease but for me, completely controllable on medication. Neurologists have no idea why. My life is normal except for taking three pills daily.

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[Lindsays Grandma]

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@BirkiLady wrote:

@lovesrecess  I've posted many times on here about my epilepsy and seizures. Have had grand malls since birth and petit mals (don't know if they are still called that) until in my late teens to mid-20's, when I apparently outgrew them (can't remember when I was able to stop taking that medication).

Never felt it was "misunderstood". There is a wealth of information if you look around or have good physicians and a neurologist for medications. Long before the internet, the libraries were full of information, the Epilepsy Foundation and American Neurology Association and various researchers were available for information, as well as Mayo's in MN, Menninger Clinic in KS, NY Presbyterian Hospital, Cleveland Clinic, Johns Hopkins in Baltimore and Uni. of  Nebraska Med. Center in Omaha that I'm familiar with over the years due to where we've lived and where I've gone for tests over 71 years.  

After a few years of massive seizures, my secretary calling 911 and ending up in the hospital confused and exhaused, my physicians and neurologist had the Disability paperwork completed for me. I signed the paperwork; I was only 51.  My husband cleaned out my personal belongings and I did not return to my office per my neurologist's firm instructions. My physicians contacted the Human Resources Office since I was the upper management person of that State Agency.

The next few years are kind of hazy. I was put on a variety of different medications in an attempt to stop those violent seizures. When all was said and done, the stressful job that I loved so much apparently contributed to the seizure activity. I had ignored my physician's requests to change positions or work part-time! I had thrived on the stress for so many years that I didn't know anything else. Staying home was boring and I hated the side-effects of most of the new meds they tried. Finally, we found a combination of medications that I could live with and that have kept those massive seizures in check (which an occasional breakthrough). That happened a couple of years before my husband's death. Some of our happiest memories were in those last 2-3 years; there was nothing but gratitude for our family. 

His sudden death in 2005 was something I was able to handle without any seizures. I'm confident he is able to RIP knowing I'm still living alone in the home we purchased in 1988. I feel his presence and am confident he is proud of the challenges that have been overcome throughout my life without hesitation.

My son is especially proud of me for not using any of my health problems (which have been diagnosed since going on disability) as crutches as I've aged. I like the independence of me!   

If you have any questions about epilepsy, I'll try to answer them. But seriously, I feel pretty normal.

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@BirkiLady...

[sarahpanda]

I have a close family member who has epilepsy....not 100% controlled but seizures are not frequent with the help of meds.  She has a college education...but no job.  My question is - do employers even want to hire someone with epilepsy?  Isn't it a ''risk'' for them?  Where is the best place to go for help 'for a future' for her?

[ciao_bella]

My daughter, who lives at home with me, has a seizure disorder since she's been four years old.  She's well controlled on medication (pills 3x a day) and has been seizure free for over 15 years or more.  She live a completely normal life and sees her neurologist once a year.