topic Re: Epilepsy in Wellness

Epilepsy

lovesrecess — Wed, 17 Jul 2019 01:57:26 GMT

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

Re: Epilepsy

colliemom4 — Wed, 17 Jul 2019 02:04:00 GMT

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

Re: Epilepsy

x Hedge — Wed, 17 Jul 2019 02:47:28 GMT

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.

Re: Epilepsy

Love my grandkids — Wed, 17 Jul 2019 03:13:23 GMT

@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.

Re: Epilepsy

wishmoon — Wed, 17 Jul 2019 03:33:25 GMT

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.

Re: Epilepsy

BirkiLady — Wed, 17 Jul 2019 04:42:28 GMT

@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.

Re: Epilepsy

Lindsays Grandma — Wed, 17 Jul 2019 06:31:18 GMT

@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.

Re: Epilepsy

Lindsays Grandma — Wed, 17 Jul 2019 06:38:48 GMT

@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.

@BirkiLady...

Re: Epilepsy

sarahpanda — Wed, 17 Jul 2019 10:18:05 GMT

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?

Re: Epilepsy

ciao_bella — Wed, 17 Jul 2019 12:01:31 GMT

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.

Re: Epilepsy

lovesrecess — Wed, 17 Jul 2019 13:25:41 GMT

You are so fortunate to have your seizures under control. I guess you must have to have experienced it to know it is indeed misunderstood.

Re: Epilepsy

lovesrecess — Wed, 17 Jul 2019 13:33:23 GMT

Have had status seizures....I need no more information, but the types and names of seizures has really grown and the incidence has increased. More public awareness of what to do when they see someone experiencing a seizure is needed..
The fact you had to go on disability at age 51 says a lot. I have intractable seizures as a result of a congenital, neural-tube defect. I live with it everyday and pray for a seizure-free night...and wake up with gratitude. SUDEP is an ongoing concern. I am glad you don’t have that concern. Be grateful for each day. Do you currently takes meds?

Re: Epilepsy

lovesrecess — Wed, 17 Jul 2019 13:37:10 GMT

Many employers are wary of hiring someone who has epilepsy. Also, dentists are hard to find in some cases due to liability, they are afraid if the patient has a seizure while under their care and is injured or dies from the seizure, they will be held liable. I taught students with seizure disorders ( which is not uncommon is several other disabilities) for many years, and parents had to drive several miles to see the one dentist who would take them as patients.

Re: Epilepsy

sfnative — Wed, 17 Jul 2019 19:45:22 GMT

Based on personal experience, if you are an adult and your seizures are under control, do not admit in writing or verbally to a prospective or active employer EVER that you have epilepsy. You will be doomed.

The only exception, again, due to personal experience later in my career, is when applying for a position with the federal government. Though I am ignorant of all of the facts, the federal government not only must abide by the ADA, as must all businesses, but does hire people with various disabilities - lots. It wasn't until I was hired into a niche position with them that I came to understand that I fell into that category. Had no clue, as all I ever wanted to do was take my load of pills at night and forget about it.

Re: Epilepsy

BirkiLady — Thu, 18 Jul 2019 02:29:38 GMT

@sarahpanda Why would working be a problem? I also have a couple of degrees and have worked in upper management positions all my life. In a position at a Fortune 500 Co. I had 43 men to supervise on a daily basis for 13 years. That was challenging!

Why would any company care about seizures any more than obesity, heart, diabetes, or a number of other health problems employers see everyday? An employee has a health screening before they are actually on the job, which would determine if they are healthy enough to work in the position they have been hired to do.

All companies are hiring people for their experience and their ambition! If she wants to work, she will never have a problem. I've never had to search for a position. Was always able to land the job when I decided it was time to change. Have never had a poor review or been asked to resign/fired.

Do admit my physicians filling out the Disability forms was devestating and humilitating.

Years ago, a teaching position had over 100 other applicants . . . they chose me. And I have always been honest about my epilepsy due to insurance. Granted, we only stayed in that community 18 months before my husband was transferred. But I worked during that time because I wanted to work.

If someone has a hesitation about work, all potential employeers will pick up on those feelings in an interview. I could always tell when someone did not want to work and was using excuses. Needless to say, they weren't considered for employment. Our openings needed people who were ambitious, personable, knew the area or field or work, and willing to join the current employees as team players.

ETA: The people with disabilities hired in my Departments or Agency were far above average in intelligence and in their preformance on the job. They often excelled in their ambition, goals, ideas, ability to work with others.

Re: Epilepsy

BirkiLady — Wed, 17 Jul 2019 21:13:17 GMT

We've lived in many states during our married life before returning to Nebraska. I've always found excellent dentists without a problem. By providing a complete list of my medications, all physicians and DDS are able to work around my seizure activity.

No, I'm unable to use any novacane; never have. It causes seizures for me. May not for any other epileptics; IDK. Never asked anyone else. Each DDS understood and we've worked together with all kinds of dental work. Not a big deal.

Same with my three fractures in my back (following the auto accident in Dec.). I couldn't have surgery because of the risk of anesthesa. My Ortho. Surgeon understood exactly what would happen and he decided let my back heal naturally. Painful? Of course! It was the worst pain I could imagine for months. I'm currently in PT in an attempt to alleviate the constant ache. I've been told those disks don't ever heal so don't know if this is as good as it gets. If so, I'll live with it. But PT feels good while I'm working on it!

Yes, of course I take a cocktail of meds for epilepsy. I also take medications for diabetes, RA, lupus and a diuretic. I've been honest about all of this many times. Seldom do I have breakthrough seizures (as I mentioned) during the day, but I do have noctural seizures. I don't want a pity-party ever.

Everyone has problems of some kind. This is my normal now and I intend to enjoy life with gusto. I could turn into a pathetic old woman and feel sorry for myself OR I can make the most of my life with friends, various interests, volunteering and my love of reading and gardening. The latter is so much more enjoyable for my family and me!

Don't let epilepsy stop you (or anyone) from living a full life. That went out the door 100 years ago with the Old Wives Tales about witches. Good grief.

Re: Epilepsy

chrystaltree — Wed, 17 Jul 2019 21:45:26 GMT

I don't think Epilepsy is misunderstood at all. I think it hasn't been discussed here because it's one of those conditions that can be diagnosed and treated with a variety of drugs and there are surgical options for the most serious cases. For those who don't respond to medications. I have a cousin who was diagnosed when she was 6, she's 56 now. Her seizures are well controlled on medication but she does occasionally experience break through seizures. She says that happens once or twice a year. My brother experience seizures from childhood until his mid twenties but I don't know if he had formal diagnosis of epilepsy.

Re: Epilepsy

BirkiLady — Thu, 18 Jul 2019 02:31:33 GMT

@lovesrecess Of course I've had SUDEP all my life. It not something I'm going to dwell upon. We are all going to die sometime and I've always wished to go in my sleep. Who could ask for more? Beats a lengthy illness in Assisted Living or (worse yet) Skilled Care; both of which would take a good chunk out of my finances. I would much rather leave those monies to my family than a medical "community"!

This has been a life well lived; full and rewarding. I've done everything (and more) than ever anticipated. Family and friends have returned the love unconditionally. Death is something I've never feared; and honestly, feel like I have beat the odds.

Years ago I donated my body to Univeristy of Nebraska Medical Center (UNMC) in Omaha for research by their medical students. Now that I have other health problems, hopefully they will find something to help other patients (especially Lupus which is a wicked and mysterious health problem for each individual).

My death will hurt my family deeply . . . not me. In the meantime, why worry about it? All legal and financial documents are up-to-date. Nothing else I'm able to do to make it any easier for my loved ones.

Re: Epilepsy

LadyAlice — Thu, 18 Jul 2019 04:02:13 GMT

My twin sister has had epilepsy since she was eight years old. There is no definitive answer as to why. Because of the location in her brain that’s affected, surgery helped but could not cure her. She is on medications that must be monitored because of serious side effects. Epilepsy is still misunderstood by some of the public, including the entertainment industry, which has been addressed by the Epilepsy Foundation and other advocacy groups. As her caregiver, I will always fight for her!

Re: Epilepsy

wishmoon — Thu, 18 Jul 2019 12:50:44 GMT

I DO believe, as an epileptic, that this disease is misunderstood. If doctors understood it, they'd be able to "cure" it, they can't. Many doctors have opinions of why you have epilepsy, but they don't know. Stress doesn't give you epilepsy. If that were the case, ppl would quit their stressful jobs/situations and be seizure-free. Many times, as you get older, seizures become less and less. Also, you wouldn't have to take medication.

I've been to many hospitals, seen the head neurologists and can truly say that NO doctor knows the reason. The only "cure" is medicine and sometimes, if you're lucky, time. I'm not willing to take the chance on my growing out of it, so rely on medicine.