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Epilepsy 2 months 6 days ago #3720330

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Hi folks. I was just reading through the health topics here, and I didn't see a category on "Epilepsy". I was officially diagnosed at age 62 with "right temporal lobe epilepsy, caused by a likely congenital cavernous angioma", which is essentially a blood vessel abnormality in my right temporal lobe. Thanks to my phenomenal epileptologist, I've now been seizure-free for three and a half years. I was just wondering if anyone else here shares this condition.

I've lived a hard-working and hard-partying life, retired at 57 and had 5 good years of retirement. I always figured that one day I'd wake up on a hospital gurney with a surgeon overhead telling me I was on my way to open heart surgery or something... never did I think it would be epilepsy.

The meds required to control the seizures have brutal side effects. The worst side effect is memory loss, whether from the meds or the brain damage from the seizures, or both. The short-term memory loss is bad enough, but now I've discovered that I have "holes" in my life. I just digitized all my old VHS tapes some weeks ago, and I saw footage that was completely forgotten, like seeing it anew. That's when it hit home. I haven't the vaguest recall of the events.

There is nothing "holistic" that can help, and even with brain surgery there is no guarantee of improvement, and complete uncertainty of possible post-surgical deficit. I was told they'd have to resect (remove) part of my brain. That prospect absolutely terrifies me. I've opted for seizure control instead, for as long as possible.

I do have a superpower. I started playing guitar at 7 years old. I don't read or write music. I hear it, break it down in my head, and play it... I play other peoples' music, I'm a cover musician. For some reason, I can still learn and remember songs, and I can remember every piece of music I've ever learned, which mystifies my epileptologist. I come from a long line of artists and musicians. The guitar in my profile pic was actually my dad's, the first guitar I ever touched. He gave it to me when he was in his 90's. I still perform regularly.

My description of epilepsy barely scratches the surface. There is no cure. Anyone who has epilepsy knows that. Is there anyone else here that can share their experience with me?
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Epilepsy 2 months 6 days ago #3720345

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I know a couple of people who suffer from Epilepsy,it has totally turned their lives upside down,they have really been through it,and thankfully they are on medication terrible side effects, depression,memory issues,
It’s horrible
I truly wish you all the very best for the future and always

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Epilepsy 2 months 6 days ago #3720349

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I can't believe the effects of memory loss. I can't believe how many people can't grasp the concept. I was one of them until it happened to me. It's a curse. It hits me hardest with names and faces, or faces and names. I'm humiliated when an introduction is forgotten within minutes, both the face and the name. Even people I know... a haircut or new hairstyle can do it. Thanks for the well wishes.
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Epilepsy 2 months 6 days ago #3720362

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I can only imagine how frustrating and frightening this condition is. I hope that the meds work for you and that the you stabilize. Unfortunately, I don't know of anyone who has epilepsy so can offer no advice. Sending you best wishes.

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Epilepsy 2 months 6 days ago #3720380

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Thanks. Before the initial diagnosis I woke up first in an ambulance, second time I woke up the next morning in the hospital, all wired up. I have no memory of the seizures themselves, so for me, they never happened. They scared the hell out of my wife. Alcohol is a trigger, so that's gone from my life. Essentially, the "old me" is dead, replaced by an entity with a sporadic memory, a risk as opposed to a rock, a liability instead of an asset, a fall hazard as opposed to a physically capable person, a pincushion for doctors as opposed to healthy, knowing the next seizure is not an "if", but a "when", no longer completely trusted to watch my grandkids, drive a car, or climb a ladder. The depression over all of it is mitigated by seeing a psychologist, and most of all by music.

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Epilepsy 2 months 6 days ago #3720389

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I hope this helps smile.png Epilepsy is more commonplace than people think
Below some real life stories of people with epliepsy


Little Stars - Living with Epilepsy - Joseph's Story

Living with Epilepsy: Ask Dr. Tricia Ting


www.epilepsy.com/make-difference/public-...epsy-awareness-month
National Epilepsy Awareness Month


www.childrensmn.org/2019/11/25/national-...l%20nervous%20system .

National Epilepsy Awareness Month: What you should know about seizures

Yes, children get epilepsy too[/color

All about epilepsy - the facts about epilepsy (English)


My daughter had epilepsy as a chile, we thought it was infant fits, but she was tested aged 12, after having it all down those years. I hope just talking about it helps you SixtiesRock. She had her last "Grandmal" aged 12, and a couple of petitemal after, then, as with children, she changed and had no more.....Children change every 7 years, apparently.......Anyway, epilepsy is much more common than people think.

Flickering lights can cause an epileptic fit.......seizure.......try not to watch too much tv. Do you have a flurescent tube light in your home? This flickers too.

Peace be with you............Enjoy your music smile.png Keeper
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Epilepsy 2 months 4 days ago #3721479

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Hi Rick

Have you tried looking online for an epilepsy forum where you could have contact with other people who would understand how you are feeling.

Maybe there are some epilepsy self help groups in your area. I know these groups are probably all online due to this awful pandemic but it might help if you can talk to other people about your epilepsy and medication.

Hope this helps.

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In Sandra's name we must follow the rules of lockdown and social distancing to get through this nightmare.
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Epilepsy 2 months 3 days ago #3721554

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I have two grandchildren with epilepsy so I know how it inflicts on everyday life.

Yours being caused by a congenital cavernous angioma is an added impact and one I can’t imagine.

I agree with Habibi’s suggestion of joining an Epilepsy group, as sharing you thoughts and feelings with those who are going through the same or similar can be a great comfort in knowing that you are not alone.

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Happy to help.

Epilepsy 2 months 3 days ago #3721654

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Yes. There are some Facebook groups and dedicated Epilepsy sites I belong to. Epilepsy is different for everyone. Some have it from injury, some from tumor, some from childhood fever, and on and on. Likewise, the meds and treatment to manage it are huge in magnitude. In addition, I see a psychologist weekly to manage the depression. Epilepsy management affects meds for treatment of other ailments too. The pandemic has negated local support group meetings. Thanks for the suggestion!

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Epilepsy 2 months 3 days ago #3721974

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my girl friend's son has epilepsy.
he used to suffer seizures in some dangerous places..
while crossing the road..
swimming..
etc
meds have helped him some. . but he *always has someone with him.

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for 25cents i will stop singing.
BUT. if you sing with me, i will give *YOU 25cents
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