Do you know anyone that has had any seizures and how they handle them?

My husband was diagnosed with general epilepsy. He takes Keppra (pill) after several and almost a grand mal, and leads a normal life.

Fun fact: About 10% of the population will have seizures with no identified reason.

Due to an overdose of Vancomycin, on purpose, by my Infectious Disease doctor, I had 3 seizures. He O’D’d me on purpose because I had MRSA and Sepsis in my bloodstream that had landed in my spine and was paralyzing me. But it made me have seizures. I honest to God thought I was dying. I prayed very hard and once I could get my brother on the phone, because of the seizure I couldn’t dial a phone. I was at home at the time. Insurance reasons made them discharge me too early.
Anyway, my brother got me back to the hospital and I’m fine now. No seizures after that, no after affects and I am no longer paralyzed. This was in 2017. I walk as much as I can, up 4 flights of stairs to my car a day, and still try to get in 10,000 steps a day.

@chyna Wow, inspiring Wonder Woman!

@chyna I am so happy for you to survive and have such a great attitude. Did your doctor have to make you OD? That seems extreme to me. I also make sure to get 10k or more steps per day. I’m always doing stuff anyway but I do wear a fit bit to keep track of it.

My aunt was the director of the epilepsy foundation in NYC for years.

She pioneered the idea that dogs can tell when their owner is about to have a seizure.

Some people with epilepsy have dogs to help protect them if they have a seizure. The dog can bark for attention and keep bad people from trying to rob them (horrible to have to consider that).

There are drugs to control seizures, some people have good luck with them others don’t.

If the person has uncontrolled seizures then they usually can’t drive, so they become dependent on public transportation or friends and family to get around.

It’s actually not that uncommon for infants and very young children to have seizures with high fevers. I did with one illness. I was a master at running very high fevers.

Some seizures are very mild, like staring at a wall, and some or very severe, and there is everything in between.

In some extremely severe cases where it’s constant they can remove half the brain, hemispheric surgery. It’s very rare and obviously very radical surgery. I think they only do it in very young children, possibly only infants, I’m not sure, who can train other parts of the brain to to compensate for the missing parts.

Some families wind up putting their epileptic children in care facilities when it’s very severe, but that’s rare.

@JLeslie We are considering getting a dog, I hope he gets along with my cats.

@RayaHope Yes, he did it on purpose to save me. You should have seen my legs. For some reason, the drugs affected my legs and they broke out into huge blisters. It was horrid. And I still have the scars, but am so happy to be alive and able to be so active and alive.
Thank you @KNOWITALL, but it was doctors who saved me.

Marijuana helps my husband, it’s legal here. Helps him sleep and reduced oral medications. No it’s not all bongs and edibles, there’s oil, tinctures, etc…
My FIL took tincture and felt his legs for the first time in two years! Early Parkinsons.

@JLeslie My uncle had an “alert” dog that alerted him to his seizures from epilepsy. He saved him many times. Your aunt was in a very noble position.

@chyna Scary! Sounds like you were given a large dose not an overdose. It saved your life. Vanco usually has a lot of bad side effects. Thank goodness you are ok.

@RayaHope If it’s a specially trained companion dog I think it will get along with your cat. Even if it’s not they might get along.

@chyna There used to be a video of my aunt online talking about her observations of dogs alerting people with epilepsy, but I can’t find it anymore. I might try again. I think it was an interview she did.

@RayaHope The dog & your cats will work it out & be just fine!!! Might take a bit of training, but it can be done!!!

@chyna

“He O’D’d me on purpose because I had MRSA and Sepsis in my bloodstream that had landed in my spine and was paralyzing me.”

May I ask you how got those infections?

Worked in psych hospital in1960s we had a patient , if he heard Crimson and Clover would go in into seizures !

I loved that song…glad it never affected me like that!!!

Many people with epilepsy have to avoid flashing lights. My teenage years I spent many many nights in nightclubs with flashing lights. I loved it. I can’t imagine if I had had to worry about it when I was young.

@Brian1946 Very good question! We never figured it out. I was not a drug user, I was not having sex, my only “unsafe” practice was that I worked in a hospital. One of my doctors thinks I may have gotten it from a dental procedure I had in the weeks before it showed up. We will never really know.

@chyna I heard that sepsis can be contracted pretty simply at hospitals. It don’t take much to get infected. You doing great now is what matters most and you do NOT have regular seizures to deal with. :)

{hugs} to @chyna. Glad you’re still with us. We need animal lovers!

There are various type of seizures and many many reasons for them.
They need to be reviewed and diagnosed by a Dr. for what is causing them.
When I was in my 20’s, I awoke because I heard an odd noise. I went to the kitchen to find my then fiancé having a Grand mal Siezure. A grand mal seizure causes a loss of consciousness and violent muscle contractions. It’s the type of seizure most people picture when they think about seizures.
After making sure she was not hitting her body on the floor or cabinets, I called 911. A CAT scan and MRI later reviewed an inoperable cancerous Brain Tumor. After a year of several surgeries, Radiation and chemo therapy, she passed away.
Take the time to get a Doctors professional assessment.

@Forever_Free, Oh what could I say to this, so sorry you lost her. To fight so hard and not survive is tragic and terrible. I am afraid of this sort of thing happening. I am so glad my mom knows what to do every time.

Years ago I had epilepsy but things changed when I had my son. I haven’t had a seizure for almost 40 years now. Since mine developed after a very high fever as a young teen, it probably just caused some temporary damage that got fixed after pregnancy. They say that childhood epilepsy has a higher chance of disappearing on its own. After 2 years of no seizures, it can come back or totally disappear on its own. I’ve taken no medications since I was pregnant with my son.
Now I get why you and I understand not liking the lack of control. It was the one thing back then that I hated about seizures.
Everyone walks around you like you are a fragile egg that is going to break.
Doing anything that may seem to tired you if frowned upon by parents.
Friends will disappear because they don’t understand epilepsy, or they too will either treat you like a fragile egg as well or not understand when you shouldn’t do some things. Like drinking or doing drugs or hanging out all night long or going to a party where people are smoking pot and you can’t risk a contact high or doing very stressful stuff that can trigger a seizure.
But mostly, it’s about feeling betrayed by your own body and wanting to feel normal. Hating having to guess what people think about you in regards to your condition. Wondering if they stick around because they pity you or do they like you.
All these things I thought. As a young person you feel like a freak. Then one day, I decided not to care what others thought. I am what I am. Not perfect but then no one is and I learned to appreciate the good days and worked hard between medications and taking care of myself to have a normal life. But I guess my husband did help with that. When we started dating I told him and expected him to walk out the door like so many other would be boyfriends of the past.
But he asked me to explain and what would happen and what should he do and I realized, there was no pity look, just a bit of concern and no fear in his eyes either.
He just looked at me like he still wanted to date me and no ailment was going to get in his way.
Most people look at the ailment and stop seeing a person with feelings.
Anyhow when I told him I understand if he wants no part of it, he said why? I was still me and the epilepsy is no big deal. He said he wasn’t going anywhere. I think that’s when I knew for sure he was the one.

@RayaHope Thank you for your kind words

@Pandora OMFG!!! OH, You understand me! Oh, I can’t tell you how HAPPY I am right now I can hardly type. I am so glad you found the right guy and he is a keeper for sure. My mind is racing so much right now… I want to (((HUG))) you so tight! I’m NOT alone.

@RayaHope No, you are not alone. Many people with this condition or ailment and other ailments understand how the world sees us and how we see ourselves. We see ourselves as normal until our body betrays us or how others perceive us. But I will say, having given birth to a daughter with severe asthma, I understand how my parents felt. They feel betrayed by God or nature, whatever they believe in, and guilty at the same time. They wish more than anyone that they could fix you. They wonder if they did something or could’ve done something to make you be born healthier. Not so much for themselves but for you. They want what you want, so they overcompensate by treating you like a fragile egg that they have dropped.
So don’t do what I did. Take it easy on them. They feel they should have all the answers and solutions for you and are failing. Especially when you feel denied a normal life.
If you can be honest with them, tell them everything above and tell them not to feel guilty or overly concerned because you know the dos and don’ts and won’t do anything to jeopardize your health. But it’s bad enough to get pity from strangers. You only need their love.

@Pandora Reading your answer got me overstimulated and I had to log off for a little while. I have to watch that. Thankfully I did not seize but I did feel a little deja vu coming on. I don’t know anyone with my condition but my mom and siblings know what to do if/when I need them. I need to be calm and not get so excited sorry I got so worked-up over this post.

No problem. I well remember the deja vu feeling. When I use to feel that way, I would just go take a nap. Always stay hydrated, make sure you get at least 8 hours of sleep, and never, ever let yourself get overly exhausted or hungry. Don’t skip meals and of course, take your meds. My worst seizures happened when I would skip a meal and either overworked or stressed myself. So I promised myself to always eat something when hungry and stop whatever I was doing and take a nap if I felt tired. It’s good that you know excitement can trigger you but look to see what else can. If you had a bad night’s sleep the night before, then throw in a nap that day. Fear was also a big trigger for me. Sometimes I would get warnings and other times not. It’s great you are getting a dog. That will help with the fear factor. Oh, and lights. I once had a seizure at a train station. I got the halo effect but it hit me before I could do anything to get me somewhere safe. I remember being terrified that I would walk off the platform or fall downstairs. Anyhow, I had a seizure and a cop was called. He asked for my number and I couldn’t remember but I was so embarrassed I told him I was fine and would go home. I remember telling him that and then blanking out again and apparently, I ended up a few blocks away from the station. I had to ask strangers where was I and what was the closest station. They helped me out. I was able to remember I was visiting a friend and her husband was smoking pot and that is why I left to go home. My mind was still fragmented but I remember I needed to take the train to go home. I prayed I would remember the station I needed to get off and I did but I still didn’t remember my direction home. Then I was able to remember my phone number and called home and my mom sent my brothers to go get me and bring me home. I spent the next whole day in bed.
The bad seizures would leave my body so sore and this was a bad one.

My friend has petite mal. He functions fairly normally through them, but then has little memory of the past few minutes and is tired. Most people might not even know he is having them, He just has a bit of a dazed look like he needs sleep.

@Pandora My dyslexia read your part of this post when you said you were at the train station and then it hit you I almost lost my breath. I reread it and was relieved that the halo effect was what hit you. That would be so scary out there by yourself and not knowing where you were. That happened to me driving home one day (I should have NOT been by myself) I could not find my street at all. That wasn’t a seizure but it scared the crap out of me. I think Grand Mal’s messes my head up and I’m afraid it will do permanent damage to my brain one day. I can usually tell when I’m about to seize because I get this kind of out of it feeling and then my mouth will start to twitch and pull to the side. My breathing becomes jerky and I start to drool. I hate that so much! I don’t want to say any more about that it can become kinda graphic and bad. I hurt all over after I come out of it and most of the time have a bad headache.

Yep. That is what happens. My uncle has had grand mal seizures for years and he’s still pretty okay is 74. But I was worried about the same thing. I still wonder sometimes if the seizures did long term damage. When I was in school, I had a sharp memory and could understand anything thrown my way. After a few years of seizures, I notice a decline in how rapidly I absorbed new material and how long I would retain it. Now it could be that subjects just became more difficult as I aged but there were times I zoned out in class. It could’ve been mini seizures or maybe the effects of the medications but I will never know. I think that is what drives me to keep learning in hopes that I don’t forget. Now my memory skills are slowing down somewhat more and again I wonder, long-term damage or aging or just hormonal decline? I think it’s also why I am fascinated with the human body. I’ve spent a lifetime trying to understand my body and how it works.

I thought people need to be seizure free for 6 months to be allowed to drive?

@JLeslie I was seizure free for a couple of months so I talked my mom into letting me take the car. I felt fine and she knows that I do get a warning before I start to seize and it was only a mile away from home so I also wanted to show her I can be independent. I know it was stupid and I’m not as independent as I was hoping. She makes sure I am never by myself and she does all the driving or my older brother.

@RayaHope Not being able to drive must be very frustrating. Being close to home doesn’t matter, but a lot of people feel safer close to home, or feel like the risk isn’t very big since they are only on the road a short time. Close to 70% of accidents happen within ten miles of one’s own house. I think it’s something like 25% within two miles. I don’t remember the two mile one exactly.

That’s good that you get a warning so you can pull over or if you’re standing you can sit down or even lie down so you don’t hit your head.

@JLeslie I am so much more cautious in public and in school. Everyone knows about my issue and they do make concessions for me like being by the door in class if I have to leave real quick and having someone with me if I need to go to the nurse’s station. I did have a bad seizure in class once and I felt embarrassed after I came around but they were very supportive and that helped a lot. I do feel like I want to be independent but fear that may never happen. I want to be free of this so bad.

@RayaHope Hopefully you will “grow out of it.”

Do you take medication for it?

@RayaHope My husband is a totally different person after his seizures. Not in a good way. He has anger issues and short term memory issues, as well.
I feel for you and hope yours are under control.

@JLeslie I take Keppra and Trokendi XR but we are trying to see if after a few tests if I should try something else.

@KNOWITALL I feel for your husband and I know this is hard on you too. Caregivers a the unsung heroes in all of this, if I didn’t have the support I do I don’t know where I’d be without them. I know we are the ones with this terrible disorder but family and friends deserve a lot of praise for doing what they do.

@RayaHope You can’t help it, so don’t get down on yourself.
When he had the first big one, he face-planted on a pile of treated lumber. Hard. He can watch a movie tonight and not remember it the next week, just odd things so I do handle his meds and we seperated financially.
I almost divorced him a few years ago but trying to hang on. Its tough because I know its not his fault.
Best of luck to you.

@chyna I’m so sorry you had to go through that. But so glad that worked! I haven’t heard of ODing on purpose (versus just prescribing the drug).

@Forever_Free I’m so sorry. What a horrible thing to witness and even worse what came after. My mom is still doing radiation. Another friend just posted the other day that the treatments aren’t working. I’ve lost count of how many friends and family we’ve lost to cancer. Cancer can go fuck itself.

Reading this post has been a bit of a roller coaster. The reminder of how far science has come and also how much is out of our hands.