Living alone with Epilepsy

bmark0610

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Hi folks,

New to the forum and recently had a spell of seizures creep back up again. In college, back in 06-08ish, I had a few seizures and was put on medication for about 5 years or so. I had EEG's and tests done and nothing showed up. I eventually came off the medication and have been for about 7-8 years with no signs of a seizure. Fast forward to January of this year and I got into a really bad car accident where I blacked out and broke my back and was in the hospital for a week. The doctors didn't know what caused the black out until one day in March I was walking home from work and I had a seizure on the side of the road and someone riding by called the EMT's. My neurologist has since has put me on 100mg Topiramate twice a day.

So I am just wondering do any of you live alone? How do you cope with having seizures?

Thanks
 

Nakamova

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Hey bmark, welcome to CWE! :)

I live alone, but my seizures are currently well-controlled, so being on my own isn't as problematic as it might be for others. But in the past even when I was I having seizures I didn't live any differently than now. I do have folks I can call if I come out of seizure and need help, which I think makes a huge difference.

I'm comfortable walking or swimming on my own, but not everyone would be. I think it can depend on your level of seizure control and what kind of local support you have in terms of friends/family/neighbors/EMTs. It's a balance between feeling safe and feeling independent, and that balance point is different for each person.
 

CQ:)

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Hi BMark
Welcome to the forum

I have focal seizures which are currently 90% controlled with the help of medication & brain surgery. Prior to my surgery the partial seizures werent controlled.

I have always lived alone but have precautions. My Mum lives 30 mins away so I speak to my Mum daily.
I have a medic alert bracelet and an I.C.E app on my phone with all my medical info including who to ring if i had a seizure done the street. I have the medic alert card in my wallet but its a 2nd option & quicker way if the hospital need to ring my emergency contacts quick.

Where I used to live i was friendly with one of my neighbours so she had my key and used to check up on me.
But I moved nearly 4 years ago and I have never had anything to do with my neighbours , except to say Hi but my best friend lives in the next street and Ive told her where I keep a spare key.

I have never been succeeded in swimming but like Nak I'm comfortable in walking & I walk everywhere.
 

Porkette

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Hi BMark,

Welcome to the forum! Just like you I was in a car accident and hurt my back and my seizures increased for awhile my neuro
told me it was do to all the stress.
I started living alone when I went to boarding school in my early teens and I had no family around me at all they were in
another state. I learned to live just like everyone else does and I don't let my seizures stop me. I have both absence and
complex partial seizures. I had surgery to reduce the seizures but just this month I had 8 seizures and after the seizure is over
I just carry on like nothing has happened. I've let all my family and co workers know about my seizures and they have accepted
it and if I have a seizure at work they will just ask me if I'm okay after the seizure is over.
I've even been asked to teach college students about epilepsy and I have to go to a college twice a yr. and teach them
about seizures and what to do if a person has a seizure along with treatment for seizures and surgeries they are doing today.
I wish you the best of luck and May God Bless You!
Sue
 

resaebiunne

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I used to live alone. I was a full-time engineer, working full-time at first, and then later I became a contractor (NEVER EVER DO THAT).

I know the day will come that I will probably be on my own again. However, I was looking at something here just a moment ago that could prove to be quite useful if you live alone. The Amazon Echo Connect can dial 991. Unfortunately though, you won't get any help without being conscious enough to speak to alexa and dial the number, but it's better and cheaper than those emergency button thingies that you hang around your neck (which are also no good if you're unconscious).

That said though, camera technology has come a long way too. You can buy several cameras and link them with Alexa and your family and friends could monitor you remotely to make sure you are okay. This sounds like a really good business opportunity come to think of it. Think of it as "ADT" for epilepsy ;)

But yeah, it's rough. I lived in Austin for 3.5 years and my health started to decline after about 2.5 years there. First it was my mental health, and then later, my epilepsy came back with a vengeance.

Now that I live with my family I feel pretty secure and much less anxious. I no longer work, and haven't for over a year now. I'm back in school for biology and then a PhD in neurobiology. It's sort of like, studying yourself, quite literally, but not with the intention of becoming a doctor, but rather, at least in my case, wanting to do research.
 

Topcat

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I live alone: Although I possibly had focal seizures (most likely) before it, I had a car accident because of it I had a closed head injury and I started having very severe seizures of all types. After I recovered from my other injuries, less than a year later I moved back to my own house. Even though at that time I still had very severe seizures I was able to live alone. Family members called me and my online friends got worried (I've now been chatting with some them for over 20 years). If they don't see me around the internet for several days they ask my sister via Facebook if I'm okay.
I still continue to live alone. Fortunately since I had a VNS implant I no longer have seizures that are as bad at least not as frequently. If I had them worst who knows? Maybe I wouldn't live alone.
Living alone might be stupid and kill me. But I'm stubborn, If I wasn't that would be dead.
 

Loopy Lou

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I live on my own and have done for the last 10 years or so. My brother lives about 5 mins away and has keys to my flat.

I've had problems such as injuring myself when cooking or falls in the shower (which i don't think are actually seizures, i think the change in temp makes me dizzy sometimes). Mostly i just get on with things. I'm usually in contact with people through messenger/text etc so if they haven't heard from me for a while they'll be contacting each other and me.

I do wish i had someone to go swimming, the gym etc with as i don't feel safe doing that on my own, but my brother who lives close comes with me when i go shopping :) My seizures are semi-controlled but i don't have confidence enough to do everything on my own.
 

Topcat

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My sister calls me once a week and we usually go someplace during the week. She takes me shopping etc.
 
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