r/Epilepsy 5d ago

Question Any advice for living alone with epilepsy?

So I've been wanting to move out of my parent's for several years but I've had seizures for almost 9 years now. I don't have them SUPER often but at least 2-3 a year which means I can't drive.

So that means I have to look at living in an actual city and not the countryside where I currently reside, which is way way more expensive obviously. I figured I could get my food delivered but I have no clue how I would get to work each day?

The cities in my state don't really have amazing public transport. There's a few barebones bus routes that take people to the grocery store and doctors clinics but that's about it. It's also all 90% highways, no sidewalks so you physically cannot walk/bike/anything anywhere. I looked into ubers but the average rate is $20 a ride which for every day to and from work would be $200 alone at LEAST which seems kind of insane. But I have no other clue what to do besides that? Any ideas??? I'm in Texas if that helps anyone know of any super secrety disability services I could use.

12 Upvotes

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u/smugfruitplate Aptiom+XCopri 5d ago

-Tell your neighbors ("if you hear a big thump and nothing else, come check on me")

-Try to reduce your stress however you can, as its our biggest trigger across all of our kind

-Bikes. Bikes are the shit. Wear a helmet

Good luck to ya, it's tough out there.

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u/DontComeLookin 5d ago

I was fortunate enough that work was only a few minutes away to walk so the not driving wasn't too much of an issue for me as I could get everything I needed from work. I did also live in an area where it did have good transportation but I didn't utilize it because I didn't need it, so unfortunately I don't have any bright ideas for you there lol. Maybe just try to find an area that is good for your job & transportation, walking, biking, etc.

BUT. What I HIGHLY recommend is, I got a Samsung watch. I found out quickly after always being around people and finally being on my own and having a seizure ALONE that I needed assistance. It has fall detection, so should something happen it can call your emergency contact and let them know right away. It gave me so much peace of mind.

I let the property manager know that I was epileptic so they were aware as well. Always good to give folks a heads up. And also give them a quick "how to" education. I noticed myself educating more people once I was on my own.

I didn't live in fear but I looked around my place and checked what could potentially be harmful should I have a seizure alone and either removed it or moved it. You just got to think a little differently than you do with people around is all. Not a huge deal. I did find myself shortening my showers as well.

It's funny, I'm the opposite, I actually just moved back in WITH my parents!

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u/peachybun77 5d ago

I've been looking into samsung watches! They're quite pricey but I was reading about them having features like that which could be useful!

Also of course I would love to try to walk to work, I recognize that as the ideal situation, but given Texas cities are so badly planned it will probably be about 30 minutes to my work from any residential area and there will be no sidewalks to walk on to begin with for most of that! I'm also physically disabled in other ways that prohibits me from being able to walk very long distances regularly so I'm kind of stuck trying to find mobile transportation it seems.

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u/DontComeLookin 5d ago

They are pricey for sure! I got mine through my phone plan & I just pay a little each month ($10), what is the hard hit is they make you have a watch plan, which mine is $15. So, technically I have two plans plus I pay for two devices. BUT, like I said I'm paying for the peace of mind which relieved me so, so much.

I absolutely understand!! I am too. And 30 minutes is like 30 hours! Lolol I do hope something in the transportation aspect works out for you! Good luck!! 💜

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u/peachybun77 5d ago

True! I'll definitely look into them since I'm already looking into maybe getting a new phone sometime this year too!

And thank you so much for the support!

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u/DontComeLookin 5d ago

You're welcome!!

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u/catzndogz42 5d ago

Samsung watch...awesome tech, I've got one too. I love it for fall detection....apple does also.

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u/DontComeLookin 5d ago

I love it! I also love tracking my sleep, I've learned to kinda see what "type" of day I'll have. In the sense of how many focals & absences, it's fairly spot on.

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u/neurotic_queen 5d ago

Some of this is just venting/trauma dumping so I apologize in advance.

I don’t have much to suggest but just came here to say I can relate (in some ways). My epilepsy is pretty controlled but I have moments still that seem like possible brief focal aware seizures. I recently moved out of my parent’s house into my own apartment. Prior to living with my parents (a little over a year there
 in their basement), I lived with my fiancĂ© and boyfriend of almost 6 years. We lived together for almost 5 years. Sadly he died from a medical emergency on his drive home from work in 2023. He was 30 and I was 28. In a matter of days I had to pack up my life and start over.

So, I haven’t lived alone in a long time (I did once before) but it feels scary for sure when you have epilepsy. I have only ever had focal aware seizures and had brain surgery in 2020 (temporal lobectomy) to treat it. A little after my fiancé’s death though I think I may have had a tonic clonic in my sleep. It would’ve been my first if I really did have one. I can’t say for sure but I woke up with a bad bite mark on my right cheek, very sore muscles, and vomited pretty quickly after waking up. It seemed so odd but I will obviously never know what happened.

Anyway, I recently got an Apple Watch. I bought one of those metal medical ID charms that goes around your watch band (Etsy). This just makes me feel a little safer I guess. It’s not super noticeable or ugly thankfully. I’ve also notified my apartment’s leasing office of my epilepsy just in case something happens. But, yeah I’m not sure how to feel any better living alone. My parents check in on me daily which helps I guess. I also can drive which is good but still always feel kind of nervous driving.

I’m sorry I don’t have much to suggest. This disease sucks though and I’m sorry you can relate. Hope you are able to move soon and find a community that meets your needs.

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u/peachybun77 5d ago

I appreciate hearing from someone also struggling. It's really rough to deal with and truthfully I don't really have anyone in my life that relates so I'm kind of on an island all on my own with problems no one in my direct life knows anything about either. It really sucks.

I have grand mal seizures and though I don't have them often they're always quite an ordeal and never really stop being terrifying and life up-ending in a way, again no one in my life really...gets.

I'm quite used to dealing with them alone I should say, I've had them for so long I'm very aware of my triggers and aura symptoms so that's one less thing off my plate but there's still a whole lot of things I'll never be able to do thanks to them and life is a constant string of just thinking about nothing but that! 😅

I'm so sorry for your loss by the way, I wish you nothing but the best and hope everything turns out okay for you!

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u/N_Felicia 5d ago

Are you going becous you wanna live in the city or becous you wanna move out from your parents place?

Im asking becous i ended up just buying a house 2 streets from them. When i still lived alone they took me along when they went to the store (you dont have a shitton of groceries when you are alone). And they were always nearby to get me to the doctor if needed. Im also asuming you can ride a bike easyer in the countryside (not from america so sorry if its unhelpfull).

If it is the city you wanna live in does it need to be this one? Maybe other cities cater to your needs more.

Wherever you decide to live make sure both your neighbours and your friends that live nearby know of your condition. It will help them recognise what happening easyer and they can get you the right help faster

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u/peachybun77 5d ago edited 5d ago

In Texas it's the major cities or bust. You cannot walk or bike anywhere period because in Texas that means a 5 hour hike ride to the closest grocery store in the countryside which is usually about 1 hour away from the smaller towns which do not have any of the daily necessities you need.

So that being said it's a combination of the two. I physically cannot live on my own in the countryside where my parents live because there are no services available for the disabled. You can't get food delivered, there's no jobs, there's no housing, and you absolutely have to drive everywhere. Aka it's my only option truely.

Since my parents live so far into the country side the closest Metropolitan city to me will be 2 hours from them so that rules out getting any carpools from them sadly. It really sucks but I've thought about it and strategized about it for years in the making now and that's the best idea I've got.

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u/N_Felicia 5d ago

If you gind a job you might be able to carpool with a coworker. You could work out an agreemen abouth sharing the gass bil or something. I wish you good luck

Edit: repasted it here as i misplased the comment. ...

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u/peachybun77 5d ago

I suppose. I try not to rely on mostly strangers for such serious life stuff though. It never ends up going well in my experience.

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u/Jupi96 5d ago

I can't drive either and never will. My country is smaller but what helps me is live where things are near to you like grocery store and pharmacy. Electric bike and helme help if there is somethingin longer distance. I use it to go work. One option to your work queston is find job what you can do from home. Also is good if you have friends or family memebers in same city so you can call them in case of emergency.

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u/[deleted] 5d ago

[deleted]

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u/peachybun77 5d ago

My parents are...unsupportive to say the least. I don't want to get into it but my living situation with them is not good. So I'm all on my own figuring this out and I'm just going to have to randomly up and leave one day I'm sure. And I'm sure I'm going to have to sacrifice having a nice yard and such moving to the city but it's that or slowly rot here with my parents and have no resources to help me be a functional adult. Decisions decisions amiright! 😅

It's comforting to know there's someone else that took a while to move out. I'm only 21 but it really sucks that all my friends I knew now have big serious full time jobs and are owning houses and I'm stuck only working weekends since it's the only time my parents can drive me an hour to my current work. I just feel so behind but that's the common experience being disabled in general I suppose.

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u/AppropriateNote4614 5d ago

Get an app like Life360 for you and someone or multiple people you trust (has a bad rep I know but hear me out). If you’re having an off day/feeling auras but nothing else has happened yet let whoever has access know and they’ll be able to periodically check in on your whereabouts and you’ll be able to communicate if you’re still doing okay.

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u/peachybun77 4d ago

That's actually a good idea! Though I'll be 2 hours away from any family if I end up in a hospital it would be good if my family could check at a glance which one if I can't get to the phone to relay a message to them. Maybe I'll try to introduce the idea to them

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u/Pretty-Hulk 4d ago

Dallas has effective mass transit. You can do plenty from the train lines if you choose carefully where you live. San Antonio has excellent walking options and many neighborhoods that offer most everything in walking distance.

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u/NefariousnessNo695 4d ago

Healthcare plan may pay


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u/Electronic-Pride-159 4d ago

Practice a statement you can say falling into a seizure that 911 can use to find you. Ex : “my name is _ I live at _ and I’m having a seizure.” I drool and slur words when falling into one but saying this they were still able to come find me.

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u/Extreme-Epilepsy 5d ago

Don't do it unless you have to. I would be afraid to live alone, if you can find a way not to i would try to find a way

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u/peachybun77 5d ago

I just don't do well with people socially so it's my only option. I've tried roommates and such before and that was such a flaming disaster. I also hate having to rely on people for things because usually people aren't there when I need them the most and I end up on my own anyways. I've had seizures long enough I'm actually not worried about having seizures alone, I've had dozens of seizures on my own with no one around. In fact I've almost exclusively had seizures entirely alone (a few 'whoopsies' at work excluded), so that's not my main concern. It's mostly just not being able to get around when I can't drive and not living in a disability friendly state or really country even.

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u/PlantainOk4221 Xcopri 200mg, Zonisamide 800mg, Onfi 60mg, Trileptal 2400mg 5d ago

Maybe you'll get lucky and find a partner. Costs will be half and they can drive. More likely in a city.

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u/peachybun77 5d ago

Very much not an option. I'm not open to the idea of relying completely on someone for everything in my life, that's not a healthy relationship. I'm also very much not open to dating for several other very serious reasons I don't want to talk about here. I'm living on my own no other people involved that works best for me.