Living Alone

[unknown_user14]

Does anyone have any tips for living alone/ finding roommates when you have epilepsy? I have recently moved out and my epilepsy has returned with a vengence. I have a seizure alarm and have taken lots of steps to make my space seizure friendly but I still get scared. I've thought about trying to get roommates but I don't really know how to talk to people about it.

 

[XxBlaqkxX]

This topic gives me chills, it's a scary thing to think about when you have epilepsy.

As far as living alone, things I've heard are are generally things we may already be doing with epilepsy like:

-Taking showers instead of baths (don't get in the tub at all if you feel off, too tired, or like something isn't quite right).

-Don't cook if you feel off/use auto-shut off devices (some people say use the microwave instead of the oven...but I don't like microwaves and don't feel they are safe, but I think the point is having something that turns off on it's own unlike an oven - I like crock pots with auto shut offs and such).

-Finding a place without stairs/on the ground floor is ideal.

-Finding a roommate that understands your situation is also ideal. Make sure to be honest upfront, talk about it, and see if that roommate would be a good fit. I don't think it does much good to find a roommate that doesn't know about your epilepsy because then they won't know what to do if something happens or they'll flip out or do something that might trigger your epilepsy.

-Know of someone maybe you could check in with once a week or so.

 

[unknown_user14]

Thanks for the advice. My building has been very good at making my apartment safe without many questions so I'm able to shower and my oven already had a timer in it without me having to ask. It's scary though especially with the lack of awareness; I don't wanna trauma dump on people but then at the safe time I don't think it's fair that I move in without someone knowing and I'm still scared that I'll have a seizure in my flat and get injured and no one will be able to help me. Idk

 

[CQ:)]

Hi Unkown
My seizures are focal and I was already living alone when my seizure returned 20 years ago.
-My parents are 39 mins away so I had a neighbour who I was friendly with and she had spare set of my keys.
-I ring or message my mum most days to let her know I’m ok
-I used the stove top but never used the grill (think the Americans call it the broiler), I have a habit of checking the oven before I go to bed.

I’ve since had brain surgery so I are about 85% under control at the moment.
I moved 6 years ago, where I live now is round the corner from my best friend and she has set off my keys so can get in if there is an issue.
-I now have an air fryer which I cook most things in so don’t use the grill or oven at all, just the hot plates for vegetables
- I used to have a camera but it wasn’t picking things up actions properly
- I have both a shower and bath in this place but prefer to have shower

 

[XxBlaqkxX]

Thanks for the advice. My building has been very good at making my apartment safe without many questions so I'm able to shower and my oven already had a timer in it without me having to ask. It's scary though especially with the lack of awareness; I don't wanna trauma dump on people but then at the safe time I don't think it's fair that I move in without someone knowing and I'm still scared that I'll have a seizure in my flat and get injured and no one will be able to help me. Idk

Your concerns are ones that a lot of us here have had.

I remember becoming roommates with one of my husband's siblings for a time. While it was only about a year, I did say what my medical condition was, but it doesn't seem she was phased by it (she worked in a hospital). So, I barely had to say anything, and I thankfully didn't have any incidences while living there.

I didn't trauma dump much, I just said what I had and didn't keep talking about it - didn't feel the need to as it was well controlled at that point.

 

[unknown_user14]

See that's what I'd normally do but now I'm having more myoclonics people are starting to ask questions. As soon as they hear the word seizure they very panicy and concerned or just exude pity which doesn't help my anxiety. I've always been a very independent person so having to properly explain to people how I feel and the best ways to help me with my disability(just making sure that I am safe during seizures) is quite hard for me.

 

[XxBlaqkxX]

See that's what I'd normally do but now I'm having more myoclonics people are starting to ask questions. As soon as they hear the word seizure they very panicy and concerned or just exude pity which doesn't help my anxiety. I've always been a very independent person so having to properly explain to people how I feel and the best ways to help me with my disability(just making sure that I am safe during seizures) is quite hard for me.

I hear you =( the instance I described was like a bit over 6 years ago now...

These past 2 (almost 3 years), I've been struggling with more auras, tremors, and a lot more nocturnal epilepsy, which has been terrifying.

I remember my arm uncontrollably moving throughout an entire meeting...and people noticed, it turns out (of course), but only one person said, "What's going on? Are you okay?" and for like 2 or 3 days after that, I had muscle tremors on and off. After that meeting, I was crying because my muscles hurt so bad from trying to stop the uncontrollable movements. It's been a battle and people definitely do ask questions or make comments.

It's one thing when it happens around a person and another thing when it doesn't...people react sometimes unpredictably...

I think honesty is the best policy if you are living with another person. You don't want them to see something totally unexpected.

 

[Porkette]

Hi unknown,

I have learned to be very open about my seizures and explain to them what would happen. I have both absence and complex
partial seizures. I've lived on my own for over 30 yrs. plus I went to boarding school in my teens and that's when my seizures
were a lot worse.

If you are open with a person about the seizures I have found that it won't bother them that much and when I've had seizures
they understand with no problem.

I wish you the best of luck and May God Bless You,

Sue

 

[Matthew74]

I live alone. It depends on whether you are safe, and if you feel comfortable. If you are just unsure of yourself, you might get used to living alone. If you aren't comfortable, that's ok.

I would suggest looking for a roommate that doesn't have epilepsy. If it makes you more comfortable to have someone with epilepsy that's ok, and it could work great. On the other hand it might also add stress to your life. That doesn't mean that people with epilepsy are a "burden". It's just that you may be maxed out already. If your epilepsy got worse when you moved out, you may be struggling with things. What you need is peace and security. Whoever you room with should help with that.

Some people will have problems with epilepsy, others will be fine. You will be able to tell by their reaction. I never had a problem with a roommate. I HAVE had problems with other people, but not a roommate. I mostly found roommates that were people I already knew. Some I didn't know very well, but they were in my larger "circle" of people. There were few I got "stuck" with didn't go very well for other reasons, but not because of epilepsy. (I went to college a lot.)

My suggestion would be to let people know you are looking, but don't necessarily "advertise". Look for someone that you already feel comfortable with. When you bring up epilepsy be sure to be specific. Most people don't have a clue what it means. They only know what they saw on some film in elementary school, or on HOUSE. For example, I don't know what your epilepsy is like. Most people will be concerned with "what they should do", or how it will affect them. Avoid giving in to the feeling that you need to over explain or be apologetic, if you feel that way. Just tell them what they should know as an equal partner. Remember that it's ok if someone isn't comfortable with it because then you will know that it's probably better not to room with them. It doesn't mean you can't be friends.

 

[Sabbo]

Hello. The only time I truly lived "alone" was while I was in the dorms in college--& that was because commuting to & from Chicago daily was too hectic. But I came home every Friday with my father, who was the director of a hospital's anesthesia research lab.
I have now simple & complex partials (those started about 23 years ago). I haven't had any since replacing Topirmate with Xcopri, otherwise I'd average 1-3 breakthrough complex partials/month--& that was while taking 400MG Topiramate/day along with 500MG Zonisamide (which I still take). What's important now is to see how long this seizure free period lasts. It has happened many times before--I'll add a new AED, and be seizure free for 6+ months. Unfortunately, within a year, though, it's as if my brain becomes "immune" to the new drug, & the seizures start again.

I'm also open with people about my seizures--what type I have and what to do in case of one. It's especially important since I am completely unaware of my complex partials--I don't have any auras. Without witnesses, I only know if I had one due to an injury or if I see that something is wrong/out of place, or if a completely different show is on TV.

 

[Sabbo]

The seizure-free luck with the addition of Xcopri only lasted about 3 months. I had a complex partial on Friday, 9/30. My younger son & mom saw it. I was on the landing of my basement, between the 2 parts of the stairway. I fell against the corner so hard that I cracked the drywall. On 10/16, I raised my Xcopri by 50MG/night for 2 weeks to see the effects. I have a 48 hour ambulatory EEG beginning 11/7.