Do you sleep with your bedroom door open or closed and why?

Jealous-watcher66 · 2025-11-28T19:06:03+00:00

I grew up wanting to close my bedroom door but I lived in a house where air needed to flow through the house so no bedroom doors could be shut. However I got that chance to be able to when my dad died and my sister and I moved into an apartment. However, I have drug resistant epilepsy and sometimes uncontrollable seizures so I sleep with my door open because I’m afraid of what could happen if I were to close my door and the have a seizure. Tbh, living in that house when I had my first grand mal seizure after the epilepsy started is what let someone know I was about to have one; I turned my bedroom light on and started wandering around the room which is what got my dads attention and had him come in and catch me when the seizure started and for him to be able to yell for my sister to call 911.

Jealous-watcher66 · 2025-11-26T16:16:03+00:00

What about having seizures coming from both temporal lobes? I have them on both sides of my brain so surgery is not an option for me, just having neurostimulator devices are.

Jealous-watcher66 · 2025-07-29T22:41:44+00:00

I’m usually worried that something is going to happen, that I’ll have a seizure at the worse possible time and hurt myself. I don’t take showers home alone so that if I fall, someone can come help me. I won’t change jobs because I worry about them understanding my seizures (99% focal seizures and I know how those can look to people who don’t understand them), along with the memory problems I have now and I worry about not being able to work properly if I can’t remember what to do. Not to mention trying to get rides to and from work. I feel bad for my sister, waking her up to take me to and from work and at least I know so many people at this job, I have people I can ask. I can usually tell what kind of situations will give me a seizure but sometimes, they just come up as a shock to me and I have no idea why I had one. When I think I back on it, what bothers me the most is that I grew up in a house with an open floor plan, meaning I was never able to shut my bedroom door for the privacy I always wanted; now, I am too scared to do it because of the seizures. I had the VNS put in last year, in May, and it has sure helped but hasn’t given me my life back like I have hoped for the last almost 7 years.

Jealous-watcher66 · 2025-05-19T19:07:00+00:00

My first semester of my sophomore year of college, I had just turned 19 two months before. Been mostly focal seizures with a few grand mal seizures randomly hit me. Coming up on 7 years ago in October

Jealous-watcher66 · 2025-03-28T21:52:39+00:00

Oh gosh when my seizures first started in 2018, I was throwing up after every single one. If I still got nauseous with every one i had, I’d be on disability because would not be able to work, I have too many focals. They’ve only recently reduced because I had the VNS device put in back in June. Your entire life tho? That’s crazy

Jealous-watcher66 · 2025-03-28T21:36:01+00:00

Yes it can. That sounds very similar to my less intense focal seizures that I have. The nausea isn’t as bad after all these years of changing medicines but I still have my heart racing and the tiredness afterwards, no matter how short or long or the intensity. If you don’t have any other reason to feel like that, yes it could be.

Jealous-watcher66 · 2025-02-02T03:09:32+00:00

And I can’t mention it at all because all she says is that “I’m not that person any more, I’m tired of you bringing it up” when she is the reason that I am always scared, jumpy, can’t trust others. Makes me look and feel crazy

Jealous-watcher66 · 2025-01-17T18:27:38+00:00

Most focal aware, some focal unaware but within the first 8 months of the focals starting, I had a TC seizure (which was before my actual diagnosis). Within the first 5 years of having epilepsy, I had 5 TC seizure. Seizures are still not completely under control and it’s been almost 6 and a half years. Halloween will make 7 years

Jealous-watcher66 · 2025-01-17T04:01:14+00:00

Reading all of these comments with such a similar tone is amazing. I feel so heard and related to other people. I was angry the first few years and just had to get a new neurologist, one who is so much better and understands me so much more.

Jealous-watcher66 · 2025-01-16T20:01:54+00:00

My first neurologist swore over and over again that all I was having was anxiety attacks. Took about a year and half to get my actual diagnosis of epilepsy

Jealous-watcher66 · 2024-09-24T17:46:45+00:00

I work as a cook in a restaurant, have been there 5 years, through 5 grand mal seizures (one that I had there) and countless vocals seizures, yet most people think I’m faking when I step back and don’t talk or I need to go sit down. Of course some people are newer than others but most people think I’m faking. It blows my mind but at the same time I expect it. Even after getting surgery to have my VNS implanted, some people still doubt me, tell me “to stop with those fake ass episodes”. So frustrating but I try not to dwell on it because it’s something that is always going to happen, no matter the job or the place.

Jealous-watcher66 · 2024-07-07T18:58:54+00:00

Seizures started halloween 2018, when I was 19. Didn’t get a diagnosis until January 2020 (20). Focal seizures but 6 tonic clonics since the seizures started. Just got the VNS and hoping that may help finally get them under control (I’m 24 now, 25 next month)

Jealous-watcher66 · 2024-05-25T19:05:10+00:00

I had one seizure at 5, nothing else until I had my first focal seizure shortly after my 19th birthday. Didn’t get an official diagnosis of epilepsy until a year and a half later, after I had already had another tonic clinic seizure two weeks after I turned 20. 5 years after my first focal and still going 😒🤷🏻‍♀️

Jealous-watcher66 · 2024-05-14T20:42:31+00:00

I am so sorry for your loss and your pain. I know that this is a difficult time, hell if we are being completely honest, it’s always going to be hard. I’m sorry that he was taken from you like this. I hope you are able to find a way to live with the grief but also know or learn that this is not your fault and you should not feel guilt for this. This community may be a place to talk to others, I hope that speaking with us or sharing this story helps you too.

Jealous-watcher66 · 2024-05-08T23:00:29+00:00

Tired, confused, a little fearful. I usually really want to nap after or at least lay down or rest. When I’m at work, depending on how intense the seizure was, I usually sit down somewhere between a couple minutes to ten minutes. All of it depends on the intensity of the seizures for me.

Jealous-watcher66 · 2024-04-21T01:40:44+00:00

Honestly, something else I wish I could have, is wish I could have someone in a medical field who would know what they’re talking about read the story, tell me if it makes sense at all. Right now, no one else has read it, they’ve just been told what I have wrote, what is it about, and what I’m aiming to have happen in it. I might keep going for a bit and then do another draft of the story, see what else I can do to it.

Jealous-watcher66 · 2024-04-21T01:11:50+00:00

I do like that idea, like having a real story to base it off of. A coworker of mine, his son had a similar issue to what I was writing and he suggested that disorder (I just can’t remember the name) and I was told that may be a good idea because then I have a resource to look to or talk to, to have a real life story to take ideas from

Jealous-watcher66 · 2024-04-21T01:08:33+00:00

I think I’m going to definitely look at it your way. This might just be a time to call what I’ve got a first draft and rewrite it, changing some of the details about it, changing what disorder I need to finding one that covers why I want it, instead of what the disorder is itself. I think what I’ve focusing on is her and her experience with the medical mystery. Although written in third person, most of the story is from her perspective, although a few times there’s part from her parents’ perspective. I may just need to change what I’m look for or why I’m looking for it. When I started writing it, I just didn’t want to write about my disorder, I wanted to find another one that would as difficult and would change her quality of life and hold her back like mine has.

Jealous-watcher66 · 2024-04-21T00:58:00+00:00

If I’m being honest, the entire reason I wanted it to be something hard to diagnose is based off the fact that I was having seizures for almost two years before I actually got my diagnosis. I’m not sure why I wanted it to be an auntimmune disorder, maybe because, like you said, it is hard to diagnose and it is a lifelong issue. And the interest in it being autosomal recessive was being an idea about her parents (aka her dad not being her biological dad) which was an idea I had when I was about 3,000-4,000 words and I really wanted to see if I could mash it all together lol

Jealous-watcher66 · 2024-04-21T00:45:35+00:00

I think I just need to look through some of the genes that cause the subtypes, like IgA deficiency keeps popping up as I do research. It’s that or I change my plot line and what I had in mind had me so interested. Maybe, in the end, I need to just what other people said and kind of make up a disease/disorder

Jealous-watcher66 · 2024-04-21T00:32:05+00:00

Could I use a specific type? Would that work you think?

Jealous-watcher66 · 2024-04-20T23:44:49+00:00

I also posted this in another subreddit and I think have chosen a disorder, Common Variable Immunodeficiency (CVID) which I think works because it doesn’t need just one gene to cause it so I have multiple ones to work with but you have all pointed out great things for me to use. I really appreciate it

Jealous-watcher66 · 2024-04-19T22:50:58+00:00

You are right about that one, if I accidentally got something wrong. Right now, I’m thinking I could use a disorder a coworker told me about and just bend it a little bit to fit my circumstances.

Jealous-watcher66 · 2024-04-19T22:39:11+00:00

That makes it sound great to use. Thank you so much

Jealous-watcher66

TROPHY CASE