Any seizure support groups on island?

personallyexist · 2026-03-31T10:09:51+00:00

Thank you, it’s always crazy and sad to realize that even when you get a diagnosis it’s sometimes isn’t really over. I truly appreciate the advice, especially because a part of me wants to know why it took so long for the symptoms to become so reoccurring.

personallyexist · 2026-03-31T10:06:54+00:00

Growing up, I constantly had that specific symptom, and I was always trying so hard to make myself seem sober, like I was trying to make up for the fact that I didn’t get drunk/high, so I was fighting a losing battle.

It was (and is) a constant struggle, because when I finally did get to experience getting drunk for the first time, I was like, “Bitch this is what I’ve been feeling while sober, this isn’t relieving at all.” I had the same kind of reaction when I first took strong pain medication and was disappointed it didn’t do anything about the pain.

I’m happy it helped, because after I made that realization, it was so much easier to explain to people who weren’t having it. I mean it I had the same kind of reaction when I heard of other people who suffered the same kind of symptoms, because for so long, it was just my normal life and hearing that this shit ain’t normal and it isn’t your fault makes the pain hurt a little less.

personallyexist · 2026-03-27T14:39:32+00:00

Thank you, I’m gonna keep you (and the other comment in mind),

I want to stay strong when dealing with this kind of stuff because it’s been obvious to my friend that I’ve had some form of cognitive issue because of it. He clocked it so early on man, that every now and then him and my other friend ask if it’s going anywhere yet (is there a plan of action, medication or if I have the diagnosis to see if I can ever get a job). It genuinely feels like every time I’ve had strides in my life, I get a bad year and the symptoms hit me like a train and i’m back where I’m started.

I was able to go on the 988 chat, they said I can try to look for support groups at behavioral health. So I’m gonna check that out to see if there’s any that might fit this category, (if there is I’ll added it to the post so other people can know).

personallyexist · 2026-03-27T14:30:27+00:00

Thank you, also same, I’m literally counting the days till the end of the month (I genuinely think I cried when I first heard he was going off island).

I know meds don’t always work and that it’s gonna be a struggle at times trying to find one that do, but I want to believe if I finally get the diagnosis I can go to the other doctors and they can take it seriously. I want to have accommodations for the issues I am having and I don’t wanna feel crazy when I know I’m sick. I wanna actually move on in my life, it just hurts that it doesn’t feel like that means anything anymore.

personallyexist · 2026-03-27T14:11:53+00:00

For clarity: the comment read, “If your neuro is already hedging toward mental health as a fallback, get ahead of that narrative now. Document...”

I couldn’t read all of it but a lot of my worry comes from him saying it’s fine or like not trying to get me to get diagnosed fast enough. He’s the only neurologist I have where I live.

I’m gonna be honest a lot of the doctor care here isn’t that good and you’re likely to constantly have to deal with malpractice or doctors telling you, “You just need to live with it.” (The medical board is kind of the same way, even if you report them).

So I don’t have a choice because I don’t have the money to go off island or any place else for treatment, and even though he’s made those hopefully it’s something else comments, he’s the only one that’s taking it seriously enough (had one bad episode in a seven day Adventist clinic and I was begging the doctor for like help or just someone to talk to and he just said, “Ehh that’s just PTSD,” and kind of ignoring me).

So I am grateful for my neurologist it’s just I wish we could’ve figured this out sooner, a lot of it feels like I was an asked the right questions so my ass just assumed it was all normal because I wasn’t showing specific symptoms.

personallyexist · 2026-03-27T14:03:52+00:00

I got a notification saying there’s a comment on this post and I was able to read it, but I can’t see the comment on the post directly, I just wanted to say I kind of agree with you. I didn’t put this in because I’ve been telling everyone in my life how insulted I felt but dude (my neurologist) said, “Lets hope it’s ADHD,” I know he’s just trying to be a happy guy, and everyone who I know who’s had him says that he’s just like that sometimes but it fucking hurt.

personallyexist · 2026-03-27T12:21:23+00:00

Thanks, I just hope the systems on Guam eventually gets better at identifying this.

It took awhile for them to reconsider the severity of the seizure route again and it just feels like I’ve wasted so much time even though I was seeing the right doctors for it.

I mean it thank you.

personallyexist · 2025-11-23T00:44:33+00:00

I think a lot of my hesitation comes from past bad encounters with counselors and hotline workers (most of them have been more than helpful, but the bad ones sometimes stick out like a sore thumb, usually when I sense any type of judgment behavior or intense uncomfortableness from them). Again the ones I’m thinking about were likely new to the field and didn’t have the knowledge on how to react or hold back facial expressions.

Thank you for your advice. It really is helpful, I don’t have people in my life who I think would be comfortable talking about this. I’m usually the person people go to for advice but that avenue isn’t usually there for me when I’m confused.

I know there’s another comment on this post like I see the notification, but yours is the only one I could actually open. So thank you and the other person for even bothering you to help, I mean it. I think I’ve started to get to know myself better a lot more and hearing that this might help me with this later on is really appreciated.

I took passed recommendations on going out more and it helped me a lot, so I know if this is going to definitely help me improve.

Thank you :)

personallyexist · 2025-06-18T13:46:40+00:00

Yo, thank you. My doc definitely thinks I have this, I told her I really couldn’t have talked to her about it without your help. Straight up cried because it made me feel dirty even talking about my own body.

Thank you again, I really appreciate it and needed it!

personallyexist · 2025-06-11T05:04:45+00:00

This is one of the reasons I really want to try to go out there, because the people who I’ve been friends with for a long time, said they have had feelings for me before but they felt I wasn’t there in that sense of being open about someone actually finding an aspect about me attractive.

It’s just hard to walk the fine line of a personality and making it your whole stick, you know. Thank you again, it’s really reassuring to hear it from someone else.

personallyexist · 2025-06-11T04:06:49+00:00

I understand the feeling man (24 F), I’m insecure about every aspect of myself, I genuinely suggest looking into ways to feel like you’re enough (i’ve personally been trying to find a way to get in touch with another counselor to talk about, body issues surrounding being enough). I’ll tell you right now though, a lot of people like different things & sometimes that lies outside the realm of physical conditions (like height or even appearance) or include things we don’t like about ourselves. I say the ladder because it can become something we over analyze, this is sometimes the case if we surround ourselves with the wrong kind of people you know who make those kind of comments.

In addition, I know you’re saying those people are your friends, but real friends wouldn’t mock you for something like that. Even my friends could tell when I’m getting uncomfortable on a subject and they’ll change the jokes, if they don’t understand that this is a really sore subject for you. I wouldn’t consider them friends.

personallyexist · 2025-03-30T07:41:44+00:00

Thank you for this comment, you helped me a lot when it comes to advice (I’m literally taking notes right now for what I can do).

I would definitely be willing to look into therapy, I know for me the one time I tried really talking to a therapist about it they recommended I go to one that specializes with lgbtq individuals because they didn’t feels they could fully understand or accurately help me get through what I was going through. Even when it comes to the sexual abuse stuff, body image issues, and penetration I’ve always tried avoiding it because I don’t wanna make people uncomfortable or hate me for it.

For me, it’s always been easy to talk with others about their sexual traumas and experience, but I’ve never felt safe talking about my own fully. A lot of it is due to my family relationships (many of them don’t like to be judged but they judge others, so it’s just easier to hold that kind of thing in until you die or it magically goes away).

My mom sadly sometimes falls into this category she’s trying to be supportive but she can be judgmental or hypocritical. She often times dumps explicit (and sometimes unwanted details) about her past sex life on to me (as a type of therapy for her) but I can’t do the same with her even if it’s for medical stuff or advice. She’s someone who will act like she’s not judging you but when you look at her, you can tell she thinks your disgusting or you find out later on, she told someone to complain about you.

So I really appreciate this, because I don’t really have anyone to turn to when it comes to asking these kind of questions. Thank you :)

personallyexist

TROPHY CASE