30yo undiagnosed seeking help

I’m going to try my absolute best to not make this a whole ass novel to read but the medical industry has really let me down and I just need some support, advice, hope that there’s some way to live a normal life.

I’ll start with some background, starting in highschool I started experiencing weird feelings when I was sleep deprived or hung over that I didn’t understand, I only had three memorable seizures through my 4 years of high school but my parents never seemed to believe what I was saying when i brought them up. One happened while hiking and resulted in me falling off about a 10foot cliff coincidentally while my parents were traveling out the country, they got back and it was kind of just shrugged off because the hospital thought I was just dehydrated and fainted. Then in college it kind of seemingly went away. But in my early/mid 20s it reemerged where the lighting in some stores fluorescent lights specifically was making me feel weird. I always just thought it was nothing and would just push through the feelings of something not being right or just leaving the store and that seemed to work for a while. The effect on my life wasn’t very significant. Until around 26 when I had a very intense seizure hungover at a brunch in a place with shitty fluorescent lights. After the episode I was blind for about an hour and very confused and unable to recall basic facts like my birthday, my ex wife had to answer these questions for me in the ER. The ER docs told me I didn’t have a seizure even though I know 10000% that’s exactly what I had and all those weird feelings I had felt many times before became so clearly linked to some form of epilepsy. I then started seeking medical advice myself and was stuck in this constant circle of doctors basically telling me they didn’t know. I started feeling pre-seizure weirdness, spaceyness, and I think even almost like mini seizures in stimulating environments especially after not sleeping well or poor diet days. Eventually I got in with a neurologist and at my consultation after explaining everything I was told well you don’t have them often so medication probably won’t do anything for you because the side effects aren’t worth it. So that’s just what I believed, after that big seizure I was feeling like I was about to have a seizure or even sometimes felt I was having weird like micro seizures pretty regularly. This led to me trying to change my lifestyle, eating well, trying to get good sleep, avoiding stores and eventually avoiding almost anything outside my house in fear of having another one. I developed terrible anxiety about it which seemed to make the frequency of seizure like feelings even more frequent. Kept telling doctors about this and was led to anxiety meds and therapy. Which didn’t really seem to actually help. By this point I had talked to enough doctors that I honestly just felt like I have to live the rest of my life in this unhealthy state of avoidance of living life to avoid having a seizure.

Now, 5ish years later I’ve learned to manage it on my own better but it’s like it comes in waves. Sometimes I can go months feeling perfectly normal and it feels so fucking good to do what I want with friends and family and go on adventures and camping. But then it always comes back out of nowhere and it hits hard where sometimes daily I feel like I have to avoid life and just rest or not make plans because when I do try to push it a bit and go hang out with friends or family when feeling off it always leads to me fucking up some big plans that I was excited for and then randomly last minute have to be like guys I need to stop whatever we’re doing I’m not feeling good.

I know I’ve spoke about the pre-seizure feelings a lot and how I avoid them here so let me explain what I’m going through when I say this. All that follows happens in like a 1-3min window. For me pre-seizure I start getting a little anxious out of nowhere, usually don’t fully understand what’s causing it, I almost always push through this, then it leads to this disconnected feeling where I don’t quite feel like I’m one with my body (if I’m able to lie down and call it a day, like I’m alone, it usually stops here) but if in a social situation it quickly progresses to where I’m struggling to follow conversations. I start feeling extremely overstimulated and my brain starts skipping almost like I’m blacking out but for less than a second. When I come back the conversation is continuing like normal for others but for me something weird is happening and I’m no longer in the conversation. I slip into this constant like in and out almost like a light switch being flicked on and off really really fucking fast but without losing complete consciousness it’s almost like my brain can’t keep up with the inputs but the inputs don’t stop coming in it my brain is freaking out. At this point my body is also doing weird shit im trying to process too…I’m getting hot, sweaty, I’m feeling weird tingles and sensations. This is the critical point for me where I have to basically stop everything coming in. It’s like an escape now or have a full blown seizure and i pretty much have to rudely interrupt or more commonly actually get up and leave mid convo and just lie down close my eyes and block out any noise from the outside coming in and just hone in on my body. It’s a terrifying experience and so fucking hard to explain because people wonder what’s wrong and asking you okay and are like trying to force feed me inputs but I cannot take it in. Once it calms a bit, I have to actually get the hell out of the situation by trying to do some quick explaining or just say I’m not feeling good and find a silent place to lie down. Maybe like 5-10mins of rest I can start taking input again but very very little at this point I still feel extremely overstimulated and can easily slip back into the blackouts which if I can’t stop will actually lead to a seizure. After an experience like this I am so drained emotionally, physically and mentally that I just need to get home and call it day.

Uhg I don’t even know what I’m asking for here, but I’m so exhausted battling this war and having to cancel on people and avoid living life like I want to. I know that if I push through these pre-seizure feelings I will actually have one and that creates a much bigger ordeal for myself and everyone involved than if I just swallow my pride and be “that” guy who ruins plans because I start feeling off. Is this just what my life has to be? The constant cycle of fighting to not have another seizure? Are there solutions out there that could actually help? Am I just getting shit medical advice? Should I push past those pre-seizure feelings and just start letting myself have seizures so I can get medication? I just want some hope that there is a solution out there…it feels like there should be one but why are my experiences seemingly so hard to diagnose or treat?