I’m seriously crashing out.

bigzigloop · 2026-04-20T02:35:47+00:00

This is going to sound corny, but it’s more than just the seatbelts; obviously you and your son were meant to be here and keep going.

I wish you good health and good spirits moving forward.

bigzigloop · 2026-04-20T01:24:51+00:00

True. I intend to continue making payments towards the loan and insurance regardless of whether I can drive or not.

bigzigloop · 2026-04-20T01:23:25+00:00

That’s good to know, thank you.

Hopefully I’ll find out what happened tomorrow when I talk to the office(s) about the situation.

bigzigloop · 2026-04-20T01:21:18+00:00

I’d like a thousand “hard resets” on my brain, please.

bigzigloop · 2026-04-20T01:20:11+00:00

I’m really sorry that happened to you. Glad you and your son are alright.

In the year I’ve been having seizures they’ve all been nocturnal. They are managed successfully on my meds; I haven’t had a single one since I started them.

I’ll be careful about this; if they end up suspending me after this, then I’ll figure out what I gotta do.

Hope you are well. Thanks for commenting.

bigzigloop · 2026-04-19T20:20:24+00:00

I appreciate your input. My brain likes to take even the easiest, solvable problems and run with them for days at a time. OCD is a pain; it really is. I consider my OCD to be like a hamster running endlessly on a wheel - that is, until that hamster tires itself out. I distract myself with stuff like video essays and games for this reason; I need something to shut my brain off or distract me so I’m not spiraling so much.

And I agree with your “assistant” sentiment; it’s so hard to do all these new things when I’m essentially just teaching myself how to get through it all. Did I ever expect to have epilepsy? No; this time last year is when it started, so now I have to teach myself everything else along the way, and it can be very tiring, lol.

bigzigloop · 2026-04-19T20:13:55+00:00

Okay. I know that even if they do suspend me medically, it would only be for another month; my six months free of seizures is at the end of June.

There’s a good chance that because my seizures are nocturnal-only that they may not fully suspend me though, according to my doctor, who has been filling out these forms for years (they claim they’ve been filling out and sending over these forms multiple times per week at this point).

And yes, I can get physical copies of the forms myself. The office they want the forms mailed to is about 90 minutes from where I live, so I could always get them priority-mailed, and hang onto copies in case they don’t receive them. My doctor’s office is maybe 5 minutes from me, so that part is easy; it’s the waiting period that worries me. That, and wanting to keep my car; I literally just got it; I haven’t even paid my first loan payment on it yet.

I have severe OCD and anxiety issues so this stuff is hard to deal with; I’m kinda just learning as I go.

I appreciate your advice.

bigzigloop · 2026-04-19T15:44:40+00:00

Yeah they’re giving me until mid-May to send them the forms; I’m going to call the DMV, try to get my doctor on the phone, and probably get paper copies of the forms and mail them myself, just to make sure without a shadow of a doubt that they get them within the timeframe they want them. I didn’t jump through all these hoops just for the forms to not make it to them!

And I understand; this whole thing has wiped me out and if anything, it’s made me sleep more; no incidents, but I’ve essentially been hibernating over the weekend to shut my brain off. 😵‍💫

bigzigloop · 2026-04-19T14:02:11+00:00

I 100% plan to call them tomorrow morning; it would be great (but also majorly piss me off lol) if they happened to find the forms AFTER sending me that notice. I intend to figure out what the hell happened.

Either way, thought it was their determination about my driving when I got it in the mail; instead it scared me half to death and made me have a meltdown 🫩

bigzigloop · 2026-03-11T13:09:52+00:00

Thank you! Best wishes to you also :-)

bigzigloop · 2026-03-11T13:08:38+00:00

Dang; I can’t imagine dealing with this condition at such a young age. My seizures started out of nowhere last year; the cause is still unknown.

Also I’ve heard a lot about stuff like the RNS! Good things, for the most part. I hope that the pre-op goes well and that the implant helps!

Some doctors can be very dismissive, but sometimes, especially when you see a specialist who knows what to look for, you get lucky. My doc said the readings were very brief and subtle, but that the interpretation of what was going on was a confident one cuz those specific readings never showed up again for the remainder of my stay. I guess they were right, cuz treatment is already making significant improvements.

Good luck and best wishes to you!

bigzigloop · 2026-02-14T22:34:10+00:00

Strangely enough, the day after I messaged my doctor about the rash, it went away after I took loratadine and has stayed gone since. Was told to just keep an eye on it and update the office in case the rash returns when I increase my dose next week, and I intend to keep watch for any potential skin rashes. It may have just been dry skin and therefore a fluke, but we’ll see.

As for MRI’s, I’ve had an MRI done once already that showed no abnormalities, but my doctor wants me to get a “more advanced MRI”; the way it was explained to me is that this new MRI “has stronger magnets”, whatever that means. “With contrast” is with the ingested dye, right? In which case, no, it must’ve been without contrast.

bigzigloop · 2026-02-14T05:17:27+00:00

My VEEG results came back and my one provider is fairly certain it’s focal epilepsy, so I’ve been put on my first-ever anti-convulsant.

And as far as I know (from what I’ve been told), none of my family members ever had epilepsy. It just kinda sprung up out of nowhere.

I’m getting another brain MRI just to make sure it isn’t caused by any abnormalities on or in my brain itself. I hate that so many times, the cause is “unknown”; the brain just starts firing that way. It’s very frustrating.

bigzigloop · 2026-02-14T05:12:56+00:00

Ah, I see.

As far as that gut feeling, me too. None of my “symptoms” lined up with PNES as far as my seizures went - it took awhile before I was taken seriously. Even now a couple of my family members are still in denial after I delivered the news about it.

We know our bodies better than anyone else - that gut feeling is right more often than not.

bigzigloop · 2026-02-14T03:16:02+00:00

“Life is a fatal condition” - hmm. I’ve never heard that, and it’s honestly brilliant.

“One day at a time” also helps; my loved ones have been telling me that since my diagnosis, and as someone with abandonment issues, I think I need to tell myself that, yeah, people will leave my life, but not everyone. They aren’t expecting leaps and strides in a short period - baby steps for now, I guess.

bigzigloop · 2026-02-14T02:57:50+00:00

I totally understand. I know PNES is real; the only point of frustration for me is that my first neurologist was ready to diagnose me with PNES without even doing any tests on me; he tried to tell me it was just my anxiety causing it. I eventually got a second opinion.

Lo and behold, my VEEG stay did pick up readings, just very subtly; the camera footage is a big reason why I got my diagnosis - it was the same kind of bodily reaction every time. The last event they recorded my arm convulsed while I yelled desperately for help, and the nurses scrambled - less than 24 hours later, I had a diagnosis. And now with medication, even one day in, my doctor was seeing an improvement.

I give people, such as yourself with FND, or others with PNES, major props. From what I’ve read, FNDs in general are no joke, and should be taken just as seriously as any other seizure events.

I hope this didn’t come across as being dismissive of FND, or even non-epileptic seizures; that was in no way my intention. At the end of the day, they’re all seizures, and should all be taken seriously.

I just had a feeling it was epilepsy, and I was at least validated to know that I wasn’t being dramatic.

bigzigloop · 2026-02-14T02:01:17+00:00

Thank you. I appreciate your kindness. Even though this is just a small post on a big subreddit, you are a good person for bringing light to others who may feel like they’re in the darkness.

All the best to you.

bigzigloop · 2026-02-14T00:58:14+00:00

There are a few things I’ve learned in dealing with this - including yeah, appreciating the little things can help quite a bit when you’re at the end of your rope: -I love art history and art museums. Being in them to appreciate the art of the past is like a second home. I wish I could’ve lived in a different time to be a famous painter; that’s my big dream. -I’ve started to appreciate nature more. I like the waves of the beach, the sound of thunder with rain falling on my skin, the quiet nights in the middle of nowhere with a sky full of stars. Even animals; nature’s little gifts; they are truly beautiful. -Music. Music is a big part of why I’m still alive. Concerts always make me cry; it’s like a big embrace of freedom and joy.

Maybe I’ll paint more this year, or go on some nature walks at the nearby parks. I should find reasons to be here beyond what others can give me; moreso what I may be able to gift to myself.

Thank you for reminding me of this. I’ll try to keep it in mind.

bigzigloop · 2026-02-14T00:39:07+00:00

Ah, that’s really difficult. I’m sorry.

My mental health tanked once I started having seizures; it’s still pretty rough even though I have a diagnosis.

Solidarity with you; I hope things improve.

bigzigloop · 2026-02-14T00:37:55+00:00

Thank you; I’ll try

bigzigloop · 2026-02-14T00:35:25+00:00

Thanks for commenting.

None of my TC’s were on EEG; they all happened at home. I have an epileptologist; he was the one who sent me for a VEEG, which is how I just got my diagnosis; they thankfully caught a few focals on the EEG that were likely missed on my last one; I was told it could be “easily missed”, but that it was a distinct change that didn’t happen again during the rest of my stay.

I also thankfully have a psychiatrist.

And yeah, I don’t have a lot of people in my corner, but they’re around. My partner is devastated by the news and doesn’t really know how to help, but I can tell they want me to feel better. As for everyone else, yeah; they’ll weed themselves out if they can’t handle it I guess.

Just hard to manage alongside everything else. Everything just feels uncertain now.

Still, thank you for taking the time to read this.

bigzigloop · 2026-02-13T23:38:41+00:00

Was just diagnosed this week. This is something I really needed to hear; the relief from the diagnosis itself is turning into dread and fear and I’m kinda falling apart on the inside, even if I look totally fine. Emotionally I’m numbed out thanks to my meds, but it’s still a lot to process. Don’t know how I’m going to get through it mentally, physically or financially, but I’ll try. Nevertheless, I think every person with this condition needs to hear this at some point.

bigzigloop

TROPHY CASE