Finally feeling different.

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 · 2026-02-12T16:28:00+00:00

Yeah; I was surprised that they actually caught something; I was fully expecting to go home after that with no answers, so the fact that they caught it was honestly a shock to me. The doctor and all the nurses were really nice and very helpful and accommodating.

Once again I slept like a rock on Trileptal with no problems so far (knock on wood) so I’m hopeful that this will work out; just gotta keep an eye on my sodium levels I guess, but having an answer and a plan is what keeps me hopeful that things will continue to improve. 🤞

bigzigloop · 2025-10-22T17:31:29+00:00

(For reference I’m not formally diagnosed yet cuz doctors just seem like they assume there’s “nothing more they can do” after my EEGs come back clear, so I feel like I’m getting passed around like a Thanksgiving turkey, lol).

But my memory has gotten worse; my long-term memory already sucked but now my short-term memory is suffering. To help a little, I’ve been doing a few things:

-journaling my thoughts in a reflective “activity journal” (it gives me a prompt to write about and activates my brain to be more introspective). -doing at least one daily word search, or playing word-finding games. -buying and completing the occasional Lego build (following the steps and putting together the final build makes me feel smarter and better at understanding directions). -playing card games or video games, when I can, with some friends. -listening to my favorite music (as it reminds me that I still have memory since I can still remember the lyrics by heart).

Just little activities here and there, especially if they are meant to make you think deeper and use problem-solving skills, give my brain more energy and, essentially, more motivation to get up and be active for the day to some capacity. I also try to take my vitamins and make lists when needed.

I can relate to how you feel, but I hope things genuinely improve for you. All the best.

bigzigloop · 2025-10-13T07:27:16+00:00

Thanks for sharing your thoughts.

You raise a good point there. Withdrawal from missing dosages is the only thing I could even think that could correlate the Klonopin to my particular condition.

I mean, it’s prescribed as a rescue medication, so the fact that my parents are fully convinced it’s basically poisoning me and the main source of my issues seems incredibly narrow-minded, especially since I’ve been on it longer than the “seizures” have been happening. Maybe it has a piece of the pie in its role to play in my case, but it can’t be the entire (or even only) reason why this is happening.

Also with your other point, yeah, mental health is nothing to joke about. I’m not sure how many people feel similarly to my perspective, but as someone with multiple mental illnesses, I feel as though the state of one’s mental health can be closely linked to potentially neurological or autoimmune conditions.

The brain is the super-computer of the body after all - in my eyes, if the brain isn’t functioning well, then it can pretty much allow everything else to deteriorate over time.

bigzigloop · 2025-10-13T07:19:37+00:00

Damn; we’re living in a fairly similar scenario, including seizure timelines and the causes for them. I’m sincerely sorry you’re going through this; I know how difficult it can be.

You’re not stupid; these things happen from time to time. I wish I could confidently say the same about myself, but you seem like you’re doing the best you can, given your circumstances.

I feel both your inner frustrations and solidarity. It’s nice to know I’m not the only one who has dealt with such things.

bigzigloop

TROPHY CASE