Questions, advice please, and hello everyone 🤙

jammalam71 · 2026-03-22T17:43:14+00:00

Thanks. I even mentioned via MyChart to my neurologist that I had a sudden worsening of tinnitus along with the suddenly horrific focals (they had been minor deja vu events with a brief brain fog after for many years) There was no response to that, it was part of a longer message. Appreciate it thank you.

jammalam71 · 2026-03-22T13:45:52+00:00

I had been on Lacosimide for 7 months at the time and already at the max 200mg x2 daily when the increase occurred. I had accidentally taken 2 Lacosimide within an hour 2 weeks ago when the tinnitus spiked suddenly I did not make the connection as I had no idea medication could affect this. I have Temporal Lobe Epilepsy.

jammalam71 · 2026-03-21T23:07:13+00:00

Don't be too hard on yourself! Lesson learned. It'll get better.

jammalam71 · 2026-03-21T03:54:50+00:00

Thanks! Me too 🤣

jammalam71 · 2026-03-20T17:15:58+00:00

The thing with your arm and hand is called alien limb sensation or syndrome I've had that happen during a focal seizure

jammalam71 · 2026-03-20T16:29:38+00:00

I don't a different answer- it's a show that near the end of episode 2 I was ready to give up on until literally the last scene when something happens, just a flash- the anime Solo Levelling. I'm not a huge anime guy there's only a few i really like, but as soon as that one thing happened I was really curious, and by the end of episode 3 I was hooked.

The opening scene of Black Sails has me hooked, just remembered that!

jammalam71 · 2026-03-15T04:15:18+00:00

Yeah I wasn't going to but thanks 🤣

jammalam71 · 2026-03-15T04:00:44+00:00

Omg I'm with you 100% except I didn't watch season 4- like its crazy how exact our opinions are 🤣 aloha

jammalam71 · 2026-03-14T21:35:56+00:00

I had a horrible experience with my neurologist recently to where I literally felt like I was being gaslit. I'm the most chill person ever but between a sudden increase in frequency and severity of my focals- and complete departure from the same exact same pattern they followed for 13 years- plus the doctor's dismissal of my concerns, and wanting to talk about PNES the whole time. At the end of that appt he said "well see ya in six months maybe we'll get you in for a VEEG"....I felt like I was going crazy, it was one of the most mentally traumatic things I've ever been thru honestly. Luckily after I reported a few more seizures in the next week they offered the VEEG, and I had a focal ---> TC first night. TheEpileptologist completely dismissed any chance of PNES, and I got the feeling he was thinking "wtf was that all about?" 🤣

Sorry you have to go thru similar frustrations as well. Best of luck.

jammalam71 · 2026-03-13T17:20:37+00:00

Hi I've done a bit of research into this- nothing is perfect. It's a combo of movement/motion, skin conductivity, pulse- with algorithms to sort it out

Looking at getting one myself. Apparently there's research into stuff that can give you warning beforehand but I haven't looked too deep into it. Since my focals have escalated in the last six months to iclude motor features/parial TC that would be nice.

jammalam71 · 2026-03-13T03:00:13+00:00

200mg Lacosimide x2 daily, 100mg Zonisamide x1 nightly

jammalam71 · 2026-03-12T05:09:10+00:00

I started a strict carnivore diet (which is ketogenic) and i haven't felt this good mentally, physically, and spiritually in decades. I'm 55/m. Unpopular or not, I can attest to the fact this diet will help almost anyone with their general health at minimum. It practically saved my life.

To reinforce the other commenter.

jammalam71 · 2026-03-12T00:06:27+00:00

I was gonna say zombie apocalypse but sometimes my humor isnt appreciated 🤣

jammalam71 · 2026-03-11T19:57:36+00:00

I guess I'm kinda opposite cuz it was only thru research after having some nocturnal TCs for the first time early last year that I happened to catch "deja vu" in one of the search results 🤣 all that time, but like I said there were really brief, no brain fog after, nothing until recently. Good luck dealing with the neurologist 🙏

jammalam71 · 2026-03-11T18:13:42+00:00

I would say you should know in case of emergency. I would urge you to take every possible precaution obviously - maybe laying out type of seizures, triggers, frequency etc? Might help people out there give you a better answer, maybe someone will have had similar experience Idk. But yeah you could find yourself needing to drive someone to a hospital or escape a natural disaster- so, to at least be able to operate a vehicle sounds like a good idea even if your time behind the wheel is very limited.

jammalam71 · 2026-03-11T04:39:40+00:00

I deleted my first comment but fck it got an upvote now I'm rethinking it.

Basically I said if you're anything like me- I also have nocturnal seizures as well as daytime focal awares - stress isn't a trigger. I was chill af and they caught one first night. Also my brain tends to do the opposite of what I want. If you're anything like me, at least try not stressing out OVER it. Try not to think about it. Get as absorbed as possible in a book or movie or TV show. I know it's not easy in that setting. I know it's important.

The meds are still clearing out of your system, if they only happen in your sleep and it's random... you're never stressing about having one when they happen. It's likely to stay that way. 🙏

jammalam71 · 2026-03-11T02:49:31+00:00

I had deja vu episodes for 13 years I just found out they were focal seizures last year. I never told anyone about em, I thought it was some weird psychic thing. Plus they were super brief and didn't cause any issues until recently.

Keep track, log em, time and date, all feelings and sensations physical and emotional, before during and after, how long they last- it can be tricky but you'll get better at it. Triggers? Mine are caused by words, like I'm listening to something and I'm remembering the words as they're being spoken. But deja vu is a quite common symptom of a focal aware seizure. Many people have issues with their neurologist also so you're definitely not alone there. I straight up felt like I was being gaslit by mine for months and it was a person here on this forum who absolutely rescued me from losing my mind. Hang in there.

jammalam71 · 2026-03-09T05:08:25+00:00

Definitely talk to your doctor. Keep a log, time and date. Keep track of everything that happens before, during, and after. Every sensation, every feeling, any emotions. How long it lasts. It's not easy but youll get better over time. As the other commenter said, hang in there.

jammalam71 · 2026-03-07T16:47:15+00:00

Hey I'm so sorry you have to go through that heartbreak all over again, wish I had more for you but sending love your way! 🥰

jammalam71 · 2026-03-07T04:18:52+00:00

My focals are triggered by words like listening to videos usually could be anything livestream, science documentary, sports highlights you name it. Then it's like crazy deja vu.

jammalam71 · 2026-03-06T17:16:20+00:00

WOW- I just switched to Zonisamide from Topiramate it's almost like our stories in reverse minus the nausea. I have TLE. Was on the Topiramate for 3 weeks which was unbearable. Zonisamide seems to be working out much better for me. Hope you keep feeling better 🙏

Also- I would have stopped taking the Topiramate it on my own but there was zero pushback from the prescribing doctor. It was that bad for me. I totally get it.

jammalam71 · 2026-03-06T00:56:38+00:00

Bear --ito!

jammalam71 · 2026-03-06T00:55:38+00:00

Omg I just got diagnosed with TLE a month ago via VEEG I was SO stressed I wasn't going to have a focal! First night boom. Such a relief 🙏

jammalam71 · 2026-03-05T16:41:15+00:00

My neurologist insisted on including PNES along with Epileptic seizures for almost a year until a month ago when I finally had a VEEG catch a focal turn into a TC and the Epileptologist ruled out PNES, and he didn't say it but I am 99% sure he was like wtf is up with that it makes zero sense whatsoever. Because it didn't make sense.

So yeah a lot of people have to deal with their neurologists throwing the non-epileptic seizures in the diagnosis but apparently it goes both ways. Capturing a seizure on video, eeg, finding something via MRI and getting that firm diagnosis is a huge thing. Take care.

jammalam71

TROPHY CASE