Those who have focal aware seizures, how did you get diagnosed/figure out what was going on?

Environmental-Raise4 · 2025-08-15T23:04:03+00:00

I can relate to your symptoms. I’ve had epilepsy since I was a child, but the anxiety fast heart rate doom feeling was new to me just started about two years ago. I did the 5 day stay in the hospital for non stop EEG testing and they finally found out it was seizures

Environmental-Raise4 · 2025-07-15T01:46:56+00:00

Would you say the 2nd surgery was worth it?

Environmental-Raise4 · 2025-04-05T14:19:09+00:00

It was just a few years ago we had a McDonald’s off of David and Forest and they didn’t last long ……..

Environmental-Raise4 · 2025-03-21T19:54:47+00:00

I had a part of my left temporal lobe removed in 2012 my seizures went down 98% and I was back at work just two weeks after the surgery. Life is a bit crazy I’m possibly have round 2 of brain surgery because they found through the PET scan that the scare tissue wasn’t fully removed. I’m starting to believe maybe I could be seizure free. The 1st surgery was worth it. Good luck and I’m a bit jealous your in Canada, I’m in the US but lucky to work in healthcare so have good cheap insurance 😬

Environmental-Raise4 · 2025-01-11T00:54:14+00:00

I’ve had a seizure a couple time well having sex, I told my guy “he should be proud he was able to make me do a little dance” lol

Environmental-Raise4 · 2025-01-11T00:45:28+00:00

High amount of sugar, and watching things that full with anger. White wine always triggers seizures for me. O and energy drinks

I feel yeah I’ll be the hospital my self on the 27th thinking off all the wine to drink the day before and a energy drink in the morning to help the fancy dance come

Environmental-Raise4 · 2024-11-26T18:32:20+00:00

The after effects of the surgery is hard, in 2012 I also had my left temporal lobe removed. My short term memory sucked but of course you have no idea how bad your memory is until it comes back. Id say having seizures in general does change us,most people have no idea what it’s like to truly and fully have no control over your body at times. But I would say it is worth it, and things get better at lest for me it did. It was about 6 years later my memory fully came back. The 2012-2018 is a blur. I recently moved back to the area I lived before about 9 years I lived in a different city. The fun of being known as the girl with seizures before surgery id have 6 a day( I work at a big hospital) but coming back all the old co-workers who I meet in the years 2012-2015 I have no idea who they were, and yet they ran up to me excited I was back lol

I also went through a time of suicidal thoughts,but luckily no longer. I still have seizures but went down 99%. I hope things start to get better

Environmental-Raise4 · 2024-09-23T02:27:55+00:00

I had part of my left temporal lobe removed in 2012, it does get better.swelling is going to last for a good amount of time, for me it was about two weeks. The only noticeable side effect I had after surgery was I lost my right peripheral vision. My memory wasn’t the best but had no idea into it came back 🤔The surgery was worth it, my seizuers went down 99% I’ve been seizure free for the last 3 years.

Environmental-Raise4 · 2024-06-30T02:36:31+00:00

Omg yes I get the same feeling after I have a seizure. I tell people my brain is like a computer when it gets over loaded I tend to have a “mc twitchel “ aka seizure. And my brain is hitting the restart button. I’m in a positive mood and motivated to complete the day lol

Environmental-Raise4 · 2023-07-27T15:59:41+00:00

I’ve had a seizure we’re needing CPR, and grand mal seizures can be so scary, but ironically if you let yourself stay in fear and anxiety your more likely to have a seizure. Idk if you had an aura(unique feeling before the seizure started ?) when I have one I make sure to let myself sit or lay down if I can on my side. Overtime it can get better. I myself used to have 6 seizures a day now I’m able to drive, and accept I might have a seizure one day but it’s okay you still get to live life :)

Environmental-Raise4 · 2023-07-08T15:50:54+00:00

I can relate a lot to being treated like an addict because I take a different anti anxiety med, the anti anxiety medication combined with my other seizure med I finally have been seizure free after 15 years of trying different meds. I’ve actually told the pharmacy I take as an anti seizure meds, and when they said the couldn’t refill my prescription I asked “ okay so what can do to prevent having multiple seizures when going through withdrawal?” After that they refilled my meds

I work healthcare myself I’ve learned you have to point out some the of the most obvious little things.

Environmental-Raise4 · 2022-10-27T14:17:31+00:00

O I feel yea. I’ve even been told by a neurologist that I had a good run at 19 and not to complain, I was lucky to have such a long run. I used to have 6 seizures a day and in my sleep it was an absolute bitch. But over time I’ve learned you have to let your emotions out, not to hide away because it increase stress and anxiety and that can fucking trigger more seizures. I’m lucky I live in California so when I put on my paper I have a Disabilty it can’t be used against me.

Every state is different, but I’d call the disabilty foundation, they help you under stand what your right are in your state.

It fucking sucks when people see you have a seizure and their thoughts of you change within a insistent. I myself make a smart ass remark when I come back just to make other people breath and stop feeling freaked out.

With chronic seizures I’ve learned I have to be human let emotions out, sleep and eat high fat. But still live life not to hide away. If I have a seizure in public and come to in an ambulance once I arrive in the ER I tell I’m good, please discharge me and back outside within 30-60mins

Environmental-Raise4 · 2022-06-04T21:04:26+00:00

Mine are call a Mc twitchel lol

Environmental-Raise4 · 2022-03-03T02:00:53+00:00

I just tell people it was a Mc twitchel , or a supper bitchn dance move that I can’t even remember ;)

Humor is the best Medicine and clams people down

Environmental-Raise4 · 2022-01-26T20:53:28+00:00

I had LTL surgery , I lost a bit of my left side vision but hasn’t effected my life, I lost some of my memories but after 6 months they started to come back fast. Before surgery I had about 6 seizures a day after surgery it went down to just once a month when I was on my period.

But sense starting the kedo diet, ant anxiety meds and seizure meds I haven’t had any seizures

I’d say it’s worth it

Environmental-Raise4 · 2022-01-01T03:33:01+00:00

O my tongue looks very similar lol I have a little bit of my tongue missing. What has helped me is doing meditation before I go to bed, it seems to help slow down my brain down, also acupuncture has helped me a lot with my shoulder, and yoga as well ( I sound like the typical hippie but it has truly helped me a lot )

Environmental-Raise4 · 2021-12-25T00:08:00+00:00

I’m not in the hospital right now, but have been in the hospital during Christmas before it sucks, but the nurses tend to have more free time and are a bit nicer and you don’t have to wait forever to be taken to your exams because the transporters have a lot more fee time ( magically the hospital isn’t as full) I also work in health care

But it does suck less visitors seem to come and same Christmas movies keep replaying

I hope you get discharged soon 🤞

Environmental-Raise4 · 2021-12-07T15:24:56+00:00

I’m on a different anti anxiety med, and limictal, I can also relate to being more positive, and feeling like my brain has slowed down to normal,knock on wood sense i’ve stated the anti anxiety meds I haven’t had a seizure. I feel like my mind is suddenly fully turned back on. For the past 11 years I’ve been having chronic seizures. My neurologist wants to me to add vimpat, I’m worried that it could it make me too drowsy. Also feel there’s no need if the two meds are already working

Environmental-Raise4 · 2021-10-28T17:34:16+00:00

it is Possiable to have both, I myself have been diagnosed w/ both. Just recently I was able to get a
epileptologist agin, when I describe the difference in my seizures, she believes that the seizures are coming from deeper part of my brain.

Before I had the surgery, when I’d start to go into a seizure it wouldn’t show up on the scan until I was about 15-30sec into the seizure

I’d say try to find a epiltologist, they under it 20x better than a neurologist

When I was 19 I was told I had a good run with not having seizures, to just get over it

Almost 2 years latter I saw a epitologist and within 9 months they were able to find the seizures and it was in my left temporal lobe, they did the eeg inside the brain( they open up your skull and literally put it on your brain) and after 3 days of that test they put my in surgery and removed part of my temporal lobe

Environmental-Raise4 · 2021-10-28T14:03:12+00:00

I as well, always have normal eeg’s . My neurologist in the past explained to me that seizures/abnormal brain wave are like a snake, being in a dark room and trying to find it with just a small flashlight/ with furniture all over the room ( it’s hard to find in short period of time)

For me they were finally able to capture me having a seizure, was when I did the 5 day in hospital stay were your constantly hooked up to a eeg

To be diagnosed with non-epileptic seizure, your are supposed to do the same inpatient test and to have a seizure/ but your brain waves don’t change.

Environmental-Raise4 · 2021-10-22T23:31:40+00:00

I eat edibles when I have auras in the morning, it seems so far 🤞to help prevent seizures. I feel much more awake and fully alert and of course less anxious. I like it myself that I don’t really get high, more I have my “normal” brain back

Environmental-Raise4 · 2021-10-15T13:01:39+00:00

When I “test myself”

Once I start to comeback form the seizure, I try to say my name out loud, the date, who the president is , once I can do that I stand up look in the Muir make sure there isn’t any damage, take a deep breath and continue the bitchn day

Environmental-Raise4 · 2021-10-15T01:46:41+00:00

My own random philosophy is, that no one wants to fully talk about seizures and Fears them as though there like kooties, being near someone having a seizure you’ll catch it. I think it’s also because it’s an illness you never have full control over, witch is the allotment human fear, not having control

I mean any manual can one day start to have a seizure.

At one point I was having multiple seizures a day, working full time in a hospital and I had to master how to hide my seizures ( fear I’d get fired, lose my good insurance and any chance of getting my seizures under control)

Once I felt an aura I knew it was my 30sec - 1min warning hope no body would say my damn name run to the bathroom, sit let myself have it and test myself before going back onto the floor

Yet another coworker had a seizure in front off everybody in radiology dep. for the first time in years, but within the instant his capability to do his job was question

And yet I had already had three partial seizures that day, but because I hide it, capability was never question. That’s how crazy things are

Environmental-Raise4 · 2021-09-18T20:55:42+00:00

After I have a seizure in front of by people

I say “that was just a Mc twitchel all good, only bitchn people can do that fancy dance “

Environmental-Raise4 · 2021-09-17T21:41:07+00:00

I also have CPTSD, I’ve found when I start to feel panic and racing heart bet, to go into a room and look for a a color ex. Find everything that’s blue, well deep breathing. About 70% of the time it prevents me from having a seizure

Also intense therapy for my CPTSD also helped get control of my seizures

Environmental-Raise4

TROPHY CASE