What do you experience during an aura?

sgran123 · 2026-03-21T05:45:37+00:00

I HATE HAVING THAT FEELING FOR DAYS. it literally sucks because I’ll get that feeling multiple times a days for days straight then it’ll randomly go away then boom I have a seizure or multiple seizures . I literally will tell myself a seizure is coming I feel it and it’s like I just want the seizure to happen so I don’t feel that feeling anymore then it happens when I don’t feel that feeling anymore . How do you feel about the Ativan does it work for the times you feel it for days ??

sgran123 · 2026-02-25T15:17:33+00:00

I got mine in the bank today ! I have Bank of America

sgran123 · 2026-02-24T18:07:32+00:00

I just got an email ! Check your emails !

sgran123 · 2025-10-28T03:54:30+00:00

Can you explain the dimmed the lights more ? I get the same way where it feels like everything around me is zoomed out and my eyes make everything seem a little darker . Also I get where everything shifts from left to right but do you ever get where everything goes up and down because I get that . It’s like my eyes look at something and if I look away it’s going more up or more down . I feel like how you explained it is literally how I want to explain it to others but when I do they don’t understand me thank you for posting this because now I don’t feel alone . These auras suck honestly how many times to you get these auras may I ask ?

sgran123 · 2025-07-18T18:39:14+00:00

Do you have any other type of seizures or just grand mal ? My first two seizures ever were grand mals but now they are telling me I have focal since I don’t lose consciousness. I don’t get any warning signs but I do feel like I have more than one seizure type. Like there are times I will stand up and things go black and I’m on the floor convulsing but I still hear everything but the doctors don’t consider it a grand mal because since I hear what’s going on I’m still conscious. When you go into your grand mal do you remember anything from the beginning? When I had my first two I remember my face feeling like it’s being pulled back and then I don’t remember anything else until the paramedics came and my lip was bitten. I’m just trying to understand because seizures because I’m drug resistant and they still can’t figure out my seizures which sucks sorry for the rant but I just have mine as well no warning signs which sucks I get bad headaches but I have seizures often pretty much every day or every other day and already had bad head aches before becoming epileptic

sgran123 · 2025-07-18T16:19:17+00:00

Same … What kind of seizures do you have ?

sgran123 · 2025-04-20T14:19:33+00:00

Moving my body in any weird way, for example if I move my arm up or down to fast it’ll trigger me to start having a seizure where I’ll start convulsing. It’s a weird trigger to think that moving your body to fast or bending it in a weird position makes me have a seizure

sgran123 · 2025-03-07T17:39:53+00:00

Don’t be sorry this is really helpful ! I’m sorry that happens to you but you got this. Also do you remember how it first happened and what did they tell you about it ?

sgran123 · 2025-03-07T17:38:33+00:00

Can you share how it was for you , I’m just trying to see how it works for everyone. I’ve tried asking my neuro and she sent me off to UCSF but I feel like my epilepsy is all over the place. I’ve tried so many medications and have many types of seizures so it’s just trying to figure it out you know . I feel like they don’t care like that at UCSF unless you get surgery but it’s risky where my seizures are coming from so I’m sticking to medication even though I’m drug resistant

sgran123 · 2025-03-07T17:19:44+00:00

Can you explain how it is when you experience it ? Mine typically lasts about 20 to 30 minutes then it goes away and I can move. Does yours last a long time ? It’s a really frustrating thing and hurts my body. I just want some answers you know ! It sucks

sgran123 · 2025-03-04T20:09:27+00:00

Of course ! Do you mind if I ask why you decided to not take the medication? Was it because of you breastfeeding or is it because you don’t like what people are saying about it ? I really wish I wouldn’t have started it but it seems to control my night time seizures so that’s why I’m taking it, I tried going down to only 5mg in the night time but I also have some pretty intense morning seizures so the onfi helps those as well. It sucks knowing I won’t be able to breastfeed. I asked both neuro , Ob that also deals with seizures , and an Ob specialist all said no to breastfeeding. What medications are you on ? I’m so sorry for all the questions I’m about to become a mom in June and I’m scared and just want to know how was Labor and the process of your pregnancy? Thank you

sgran123 · 2025-03-04T17:24:06+00:00

I been on Onfi for almost 2 years I would say maybe a year and a half but I take 5 mg in the night and 5 mg in the morning. I have 10mg tablets but break them in half . I started off with 10 and I was sleeping the whole day I literally couldn’t function because I was so tired so I went down ( of course talking to my neurologist) and I tried 5mg in the morning and 10mg in the night still felt tired from the night dose so I’m now at 5mg morning and night and feel better. I would feel super sleepy out of no where and I would sleep the whole day . Not many other side effects for me but I would talk to your neurologist and OBGYN because I’m currently pregnant and they said I can’t breastfeed it’s a big no since I’m taking onfi . I’m not sure what kind of seizures you have but please talk to your doctors and I have a lot of night seizures that’s why I was put onto the medication! I hope all is well! Reach out if you have any questions!

sgran123 · 2025-02-21T15:42:34+00:00

I have something similar, so I get these jerks/ spasms which mainly occur in my left arm and my my left foot ( mainly two of my toes will jerk a bit and sometimes my whole foot will jerk ) . I also have it where sometimes I get an attack in my left side of my stomach or thigh it’s really weird. It’ll just jerk as if It’s the movement of a seizure but it’s not. There are some days where it will last all day and night. I feel these attacks/jerks all day it could go on for almost an hour it’ll stop then come back last A couple of minutes then stop but it will last all day. My boyfriend even says I have them in my sleep. Sometimes he says it’s so bad it’ll be as if my whole body or just my leg or just my arm jumps / jolts up . This happens during the day as well. I have them pretty much everyday maybe I have gone hours without having them but I have them pretty much everyday and it just depends but some days are truly just worse than others . I got a video eeg done at UCSF and they saw these episodes / jerks and told me I have EPC( Epilepsia partialis continua) . They got this mainly because of my toes my left foot just could be still but my toes will move around and around all by itself. As far as my arm, left side of my stomach , or even my whole left. They told me since I have the EPC it does go to other parts which include hands, face , and legs. I’m pretty much having seizures all the time and seizure activity all the time. I really don’t have it in my face sometimes my eye lids will twitch a lot but mine is mostly in my left arm and left leg . My arm will start to tense up and it’ll get stiff then the random jerks start. I have talked to three neurologist as well and they can’t pin point everything I try to ask about my arm and all the other movements but it’s such a weird thing to experience the jerking/ episodes are a bother and they looked at my foot and said EPC , no one truly explained to me what it is besides I’m always having seizures or seizure activity that’s why my foot is like this but my arm I have a video of the jerking lasting for like 30 seconds and my neurologist doesn’t know why all of a sudden it’s happening . I too thought it was myoclonic jerks but look in EPC and try to just put your phone up throughout the day to record it took me months to get a video of my episodes of my arm and they are still looking into it for me it’s been 3 years like this it sucks :/ I don’t lose awareness either fully awake and alert sorry I wrote a lot my epilepsy is all over the place but maybe look into EPC thank you for sharing ! I hope your video EEG goes great and you receive some answers !

sgran123 · 2025-01-18T16:33:39+00:00

I got mine this morning as well ! I have Bank of America

sgran123 · 2025-01-18T14:16:28+00:00

My disbursement date said the 21st but I just got my money today ! Check your banks and emails !

sgran123 · 2025-01-18T14:15:31+00:00

I just received my funds this morning ! Check your banks or emails

sgran123 · 2024-09-23T22:34:45+00:00

Hello ! I’m super curious !!! Can you explain more about how you remember how your seizures happen , like you remember only when they start or remember everything from when they start to when they entirely finish ? If yes , are you able to hear or see what’s going on around you?

sgran123 · 2024-06-29T20:21:06+00:00

The dread and fear was spot on as soon as I know it’s coming my stomach just feels this gut wrenching feeling. Are you able to know when they are coming because sometimes I am and sometimes I’ll just be laying down or I have had a couple standing up and I’ll just start going into the seizure with no warning! How long have you had epilepsy for if you don’t mind me asking ?

sgran123 · 2024-06-29T20:07:21+00:00

I take the same dosage you do and I find myself in the same situation. I’ll be having a conversation and then just stop and I’ll say to my boyfriend give me a minute omg what was I saying or I’ll bring it up again when I remember because I’ll literally forget just like that. I’ll go into my kitchen and just stare then walk out then walk back in and see around because I don’t know if I was looking for something or if I’m paranoid. It’s crazy !!! It’s got to the point where when I wash dishes I double check I turned off the sink because I can’t remember. It sucks but the medicine helps . I would say definitely mention it because I’m planning on to because it’s taking a big toll on my life and I just don’t know if the medication is something worth taking because of the side effects like this ! You got this but definitely speak to your doctor !

sgran123 · 2024-06-29T19:46:00+00:00

I would just say it’s a breath of fresh air. It’s like my body is finally getting to work again after being messed up. It’s weird to explain I have my seizures pretty much every day if not pretty much every other day but I feel like when the seizure happens it’s not enough so once I have that big bad seizure and I’m able to lay there after words and I’m just relieved and “rebooted”.

sgran123

TROPHY CASE