Hello! It occurred to me that several of my most recent seizures (past 2 years) have occurred while riding in a car (plus one while driving, haven’t driven since). Could car rides be a trigger? Any info or anecdotes appreciated! Thank you 🙏
I've had epilepsy for for over 20 years now. I'm 39 and seizures started while I was driving a car out of a driveway when I was 18 (thank the Lord for that btw). I've had every different type of seizure these past ~20 years but I'm not sure if I've ever had an aura. I've read and read about the different types people have with epilepsy, but my episodes seem to just come randomly with no forewarning, mainly in the afternoon the last few years for some reason actually.
My question is this: To those of you who do have auras, is there any doubt in your mind that 'this is an aura so I know an episode is coming'? If so, are there small things you notice that you tend to do before it happens, or a certain feeling, emotion, etc?
Thank you all beforehand for reading this. It is greatly appreciated!
Hi people, I noticed that there is so much negative opinions about medication, people are throwing right and left bad side effects. As a person with health/medication OCD, it really affects me, and in my opinion it can be a negativity bias. So to all people that are actually satisfied with their medication, have little to no side effects ruining their lives, rise up! Tell us your perspective 🥰
Last night I woke up around 3 AM on my back and both of my legs were hyperextended. Like to the point where I had to use my arms to bend them and change position it hurt pretty bad and I woke up with a headache. Most of my seizures are tonic-clonic nocturnal seizures. My main tell tail sign when I have one is I wake up with my tongue bitten and a headache, and I’m sore. This time my tongue wasn’t bitten. I am sore and I have a headache, but my boyfriend lives with me and he didn’t wake up last night, which he has for my seizures before… I am going to talk to my neurologist about it, but I’m not sure if I’m just overthinking it and it was maybe a weird sleep position or if it could possibly have been a seizure. has anyone else experienced something similar?
Does anyone have any experience of getting brivaracetam prescribed in the UK?
Teenager is currently prescribed Keppra as the sole medication. No seizures on the medication but is causing side effects. Diagnosis of genetic generalised epilepsy following EEG but clinically, seizures seemed to be focal onset.
Epilepsy clinic seem very reluctant to move from Keppra prescription. I’m wondering if this is a NICE / cost issue.
Suggestion is to trial weaning off medication altogether rather than switch, which seems illogical - there's nothing to suggest epilepsy has been grown out of (not a childhood type) other than lack of seizures, but that surely only shows the meds are working (albeit with side effects)!!
(20M) and currently on 100mg lamotrigine 2x daily and 750mg keppra 2x daily.
I recently had a seizure whilst travelling home after a 2am flight, and my neurologist (one of the best in the country, 30+ years of dealing with epilepsy patients in the best hospital in my country) has suggested that we taper me off my keppra as it hasn’t actually helped decrease the frequency of my seizures, whereas lamotrigine has. I would be brought up to 150mg x 2 lamotrigine to compensate for this.
I’m excited because not taking keppra will take away some of my side effects and will be less of a hassle however I know there are so many people out there who have withdrawal seizures . My life is very much normal in the sense that I work a job that involves lots of commuting every day so I’ll out in public a lot and I don’t want to be constantly thinking about it what happens if I have a seizure. Does anyone have any advice?
Hi I started getting double vision. Very scary and can last up to an hour.
My neurologist says its the carbamazipine (I have had my dose upped recently but still im on a relatively lose dose).
The odd thing is mine seems to be triggered by exercise... I worry its something more sinister.
Anyone else have similar issues? Did you come off Cabamamzipine?
I like marathon running, Im concerned its now added to the things I can no longer do.
I've had epilepsy for decades now and I always reflect the day before my birthday. Tomorrow will be my first celebrating without anyone, my immediate family doesn't live near me.
Anyways, I was thinking about how I felt like I missed out on so much in high school. My focal seizures freaked people out and so making friends wasn't easy and I never went to prom. Nor were my seizures ever under control to have the driver's license right of passage. Medicine didn't make things any easier for me at a personal level, always made me tired.
However, despite missing out on those life "milestones" I still marched forward with life and at soon to be 37 I can say that none of that matters in the grand scheme of things. I will take law school graduate and member of the California State Bar over that any day.
My point is, so many things we "miss" out in life is not as big as it seems. What should really matter is how you make the best of your everyday life!
Im Just genuinely curious because I remember when I was 9 years old I had a seizure in front of everyone and when I came back a guy of my classroom imitated a seizure in front of me. "He was Young" he was a just a bitch for me
Someone I love has had over 2 seizures, every seizure was triggered by overdose, or withdraw from alcohol. & just their recent one had led to a diagnosis of epilepsy.
Their family does not have a history of seizures. & they didn't start having seizures until mid 20s. They told me the specialist they went to told them they were born with it. But idk, it doesn't add up to me. I can't trust their word, & I'm scared for their family members & children for maybe having it as well since they were told they had them since birth. But I don't know if I can trust them, & if the truth is that their drug/alcohol abuse triggered the seizures to start, & its not something they had since being born. It's gonna hurt, but give me clarity that the children will be okay, & won't have it as they get older.
Can people with epilepsy leave this world when they have seizures? I remember a girl in my college who's around 18 or 19 left this world when she had seizures. Do people fear of becoming unalive due to this? I am not afraid of being unalive but afraid of the way I would become unalive, like with pain and agony.
(I don't know if I could use some of the words here so I mentioned "unalive")
Delete this if it violates community guidelines
I have had epilepsy my whole life. But in my 20s it has gotten worse. Bc of it I have been living in my parents house for 6 years because I can’t drive anywhere, and it’s really frustrating because it feels like the condition is taking over my life. I used to have it just on one side, but now it’s on both. When I was only on 3 meds we had a take home eeg and we found out that I had 5 seizures during the night, I also got up in the middle of the night, fell down the stairs and hit my head against the wall. I have seizures every 6 months and my neurologist says I probably won’t be able to drive in my life and I have drug resistant epilepsy.
I now take 4 types of meds and still have seizures every 6 months. In 24 hours I also have to take 9 pills to control my epilepsy, even though my seizures are now mild, the meds make me so incredibly tired. It’s to the point I am only up for 5 hours a day and I don’t even get a good nights sleep. My neurologist said if I got off my meds I would probably have seizures every day and if I got surgery I would still probably have seizures.
I was supposed to leave for France to go to school , but my parents are making me post pone it bc I can’t stay up at all. I’m so tired of this condition controlling my life and I don’t know what to do. I want to live my life! Because I can’t work right now and can’t drive I am signing up on disability, but I don’t know how I’m supposed to live on that low of money. Lastly, because I have epilepsy on both sides my seizures always look different. -Frustrated
tldr
I'm having a hard time and don't have a lot of emotional support and it's wrecking me, if anyone is open to being a support buddy or if you know of any discords or peer support groups pls lmk.
I would especially love to have trans friends/groups with seizures/epilepsy.
story below, I'd love it if you also read & responded to that but no pressure
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I've been having a lot of seizures for the last few weeks. Multiple times a day every day.
Long story short I've had them since childhood but never got diagnosed. I've been invalidated a lot and have genuinely just thought I was being dramatic this whole time and am finally accepting that they're seizures, I can't just make them stop, and it's not my fault.
(My PCP believes most of them are focal impaired awareness seizures, but I have had tonic clonic seizures before. I have a neurologist appointment but it's not until August. He prescribed me gabapentin and it helps but makes me so sleepy I can't stay awake so I can't take it a lot.)
I've had some scary experiences. Today I had one in a public bathroom on the floor. It was not great. I came home and had more seizures. One of them was also kinda scary. I'm not really sure what happened.
I've also been seen during/after seizures a couple times, including today. I've had a lot of abuse during/after seizures in the past so being perceived during that is genuinely terrifying for me.
I tend to isolate really bad during times like this and I'm trying not to do that. I desperately want support. I need support.
My two close friends aren't super available for support right now. I've tried to talk to other people about it but that's hard. So I'm feeling very alone in this. And kind of scared. And accepting it as something real, as seizures, and not just me being dramatic or needing to calm down is... hard.
I'm already chronically ill, I struggle with mental health stuff, this has been going on for a long time; I'm not new to the knowledge or reality that I have limitations. It changes some things about the present and future but not a ton honestky. If anything it makes me feel like the limitations I know I have and the accommodations I know I need are real. But idk. There's something about realizing I have seizures and probably have epilepsy that makes me... scared. And angry. And sad. I feel grief.
And it's partly for the present/future but the anger and grief is around not having been diagnosed and gotten proper medical care years and years ago. Everything in my life could have potentially been so different with proper care.
I'm really sad that my friends aren't available and I'm upset, which feels stupid because they're both going through things and genuinely haven't had the capacity. I don't blame them for it. But I'm still having feelings about it.
I know I need more community. I've reached out to some people through local groups and am going to try to make more friends locally (I moved here like 6 months ago and have only made a few friends so far). But it's really hard. I have veey low energy right now. And I don't want anybody to see me having a seizure. I want to get over that.
I'm more upset about not having support than what is actually going on, which seems silly to me? Like, I can deal with the practical issues. For example, not being able to drive is upsetting and really difficult in my area but I can figure it out. But I'm having really big feelings and no one is there to be in it with me right now. I feel alone. And I hate it.
So my son had his first seizure TC when hi was 4 years old, the second seizure was 6 months after and the diagnosed him with Epilepsy and put him on Keppra. The EEG , 24h EEG and MRI were all normal. When we started Keppra after the first 2 weeks he said that he wanted to kill me and kill himself ( 4 years ol😢🥺) so we switched to Briviact 25mg immediately. He was fine on Briviact and he was seizure free for 2 years so his neurologist took him off medication ,what a relief I was so happy....
7 months later (this March)he had another seizure Tonic-Clonic and his neurologist told us to start Briviact 25mg EEG and 24h EEG are normal again, so I still don't know why he's having those seizures? And nobody can give me answers.
I don't know if anyone had experience this but because we restarted Briviact after 7 months now he is having high side effects ( he mentioned that he wants to kill himself ,he doesn't want to be around people, doesn't want to go to school, doesn't want to be around kids at school, he is angry, yelling at us like he is the adult in the house.) He is not the same child at all,and it wasn't like that before. So I call his neurologist and ask to stop medication or to switch it ,she told me that we can start lacosemaide but I'm to scared to start new medication....
Dose anyone had experience something like that? Should I start his new medication or should I keep him on Briviact at least Briviact kept him seizure free for 2 years 🤔
Sigh.
How could I have known I was a part of the 0.1% whom is affected?
I'm lucky I listened to my gut. Even more lucky that I work as a pharmacy tech, which gives me a small amount of knowledge... I started my next titration pack of xcopri yesterday, 50mg-100mg. I'm drug resistant. The cocktail is tough already, as you guys already know how tough it can be. Lacosamide, lamotrigine, ethosuximide, then the xcopri 5 weeks ago. I was excited to see if this was the fix. I ended up throwing up the 50mg about 30-40 minutes after taking it. I thought nothing of it because it's already been a tough titration. DO NOT DOUBLE DOSE. Then I looked at my face in the mirror about 2 hours later.
Never have I EVER seen so many small flat splotches on my face, then this morning I woke up worse. My face red with more colorful small dots, almost as if I had broken capillaries. I was hoping it was just from me throwing up the night before. But why am I itchy? Why is my face hot? I don't have a fever.. no swelling.. no lymph nodes swelling or extremities. My throat hurts a little. But this just started last night. The rash has only spread to my neck but I'm itchy further down with no redness or spots like my face??
I take an antihistamine every day for asthma management so it probably is helping with any swelling.. My neurologist office squeezed me in today with a different doctor and confirmed I caught DRESS very very early. My worst nightmare, I was even worried that this would happen with just lamotrigine.. We agreed that I'm going to no longer take xcopri anymore, no titration down needed due to the small dosage, and I put a rush to my blood work to get done today, I wanted make sure any of my vital organs havent been effected and the xcopri is still in my bloodstream for the most accurate reading.
I'm unsure if anyone is familiar.. DRESS is life threatening and presents itself in many ways, particularly as a rash starting on the upper body and face, in my case, 2-8 weeks during whichever new drug you're taking (a lot of seizure drugs have this warning). I'm only 24. This is scary. I wish there was another way beyond VNS. Regardless, reading up on it, having asthma does not make me a good candidate. I haven't tried the oral suspension options yet, as much as I don't want to (yuck) but it sounds like it's on the itinerary soon.
I just want to cry. I knew this road is tough and was going to be hard. If anyone else has experienced DRESS... I'm here with you, you're not alone. This is tough. And I'm even more sorry if you or your loved ones caught it too late..
Sometimes looks like im an alien.
Anyone feel The same?
Caffeine is one of my big triggers and a coffee shop accidentally gave me a quad shot instead of a decaf. I got halfway through before I noticed. Now I'm doing my best to not stress (another trigger) and hope that my body can just pretty please not have a seizure or a load of PVCs.
The barista feels god awful so I'm not mad, just worried. Ok maybe mad too, but more so at my bad luck, not the barista.
My son is 21, he was diagnosed at 19 after two seizures (TC). Then he was seizure free for 18 months and has had two since December last year. Since December, he’s struggled with ‘symptoms’ that I’m now suspecting are small seizures and maybe more than one type of seizure. Forgive me I’m learning on the fly here. We were handed lamotrigine by a neurologist and have been given no follow up or support or information. Which I didn’t realise wasn’t normal until I called an ambulance this weekend during a seizure. We will be seeing a different neurologist soon ( I hope), and I understand it will be a journey, with testing.
My question is more about how I support him in the meantime. He’s been told he isn’t allowed to game until we have more information (it’s definitely a trigger but he’d been doing it in small doses). He does all the right things with exercise, diet, sleep hygiene, hydration etc. Right now he feels hopeless, gaming has always been his favourite thing, and very social for him with both friends and siblings. He has been trying to find a new job for months, and now he’s further limited due to no driving. He’s autistic/adhd (high functioning, although I hate that description method) and dyslexic. My heart is breaking because he has another thing affecting his executive functioning now. He’s also very intelligent.
He needs to find an alternative hobby/interest, for his mental health’s sake. (I know he needs processing time first). Does anyone have any suggestions? Fine motor activities tend to set off symptoms too. What do others do for work? He’s open to ideas, he’s just never known what he wants to do.
I don’t want to hover, or push him too much. It’s heartbreaking to watch, and I just want to give him hope in whatever small way I can. If you’re a young person with epilepsy, I’d love to hear how your parents helped, or what you wish they’d understand about your situation.
I’ve been taking Lamotrigine for epilepsy. Recently I was admitted to an epilepsy monitory unit to assess my condition, and of course they took me off of this, so now I’m on 0 mg.
I’ve been here for about a week and I’ve gone through some terrible emotions here. I don’t know if I can attribute it to the Lamotrigine withdrawal or just being here. I feel a layer of brain fog, extreme anxiety, fear, obsessive thoughts, a degree of hopelessness. The worst part is I have almost no appetite.
I’ve also started having seizures daily. Prior to coming off Lamotrigine, the seizures were almost controlled.
Do you guys think I’m experiencing withdrawal from Lamotrigine or I just hate being here…
I am just over three years into this epilepsy journey. Really struggling. I always have one the day before or the day after. But never during the test.
BUT I GOT ONE!! I GOT ONE!! And I truly hope any of the information helps.