I was on Valproate, now Lamotrigine and Brivaracetam, I feel like I was better without Brivaracetam and purely on Lamotrigine, so my question is like how many types of medication have u gone through.

Has anyone been on like i dont know, 7 diff types of drugs and none worked or they did?I just wanna know if drug-resistants are like lost cause and theres not much to do besides admitting there is no hope?I know theres plenty of drugs like 12 diff types or something but has anyone tried all or got to a point where they actually worked?

I had a seizure early in the morning before an oral exam with a teacher i really like and respect for one of my favorite classes. one side of my face was drooping and i didn’t notice until afterwards and i was still slurring a bit. my hair is always messy no matter how much i brush it so it probably looked like i was high af. Halfway through the exam i had to stop and explain that id had a seizure that morning because i couldn’t remember names or the answers id spent a week studying for and preparing. i hate making excuses and feeling or treated like im not normal or capable.

i’m just so fucking embarrassed and frustrated. I’m glad it was just a pretty minor oral exam and not a serious final or an interview or something, but i’m just fucking pissed off. my seizures are mostly controlled with meds I’m not supposed to deal with this shit anymore! my teacher probably thinks i was on drugs or just unprepared. i fucking studied. i fucking like this class and i want the teacher to like me. ik that sounds gay but its true and im just pissed off.

So not sure if anyone knows this but in November it’s epilepsy awareness month, which I know not a lot of people know about because I feel like breast cancer and everything else’s they think is more important which I kinda get but epilepsy awareness month is in November and I think it will be a great way to spread awareness, so it’s almost time. Can’t wait.

Having failed two anticonvulsants (one was becoming less effective and the other had terrible side effects) I have been prescribed another by my neurologist who I have been seeing privately because of past awful experiences with the NHS. I’m currently on nothing and feeling awful.

Due to my GP constantly forgetting about me, test results getting lost, and communication going wrong, I waited 11 weeks for my medication to be issued to me. I was then told by my GP that they couldn’t prescribe it as it’s an ‘Amber’ drug that requires issuing and monitoring by a consultant.

They referred me to an NHS neurologist (because I also need another EEG and MRI) and today I have been told the appointment is 5.5 months away.

So I’ll have been waiting nearly 35 weeks, or exactly 8 months just to be on an anticonvulsant.

Technical physicians Arthur van Nieuw Amerongen and Celine Luijendijk are working on an EEG measurement with a water cap that patients can do entirely themselves. This summer they showed their innovation at Teknowlogy, NWO's innovation festival in Utrecht. Source

Full article translated to English

An EEG is one of the most important tests for epilepsy. Yet you almost always have to go to the hospital for it, even though you usually experience your symptoms and seizures at home. That is also a limitation for research: large-scale research into epilepsy is difficult if an EEG can only be done on location. Technical physicians Arthur van Nieuw Amerongen and Celine Luijendijk are therefore working on an EEG measurement with a water cap that patients can do entirely themselves. This summer they showed their innovation at Teknowlogy, NWO's innovation festival in Utrecht.

Water instead of gel

"In a regular EEG measurement, gel ensures good contact between the electrodes and the scalp," Celine explains. "The water cap instead works with sponges soaked in a saline solution." First, the researchers wanted to know whether the technology itself was good enough. Together with TU Delft, they tested the cap on 20 healthy volunteers and compared the measurements with those of a gel cap. The signal quality turned out to be very similar. The neurologists who assessed the measurements were also satisfied. "This is an important milestone for us," says Arthur. "We need the trust of neurologists to make self-measurement a success."

Then another 20 volunteers got to work with the cap themselves, to find out whether they could put it on and connect it correctly on their own. They did this with the help of a computer program that Celine developed during her graduation research. In it, they could see which electrodes were positioned well and which still needed attention. Most of the volunteers managed the measurement, and the neurologists were able to assess the majority of those EEGs. "For people doing it entirely on their own for the first time, that's a nice result," says Celine, who is now doing her PhD research at SEIN. "But we also saw where it still went wrong, and we've been working on that."

From healthy volunteer to patient

"Ultimately, it's about our patients," says Arthur. "Can they also manage to use the cap independently?" After some improvements, the researchers started the SELF-EEG study. Patients admitted to the observation ward in Heemstede first receive training. The next day, they put the cap on entirely by themselves. The goal is to measure 20 patients using the water cap, and that number is nearly reached. Sometimes people with unexplained seizures also take the measurement system home with them.

Nurse Cynthia works on the observation ward and is positive about the collaboration: "It's going well, because the communication with the researchers is very pleasant." The researchers prepare the patients well. The ward mainly keeps an eye on whether patients feel comfortable with it. "If we notice that it causes too much stress or anxiety, it's no problem to stop the study." What stands out to her is the motivation of the participants: "The patients taking part say they want to do this because they feel they're doing something for others."

The appreciation is mutual. "We really feel welcome on the ward," says Arthur. "The nurses actively think along about suitable moments to measure. The doctors also contribute a lot: they look for suitable patients for the study and provide information in advance. We're very happy with this collaboration."

Listening to the user

The researchers also ask patients how they would like to use the water cap. "That yields valuable responses," says Celine. "For example, the need to follow the course of the epilepsy over a longer period. And some people sense their seizures coming on. They especially see the added value in being able to measure themselves at that moment."

There is still work to be done. "We still need to package it more into a user-friendly kit," says Celine. "It really needs to become fail-proof. Ultimately, we want it to work from A to Z at home, without any help being needed."

Are the jerks which make your whole body trigger and feel itchy and numb normal? Or is it due to my seizures? They last only for like 1-2 seconds and everything goes to normal again. And they are at random needle like spots. Actually I don't have much info regarding epilepsy and I feel dumb asking this question bcz this might be normal....

I’m sick, recovering from a concussion while going to school that has little to no accommodations for me. lol can’t tell if it’s the keppra meds making me bitter at everything or my memory loss.

my roommate thankfully was with me but i fell off a barstool and he put a pillow down and there’s blood all over it. i know i need to make better decisions, but ive been on a bad alcohol bender the last couple of weeks. usually im a stoner but i haven’t hit a bowl in so long because i feel like that will more likely give me a seizure compared to alcohol. seizures are so embarrassing, and ive never seen someone have one myself. i feel bad for the person that has to deal with it. it must be so fucking scary for them. this disability is so draining and makes me really hate my life. i’m extremely suicidal and have had multiple attempts (the alcohol i know will kill me so that’s why i keep drinking it without giving a fuck). i am so grateful for this subreddit, and i go on it a lot to remind myself that i am not the only one. idk if someone remembers me but in 2023 i was put in a coma for 3 days after doing shrooms. yall im dumb as fuck, and i’m constantly in the hospital and cope in the worst way

Parents think that because I can’t drive I’m there slave and needa do everything around the house and “ I don’t do enough and need to stop being depressed” I’ve tried to explain that them making me always stay home and do everything makes me depressed asf because it makes me feel worthless but they don’t seem to care all they see is a disabled person who they can use as a maid that can’t leave mom lost my ssc so I can’t get an id or anything to start my life and she says “ I’m working on it” all she does is watch her shows or work on her little projects been asking for help with that’s stuff since I was 15 I’m 18 now

I had the dual feeling of my body tilting to the left and strong sense of vomiting. I’d been looking at my monitors for a couple of hours at that point so maybe it was screen time, but is anyone confirmed that nausea is linked to their epilepsy?

So i was diagnosed roughly 4 monthes ago, apparently my 40 "really bad panic attacks on steroids " I was having were focal awares. Not to mention its caused by one of the most rare and often med resistant reasons, a brain malformation i was born with. Didn't cause symptoms till I was older ofc. Im already above my dose of what my nero "thought would work" For example , I'll smell smoke or something when I wake up, start getting extremely anxious then realize my neighbors are just having a grill out of something. Smelling auras arent even part of my sezuire "profile" so I have no idea why they worst part of the anxiety is tuned in on that. Im going to a therapist but she barely knows anything about how epilepsy works so she doesnt really know what to say. Sorry kinda a ranty post aswell but yea begging for tips and tricks for this crippling anxiety.

I started out with Topiramate ER because I really want to be able to be on a one-a-day regiment due to my unpredictable sleep schedule, but had to stop because the effects were intolerable even at a dose that wasn't preventing breakthroughs. Now I'm on lacosamide, whose side effects are... better, but the twice a day thing is becoming an issue as winter approaches. I slept through my alarm and had a biiiig breakthrough, and I'm worried it's because too much time had passed between doses.

Which meds are there that only require one dose a day, and for those who are/were on those meds, what was your experience like?

Question/Rant

So I'm used to the normal extreme fatigue, little bit weird feeling for a while after a seizure but Saturday morning i had a seizure in bed and since then everything feels off and weird, food and drink tastes and feels weird in my mouth no matter what i do. and if i focus on it, it almost feels like im gonna have another seizure. im just not sure what to make of this, i dont know if it has to do with the new medication i just started (i got the Lamictal rash almost into Steven-Johnsons so they put me on Vimpat) but its worrying me and i just needed somewhere to vent and ask if anyone else has had this and has any advice or anything like that. sorry if this is hard to understand i am not very coherent still

Recently had my diagnosis switched from hemiplegic migraine to focal aware myoclonic seizure. I had an abnormal eeg in college but never went anywhere with it (I was young and didn’t want to be bothered I guess). Had a large stint seizure free but now in perimenopause they’re back. They are also linked to my hormone cycle.

I guess I’m just posting for community comfort and any advice. I just started on keppra and I’m trying the keto diet. Anyone have success with that combo?

For the ones with a uterus that triggers their seizures!

Okay so, my doctor has me on some pretty convoluted meds to help with my seizures and hormones. Big ones here are micronized progesterone and clobazam during my period. I tend to have more seizures during my period AND while I ovulate, so the goal was to rid of my period/ovulation cycle entirely. I haven't had a full period since June. She put me on clobazam in July, and I've never actually taken it. (Also for some background so people don't recommend it: I've tried an IUD three times, by body rejected it entirely).

ANYWAY. To the real question! As mentioned I haven't had a period since June, but I began spotting last weekend, super briefly. But then again this weekend, and it hasnt stopped which makes me wonder if this isn't spotting, but an actual period incoming. Would you begin taking the Clobazam? I could ask my doctor but I know their response will take forever and if this is a period or will be over by the time their response comes in 😅 I will ask them what to do in this situation when I see them next. Just curious what others would do in a situation like this.

Ty in advance!

The other night while going to bed, I had a seizure and afterwards I did not get better. My muscle spasms got really bad and I was shaking all over, I was having a really hard time speaking and I jsut felt like I had not control over my body. Eventually I managed to call my sister who was sleeping like to my up but not above me ifyk our beds are next to each other and after like 5 ish minutes I made the decision to call my mom. My mosm rlly skeptical about all this so I didn't call her first thing which ik I should have and I would have if things weren't the way they were with her.

Since I couldn't stop shaking and It was rlly rlly bad we went to the hospital and just walking and being about helped a bit but not very much, it would get better and worse again and it felt like I might have another focal at any moment and I was also getting dizzy at this point, lucky for me the hospital is like right next to my house.

Instead of letting us go emergency, they made us get a number and all that stuff and wait like two ish hours all while I was still shaking and it was getting worse by the minute and I was shaking in places Ive never shaken so badly like my head or jaw since it's usually my arms or legs.

After all of that and the long wait we finally met the doctor and she just Siad it's anxiety. No meds or anything to help it, I was told by many people here that they'd give rescue meds and stuff if I ever did go but they only gave some medicine for gas I was having which was unrelated. They told me to go to the emergency room if I was experiencing dizziness and "abnormal body movements" as if I havent been for the past liek 2 hrs 😭

We were already denied entry to the emergency room and we could technically go now with doctors permission but it was really late (2 going on 3 am) and I had to come back the next morning for a bunch of tests so we made the decision to go home but I couldn't sleep anyway cuase of the shaking and muscle spasms till like 4 anyways, everytime I'd get close to fall asleep they'd get worse again but eventually I did and now I'm still having tremors here and there and a more persisting tremr in my jaw albeit it doesn't affect my speech much. Haven't gone for the follow up since I haven't gotten the test results back but will eb going soon 👍

33F, in my fourth year of on-and-off seizures. I haven’t driven since my first seizure. My last cluster was 11 weeks ago, nine seizures, followed by four days in the hospital. My medications have changed. I’m starving, but everything tastes bad. I have no energy and am tired of watching TV and cleaning. I feel like I’m going insane, but can’t physically react because I’m exhausted.

Do or have any of you while taking higher doses of medication experience severe dizziness or unbalancing symptoms n double vision like 30-1 hour after taking them? And yes I have talked to my doctors about it in case anyone will ask

Started with an old stroke being found.

Currently titrating lamotrogine 50mg at night 25mg in the morning till it’s 75mg both times.
He had a seizure then went over 3 months without them, got put on lamotrogine and now it’s over a month and had two at once.

It seems to be within the first 10 minutes of falling asleep.

Doctors have put him on a phosphate drip and sending him home, but I’m petrified, I’m not sleeping waiting for my mum to wake me up for a seizure and I never handle the situation well.

Feel lost tired and drained and most importantly so sorry for my dad

My new meds make me feel like in the Truman show. It’s really freaking me out and I don’t know what to do other than cut back down and hope the seizures don’t kick up

Between having epilepsy, POTS, MCAS, EDS, a spinal cord injury and post-concussion complications that even make READING hard, getting a job has been so extremely hard. I have tried everything at this point and nothing works. I have dreams I really want to achieve, even just small parts of them. So I'm exhausting every resource I can possibly get to, from Etsy to gofundme to applying for disability. And I feel so frustrated with myself as I'm seeing nothing seems to be working in my favor. I wish this condition wasn't so disabling, I wish I could just flip a switch and make it all go away. And being accused of "faking" things or being dramatic pisses me off so bad because there's no way I could continue to miss out on all the dreams I have for so long now. I don't even need to "not be sick", I just want the world to be accommodating. Ugh

So I started having seizures back in April, they were once every couple of weeks, then it increased, but 2 weeks ago I had 5 in 4 days, two on the same day. Despite medication being increased since June, they seem to have gotten worse. I am under severe stress but not sure if it’s linked.

I have my MRI scan on Friday and I’m super nervous as I was unfortunately severely assaulted last year, which left me with life long injuries, and then these seizures started… I’m worried there’s something that’s going to be found 😔 has anyone had MRi for their seizures? How did it go? I don’t know what to expect. Just worried about the unknown, I am finding it so difficult to accept when they can’t seem to find a reason why they are happening.

i suffer tonic clonic seizures for context

thanks all 😊

M/24. I had a seizure at 11.30pm last night, 6 months after my last seizure.

It only lasted 1 minute. Before my last one, it was another 6 months since I'd had one. So my seizures are now once every 6 months. I'm getting pissed...

I'm getting to a point in my life when I want to think about changing jobs, buying a house and I just can't do that easily without driving. What if the house isn't close to a train station? What if the train station doesn't go to my work? What if there isn't a train station near to my work? It's so frustrating to be handicapped to where I can work and live. Also, relying on my girl to drive us everywhere. Just because I have a little seizure once every 6 months.

I have drove previously too, 17-19, 21-22. I've had a taste for it after giving up my license and then it all taken away again after being fine for 2 years. I was on much less meds then too and I was completely fine. I don't get it.

Anybody living similar circumstances

What meds do they have you on?

Is that still possible? I really worry it's not especially with it being a huge part of my life - I know I need to get my seizures under control but I don't know if I could give that up either