r/seizures

I’ve had focal awareness seizures since 2023. I’m med resistant and tried Keppra, lamictal, Aptiom, zonegran you name it but my seizures stay bad even after upping the doses.

I’m at my wits end trying to work 40hrs and maintain a normal life but it’s becoming challenging. I’m stressing about having seizures and when I’ll have them or if I’ll be able to make it to work. I don’t even have any time left and have been out for two surgeries this year already

I’m Pennsylvania based. Is there any assistance I can receive?

I'm on 175 mg of lamictal twice daily

500 mg of keppra twice daily

I was taking Lexapro and abilify with the above meds, and it did help with my depression but I had a terrible time with the side effects so I'm coming off the Lexapro and will be coming off the abilify soon.

I don't have actual epilepsy. I have non epileptic seizures. Some docs think it's from stress, but they really don't know. All my tests (EEG etc) come back normal. No meds stop them completely. I can't drive, I can't have another baby. It sucks so gd bad

My seizures are typically partial ones. I've tried therapy, I work out, I get good sleep and nothing stops them. I am at a loss and just really need some support.

Does anyone have any similar experiences and they've come out the other side?

My cousin is autistic and he’s 18 lately he’s been having seizures and we do not know what’s triggering it. The thing is we can’t get him any help because his mother passed away six years ago and his father is in jail. We don’t know his Social Security number and we don’t have any of his documents so we don’t know how to get him a doctor and get help. Today he woke up with a swollen and black eye he also could not talk out of his mouth very well because every single time he has a seizure he bites his tongue really hard and blood comes out and we didn’t know he had a seizure until hours later when we saw blood on the floor because on the same day we had a power outage. He has an older brother who is nonverbal autistic who also gets seizures, but his were never this bad and my mother was able to adopt his older brother because he has a different dad than the 18 year-old cousin and my 22 year-old cousin who has autism his father, gave him away easily because he never even wanted him. Is there a way to get him an appointment without documentation?

Yeah...this is just another rant. My mom is very religious, and thinks she can send the demons out of me, or "IN THE NAME OF THE HOLY SPIRIT....!" it out after a seizure. Its the worst thing ever. I 'wake up' dazed, confused, tired, beaten up, with both parents at the bed and yelling AT MY BODY while holding my face. I get scared at first. Then she goes and cries. And she wants to take me to a healer. And I dont belive in a god but cant tell her. I know I cant understand what its like to witness a kid going through this, but having a person react that way just makes everything more bleak and scary. I'm going to a healer to get prayed over to ease her mind. My parents fast for me. I have no one to talk to about this.

Hey all! So my girlfriend suffers from seizures and has since she was about 12, but didn’t actually recognize or do anything about it until about 2 years ago where she started seeing a neurologist.

Anyways for those 2 years, she was off and on meds as she would struggle to remain compliant on taking it at the proper times. About 3 months ago she started Kepra at 750MG, before this she would seize a few times a week and have some cluster seizures thrown in there(these all typically happened at night in a shower or just before bed but typically her seizures tend to happen at night with no warning besides the “aura” and sick feeling just beforehand. I’ve done some research, I’m no expert obviously nor do I suffer from seizures, but I know they can be caused due to immense stress or changes like hot/cold water, flashing lights, doing things too quickly, etc. this is seems to check out because well, her main seize place is the shower, or at a rave, or just late night shopping and walking around she falls sick.

Anyways, she started Kepra at 750MG a few months back and her seizures went from kinda often to sporadic, maybe once or twice a week to none at all and maybe a cluster of them once a month if that. So to me and her, her seizures improved but not completely absolved.

Her neurologist attempted to put her on a new med that would supposedly do the trick or at least something to try out, but ofc insurance won’t cover. So the doc increased Kepra from 750-1000MG 2 weeks ago. That first week she had her period and she suffers more seizures during that time so when she started to seize more and more she thought nothing of it. This past week, she has still continued to increase her seizing to a few times a day again as if progress was reverting. The past 3 days she began to suffer clusters of 6 or so and then would be fine or well would knock out and go to sleep. Of course during these now increasing amount of seizing, she begins to stress more and panic more etc, but even so a lot of these happened just randomly she fell ill and bam, she’ll have the multiple seizures with no warning, no emotion bringing it on etc.

Yesterday she had so many clusters I had to give her nayziliam spray, which helped a few hours before she began to seize in groups again. Due to this immense stress and over work of her brain, she could no longer walk and if she tried, she seized. Ofc she would almost collapse everytime but I was with her and holding her each time attempting to help her walk but never making it but a few steps; so we went to the ER, where we are now.

She is now being seen by a neurologist and we have done a EKG and now a EEG, but the neurologist said something along the lines of, without any tests even being done, that he thinks she’s having panic attacks, not seizures and that it’s extremely common to confuse them. And I can see how they are similar ofc, but he said this is all most likely due to stress. Not epilepsy/seizures. I don’t agree with him. He then said Kepra, in theory should at 1000MG, halt all seizing. That’s simply makes no sense. She improved her seizures at 750MG and grew worse at a higher dosage, that either means her body needs to adjust and that’s why she’s experiencing more seizures or 1000MG just doesn’t suit her and isn’t the “sweet spot” for that medication for her.

I digress, i believe personally it could easily be a mixture of both panic attacks and seizures but you can’t just eliminate epilepsy and say it’s all stress because a lot of these seizures happen sudden, no warning, no pre existing stress, happy moods, calms moods etc. and if they were due to stress, why would Kepra at 750MG improve her amount of seizures compared to her having no medication. She went from multiple a week plus a cluster possibly, to maybe once or twice if at all while on meds.

I would really appreciate any advice and thoughts from those who know better than me/us and or has experienced this themselves. Thank you.

I (29 female) have a seizure disorder. I’ve been with my now BF for 2 years. I recently just had my first seizure ever in front of him and I don’t know how to handle it.
My brain is still in a fog and he can’t tell me much about what happened other then I didn’t know who he was when I “woke up”
I’m still learning how to navigate my brain after a seizure and really I’m just looking for advice on how to get out of the “fog”.
My ex husband said “it takes you a long time to get out of the “fog””, mind you my ex husband was very abusive and a lot of my seizures stemmed from him. This is the first seizure I’ve had that he had nothing to do with. I have to go back to work on Monday & can’t afford for this “fog” to last long. So really I’m just looking for advice on how to go back to “normal”

I basically have a seizure disorder. The first and the last time I had a seizure was the day after my Fluvoxamine 200 mg + Clomipramine 150 mg was changed to Fluvoxamine 300 mg + Clomipramine 150 mg. My neurologist told me that the antipsychotic I was taking with these medicines was not the reason for my seizure.