Repost from askdocs. I’m at my wits fucking end.

i don’t have epilepsy, but something really weird happened to me yesterday, and it scared me real bad.

story:

i got up from my bed to tell my mom something,
and i started crying for her without even realizing what i was doing or saying, i didn’t even register the fact that i was crying for her, it just came out.

when she meets me at the bedroom door, i look around, and her body looks warped and squiggly. have you ever seen heatwaves radiating above a fire? that’s what the world looked like, and i felt myself slowly melting away. it was such a hard feeling to describe, and i could hear my mom talking but i couldn’t understand what she was saying.

2 seconds later, i’m in my bed, and i don’t remember getting there. but i snap awake quickly, and look around confused. my mom says she didn’t notice anything unusual and that i looked fine, but she wasn’t in the room the whole time. i think i may have lost consciousness for like 2 or 3 seconds.

afterwards, it felt like a fake memory. like it didn’t happen, like my awareness was weirdly cut off and it was just a dream. it’s SO hard to describe. but now today, it’s so difficult to explain what happened because it feels like it never did but in a weird way that i don’t know how to explain.

but then i got SO tired. like… EXHAUSTED… a type of exhaustion i don’t feel very often, i felt like i was gonna throw up, fall through the floor, and fall asleep literally anywhere because i was so tired.

weirdly similar things happening:

pretty much my whole life i’ve had these mini moments where i “glitch out”, i get butterflies in my stomach and i feel insanely intense deja vu, but it’s only ever lasted for one second. but it leaves me confused for a good 2 seconds afterwards, like i can hear people talking but i can’t make out what they’re saying.

over the past 2 weeks, these “episodes” have gotten more frequent and have been giving me so much anxiety, and it’s been building up until that weird thing yesterday.

i have this gut feeling that somethings wrong, but my mom said it’s just because i was hungry and got low blood sugar and that i’m being overdramatic and nothing is wrong.

question:

could this be a seizure???

what could this mean???

i don’t have epilepsy, but something really weird happened to me yesterday, and it scared me real bad.

story:

i got up from my bed to tell my mom something,
and i started crying for her without even realizing what i was doing or saying, i didn’t even register the fact that i was crying for her, it just came out.

when she meets me at the bedroom door, i look around, and her body looks warped and squiggly. have you ever seen heatwaves radiating above a fire? that’s what the world looked like, and i felt myself slowly melting away. it was such a hard feeling to describe, and i could hear my mom talking but i couldn’t understand what she was saying.

2 seconds later, i’m in my bed, and i don’t remember getting there. but i snap awake quickly, and look around confused. my mom says she didn’t notice anything unusual and that i looked fine, but she wasn’t in the room the whole time. i think i may have lost consciousness for like 2 or 3 seconds.

afterwards, it felt like a fake memory. like it didn’t happen, like my awareness was weirdly cut off and it was just a dream. it’s SO hard to describe. but now today, it’s so difficult to explain what happened because it feels like it never did but in a weird way that i don’t know how to explain.

but then i got SO tired. like… EXHAUSTED… a type of exhaustion i don’t feel very often, i felt like i was gonna throw up, fall through the floor, and fall asleep literally anywhere because i was so tired.

weirdly similar things happening:

pretty much my whole life i’ve had these mini moments where i “glitch out”, i get butterflies in my stomach and i feel insanely intense deja vu, but it’s only ever lasted for one second. but it leaves me confused for a good 2 seconds afterwards, like i can hear people talking but i can’t make out what they’re saying.

over the past 2 weeks, these “episodes” have gotten more frequent and have been giving me so much anxiety, and it’s been building up until that weird thing yesterday.

i have this gut feeling that somethings wrong, but my mom said it’s just because i was hungry and got low blood sugar and that i’m being overdramatic and nothing is wrong.

question:

could this be a seizure???

what could this mean???

Im getting an eeg done in a week but i want to know if these things together can happen in pnes or if it only happens in epilepsy. I am curious to know what these things could point to. Ive been having daily seizures (at this point i literally call them seizures because my neurologist said its likely epilepsy or pnes). Some of the concerning symptoms are,

my right pupil is temporarily bigger than the left (im not sure how often this happens because i dont check every time) im pretty sure this happens right after my episodes, im not sure if it happens during or not. Mild cognitive impairment, i cant think correctly anymore, like i have no internal monologue anymore unless i force myself to have one, if im reading, or it very very rarely comes naturally. Speaking of reading, i can still read but i cant process long paragraphs, especially ones i don't write myself. Like this is going to take me a whole 30 minutes to completely finish making this post even though i am writing it, probably longer. Also my memory is getting worse, like concerningly worse. I cant remember a conversation i had yesterday in detail. I keep forgetting plans and doctors appointments. For example at least. Also on the not thinking correctly thing, i can think, i guess, but its more like i think of concepts and not words and not images. i dont think of something and say it, i just say it. I act completely impulsively i dont think before doing pretty much anything. My motor skills are worse. My balance has been terrible since one of the first seizures i had. Also my speech seems, off. Like even long after the seizures, my speech is slightly slurred and just doesn't sound right, i dont know how to explain it. Another thing, my eyes very slightly bulge. Not swell. They protrude. It isnt persistent, just during and after seizures. I have been checked for thyroid issues, it was completely normal. Ive also had a full panel done, my doctor also checked for autoimmune disorders, deficiencies, and a few other things. Everything in my bloodwork was completely normal. I also stop breathing during episodes sometimes. Two people have told me i turn pale (one saying i turn slightly purple and other person saying i turn pale white). One more symptom i will talk about that i have is nystagmus during the episodes and going cross eyed during my episodes. My mom and a friend noticed my eyes literally shake, and one of my eyes goes outward to the side

Hi- I have been a hairdresser for the last 20 years, and have owned my own salon for the last 14 years. My son was diagnosed at 5 with epilepsy. His seizures have been managed with meds for years until these last few years. Since 2023 they've become more frequent and more debilitating. I've struggled with managing my work in the salon harder and harder to manage, and honestly, I'm just burnt out in all areas. Did I mention I'm also a fitness instructor/personal trainer. I do specialize in rhythm based spin rides, but am educated in all areas. I just cannot leave him alone as we start to transition doctors and med changes, but I have to pay my bills and at least get my debt paid down. I'm looking for a remote job that doesn't require anything outside of daily business hours. Running a salon and being a fitness instructor has served me well, but I'm burnt out on being everything for everybody. I need a break. Please help 😣

I'm 18 F and I just got admission in my fav uni for my desired field(Software Engineering). I was excited, everything was going well until I started consulting neurologists related to my past seizures history. The first neurologist we consulted advised us to get my blood test, EEG, brain MRI and spinal tap done asap as my condition didn't seem normal to him. We got all of them done asap and showed the reports to him, he said there was some sort of fluid in my brain but the spinal tap process thing....my parents were scared as its process was really risky and it could lead to life long injuries and stuff....so they decided to get a 2nd opinion just to be on the safe side. We consulted one of the top neurologist here in PK (Dr. Khalil uz Zaman) and he said that her condition isn't too risky if she takes her meds on time. He even said that there was no need to get the MRI done aswell -.- He gave me really heavy meds around 550mg for morning and same for night, lamnet 3 times a day, and sleeping pill for night. The dose was too high!! Well what he said at last nearly gave me a heart attack!! He said SHE CAN'T USE PHONE AT ALL AND CAN ONLY USE COMPUTER A LITTLE??!! My mom replied that but she's pursuing her Software engineering degree and he replied WELL, WHAT CAN I SAY?? ITS EITHER HER LIFE OR HER DEGREE, YOU CHOOSE WHAT YOU PREFER!!! Now I've lost all hopes! 😭Programming and getting into UI UX designing making websites etc. were all my fav stuff since childhood😔 Now there are assignments and all other stuff which obv require me alot of screen time and my parents are worried about me so....I might have to drop out...

I just want to share my postical state with everyone. I got severely broken up Saturday night while apparently seizing tonic clinic on the floor. After that I have spent the next two days in a fog not remembering what I do for work or who half the people I work for are. I feel so low having these seizures like I’m going to get fired and be homeless. On top of that I think I’ve broken of fractured ribs and am bruised all over my body. All my joints are clacking constantly and my ears are ringing terribly as well as my sense of smell going overload. Anyone else feel this way after a big seizure?

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

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 👍

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

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

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.

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.

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!

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.

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

Hello, I have a question for those who have gone for monitoring. I have Periventricular Nodular Heterotopia, so my seizures are complex partial, I was diagnosed 7 years ago and had my license revoked. My seizures aren’t severe but they are drug resistant. I have gone through many different meds and finally started taking Lamotrigine and my symptoms have gone from 4-5 a month to 3-4 over the past 5 months. I am taking Carbamezapine and Leviteracetam as well. I am about to go in for monitoring in a couple of days, am nervous about it. My new meds are making things better and I’d like to be able to drive again. Is it worth going in? Or should I ask my doctor to up my dose and hope for the best. I am scared because I can’t contact the surgeon and discuss options until the day before! It’s taken 7 years of different medication and symptoms have gradual gone down, I have a normal life besides driving. Is it worth doing??

The weather has been super hot where I live and I think it’s definitely played a role in the recent seizure cluster I’ve had over the past few days. I have TLE and have focal aware seizures and focal impaired awareness seizures.

I’ve been struggling with the postictal symptoms - specifically, exhaustion; feeling disconnected from myself, my personality and my memory; intense irritability; brain fog; feeling the need to isolate myself; feeling very anxious, flat, overwhelmed and down. I’ve spent the last 3 days at home resting (besides for going for coffee yesterday), not wanting to do anything or talk to anyone. I become overwhelmed and get overstimulated super easily in this state. I went for coffee with a friend yesterday and I felt disconnected and flat. I couldn’t access memories about myself or even my personality so I relied on my friend to carry the conversation. The only thing I could add was that I had had a seizure the day before and was still recovering from it😂
While experiencing all these symptoms, they seem to last too long to blame being post-ictal so I blame myself (my own issue). Only when I feel better with time, do I realise it really was just seizure recovery and not me.

Please share some tips on how to cope during the post-ictal phase. And what are some things loved ones can do to help you while you recover?

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?

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

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....

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 😊

I’ve spent the last two years believing I’ll never have a child of my own.

I got in my first relationship two years ago and my neurologist told me that because I’m on zonisamide if I had a baby there would be tons of risks and it would most likely come out with some sort of disability. Because of this my mom and neurologist pushed me onto a birth control that has been really bad for me and caused constant bleeding for about one and a half years.

Two weeks ago a doctor put me on a second birth control on top of my normal one to control the bleeding and I feel like a completely new person, like I’ve been in a depression and not myself for the last year and a half and its made me sad I ever went on it in the first place.

Today I saw my neurologist again, and after two years of me believing I’ll never have my own child as I don’t want to have a baby with a disability due to tablets and I wouldn’t risk going off tablets and having seizures throughout pregnancy, I was told there’s actually not much of a risk.

It’s very much safe to say I’m mad as this is something I think about a lot, I’m 19 and obviously have no plans but to think it was over before I even got the chance and now being told I’m completely fine. She told me that there’s not any research on zonisamide alone as it’s a drug added onto more tablets, but she’s been working with pregnant epileptics for 7 years and they’ve never had any problems.

2 years of worrying, and now I’m told I should be fine, a year and a half one birth control that was turning me into a completely different person because I knew I had more risks than other people, and I was being misinformed the whole time.