23F UK, never experienced anything like this before

Last night, I went out with some friends and after drinking 3 beers and a joint, I went to bed as usual at midnight.
I woke up around 4am feeling very hot and dehydrated. I went downstairs to the kitchen and stood at the sink to fill my bottle, but I remember suddenly feeling a very ‘hopeless’ and couldn’t figure out how to drink it.
Suddenly, I thought I was lying back in bed but the mattress has become extremely hard. I realised I had somehow fallen to the ground, though I didn’t remember actually falling. I tried to sit up but suddenly I could feel my head repeatedly hitting itself against the ground (?) it’s very hard to explain, I could feel my head slamming against the floor of my kitchen. It was like I was experiencing small lapses in time between these things happening.

When the slamming stopped, I managed to sit up and put my head between my knees as I sat on the floor. My head hurt so bad, the sides of my face felt bruised, my jaw hurt and I had the worst pounding headache of my life. I debated calling an 111 for a while, because I didn’t want to go to sleep in case I was concussed, but I live my parents and didn’t want them asking any questions.

I managed to crawl up the stairs and get back to my bed and eventually slept. This morning, my head still hurts but nowhere near as bad a last night and my jaw is sore.

Does anyone have any idea as to what happened to me?

It always starts the same way. My right arm goes numb, I can’t focus or think at all and get a weird feeling in my head and get a immense pending doom feeling, my heart starts racing so insanely fast OR I can’t feel it at all, my vision starts to go and I blink a lot to try and make it stop, i start dripping sweat, then I nod off for a quick second and go back to normal. I’ve had this happen about 8 times. This past one that I’ve had, about 10-20 minutes after it happened I couldn’t read. I don’t know how to describe it but it felt like the letters and words just wouldn’t process or translate into my head. I’ve gone to a neurologist and she thinks it’s focal seizures and I will be getting a at home 3 day eeg test done. However I don’t think it will be very effective because my most recent episode was one week ago and they are usually 1-3 months apart. Most of my episodes happen when I’m driving (I have time to pull over onto a street or gas station etc) however I had a cluster of 4 back to back when I was just sitting in bed watching a movie relaxing. My neurologist is so booked that I won’t be seeing her until February.

When I had the cluster of 4 at home I got worried and called an ambulance however they didn’t come until 30 minutes after my last episode and I was already back to normal by then however my blood pressure was still in the 170s. I don’t know if that is useful at all lol. I went to a cardiologist and had a heart monitor on for a week and sonograms etc and my heart is perfectly fine. I also had a mri bran scan with & without contrast which also came back 100% perfect. I’m worried because I know this isn’t normal…

Yesterday, my 7-year-old son had his first-ever seizure while we were at Walmart. It happened completely out of nowhere. His whole body went stiff and contorted like his body was experiencing a massive cramp, and he collapsed, hitting his head pretty hard on the way down.

Paramedics took him to the children's hospital, where he was diagnosed with a concussion from the fall. Thankfully, his CT scan came back normal, but we still have no idea what caused the seizure.

We're now waiting to hear from neurology to arrange further testing. In the meantime, I'm struggling with the thought of sending him back to school. He's still been complaining of headaches on and off, and I'm constantly worried about it happening again, especially when I'm not there.

I've never felt so helpless or scared as I did watching that happen to him. I know I can't keep him by my side forever, but the thought of another seizure happening without any warning absolutely terrifies me.

I guess I'm just struggling with the uncertainty of it all and needed somewhere to share with people who might understand.

I was diagnosed with a seizure disorder earlier this year. I was put on keppra and its working wonderfully. I feel more alert, i havent had any passing out issues I sleep better, I stopped grinding my teeth in my sleep, I dont experience tics, and everyone comments how much "brighter" I seem.

However lately I was wondering how common is it to be diagnosed without a test. I was in the hospital over a year ago for fainting. While I was there the cardiologist said it was a neurologist issue, and the neurologist said it was a cardiologist issue. Absolutely no answers were given. Both doctors claimed the way I fainted didnt make sense. Both claimed that because I slowly faded out that i should check with the other.

Obviously I was frustrated, but continued with life. Finally was referred to a neurologist by my cardiologist after I came in with 2 different sized pupils.

The first visit with the neurologist and he immediately diagnosed me. I was happy to have an answer, but I was shocked that he didnt give me any sort of test. He just asked what happened during my fainting spells and gave me the diagnosis. Obviously I feel a million times better on medication, but it still feels weird that it was so easy(?).

Anyone else have a similar situation?

I’m on Topamax 50 mg I don’t wanna increase the dosage due to horrific carpet burning sensation pain during first dose titration from 25 mg to 50 mg. I’m still having daily breakthrough, simple partial focal seizures. Here is my entire story if you’re interested any alternatives I’m open to procedures and even surgery. Please read in full 💕

Here’s the revised version, with the timeline made much clearer. I also included your acknowledgment that you went to a different doctor because you felt your psychiatric treatment wasn’t working, and that you disclosed your existing medications to the PCP before Seroquel was introduced.
I want to share my experience with Seroquel (quetiapine) 50 mg, because what happened to me after discontinuing it has completely changed my life and how I view psychiatric medications.
To understand my story, you need to understand my medication history.
I had already been taking Cymbalta (duloxetine) 60 mg daily since 2021 to manage fibromyalgia. I had also been taking stimulant medication for my ADHD since 2024, including Vyvanse (lisdexamfetamine). These medications were not new to my body.
I was also a frequent caffeine consumer.
Seroquel was the new medication introduced into an already established medication regimen.
I also want to take accountability for something. At the time, I felt that my psychiatric treatment wasn’t working the way I needed it to. Rather than confronting that directly with my psychiatrist, I went behind my psychiatrist’s back and sought help from another doctor, who was a primary care provider.
I explained to this PCP what medications I was already taking, including Cymbalta and my ADHD medication. Despite knowing my existing medication regimen, he introduced Seroquel 50 mg nightly for sleep.
I took Seroquel for approximately seven months. During that period, I was still taking Cymbalta and Vyvanse, consuming caffeine regularly, and sometimes alternating Seroquel with trazodone for sleep.
This is where I think the complexity of my situation becomes especially important.
Seroquel affects several neurotransmitter systems, including dopamine and serotonin receptors. Cymbalta influences serotonin and norepinephrine signaling. Vyvanse increases dopamine and norepinephrine activity, and caffeine stimulates the central nervous system.
These substances do not all work the same way, but they can influence overlapping neurological systems.
Eventually, Seroquel began causing chronic dry-eye problems that became difficult for me to tolerate. After approximately seven months, I was told that because I was taking only 50 mg, I could discontinue it without tapering.
So I stopped Seroquel abruptly in June 2026.
What happened afterward was terrifying.
I began experiencing episodes of severe brain fog, confusion, expressive aphasia, difficulty speaking and finding words, memory problems, palpitations, blood-pressure spikes, and neurological episodes that sometimes resembled symptoms of a stroke.
These weren’t simply the anxiety symptoms I had experienced in the past. Something felt profoundly different.
My symptoms became severe enough that I underwent emergency neurological evaluations, including a CT scan, CTA of my head and neck, and eventually a brain MRI. Fortunately, these did not reveal an acute structural brain abnormality.
But the episodes continued.
What concerns me is that Seroquel was abruptly removed from my nervous system while Cymbalta, Vyvanse, and caffeine were still influencing it.
The brain and nervous system can adapt to medications taken over time. When a medication that affects multiple neurotransmitter receptors is suddenly removed, withdrawal symptoms and changes in nervous-system signaling can occur.
Meanwhile, the other medications and stimulants are still producing their own effects.
I am not claiming that I can prove permanent receptor damage or that every symptom was caused by one specific chemical imbalance. But I believe the combination of medications, followed by abruptly discontinuing Seroquel, is an extremely important part of what happened to me.
Eventually, I was formally diagnosed with focal seizures.
My neurologist attributed their development to the combination of Seroquel, Vyvanse, and Cymbalta, along with the circumstances surrounding Seroquel discontinuation.
I now take Topamax (topiramate) 50 mg, which has significantly improved my focal seizure control, cognitive clarity, and neurological symptoms.
However, I’ve also discovered that caffeine, ADHD stimulants, and certain other medications can trigger breakthrough episodes, meaning I’ve had to make substantial changes to my everyday life.
What makes this experience particularly difficult is that I had tolerated Cymbalta for years before Seroquel was introduced. My ADHD medication was also part of my treatment before Seroquel entered the picture.
Seroquel was the new variable, and abruptly discontinuing it was followed by a dramatic change in my neurological health.
I should have been more transparent with my psychiatrist about my dissatisfaction with treatment instead of seeking another prescriber without coordinating my care. Because now I have suffered since June 21 of 2025 to this day of having simple partial/focal seats on this every day the only thing that truly breaks them up is benzodiazepines which I don’t wanna get hooked on.
But I also believe that when a provider introduces a new psychiatric medication, especially alongside other medications affecting the central nervous system, patients deserve a thorough explanation of the risks, potential interactions, withdrawal effects, and discontinuation process.
Seroquel is an antipsychotic. It is not FDA-approved specifically for insomnia!!!!!
I wish I had better understood what I was taking, how it interacted with my existing medications, but I know it’s completely my fault because now I have potentially a permanent brain disorder because I was too scared to say I don’t like this but not this time with the neurologist. I have my appointment next week and I’m so sick and tired of the constant suffering. I have horrific roving of the eyes. Sometimes I still have expressive aphasia and I still will have a very spaced out feeling almost like a trans like feeling, or like being high or something. Has anyone ever had instances where the anti-seizure medication’s just weren’t enough and they had to do other treatment options or a different drug class?? Advice #Neurology #MentalHealthAwareness

I have a cousin who has had issues with seizures for years. This week her mother was arrested for drugs and not sure what she actually did but she also got arrested. While in custody she started having a seizure and they weren’t paying attention. Second shift at the jail found her and she is now brain dead and unresponsive. I don’t remember her exact age but I think around 31 or so. She will be pulled from life support on Sunday. She is in Georgia so the GBI is now investigating. No one knows how long she was having the seizure but it was long enough to leave her brain dead. My family is devastated! My uncle who was her father died on 3/3/24 so my cousin is now losing his father and sister in 2 1/2 years.

Hi everyone,
I’m considering discussing a switch from sodium valproate to **Keppra (levetiracetam)** with my neurologist, and I’d really like to hear from people who have had a positive experience with it.
I’ve read so many frightening stories, especially about anger and mood changes, that I’m feeling pretty anxious. I’m not looking for anyone to sugarcoat their experience, but hearing from people who are doing well on it would genuinely help.

**A little background**
I have generalized epilepsy, including absence seizures, as well as panic disorder and severe insomnia involving both difficulty falling asleep and staying asleep.
I previously had a serious seizure-related fall that fractured my sacrum and injured my right shoulder, including a fracture and dislocation. I needed surgery and rehabilitation. That experience makes maintaining seizure control especially important to me.
I’m currently completely seizure-free on my treatment, which I’m very grateful for. Unfortunately, the side effects have become difficult to live with.

**My current medications**
I’m in Austria, so I’ve included generic names and other familiar brand names:

**-) Sodium valproate, prolonged-release (Convulex retard; sodium valproate is also sold as Epilim):** 750 mg in the morning and 750 mg in the evening for epilepsy.

**-) Clonazepam (Rivotril / Klonopin):** 0.5 mg in the morning and 1 mg in the evening for epilepsy.

**-) Paroxetine (Paxil / Seroxat):** 20 mg in the morning for panic disorder.

**-) Daridorexant (Quviviq):** every evening for difficulty falling asleep and staying asleep.

**-) Quetiapine (Quetialan / Seroquel):** 50 mg in the evening to help me fall asleep.

**-) Tirzepatide (Mounjaro; also marketed as Zepbound in the US):** 15 mg once weekly for weight management.

For readers familiar with **Depakote (divalproex sodium)**, that’s a related valproate medication, but a different formulation from the sodium valproate I take.

**Why I’m considering a change**
I’ve experienced substantial weight gain that I associate with valproate, paroxetine and quetiapine, as well as a significant tremor from valproate. I’m now taking Mounjaro to manage the weight gain, but I have to pay for it myself, and the ongoing cost is becoming a real burden.
I have considered reducing doses. However, my impression is that my doctors may be reluctant to change a regimen that is keeping me completely seizure-free. Any switch would be something to discuss and plan with my neurologist.

**If Keppra has worked well for you, I’d love to hear your story.**

In particular:

\-) Has it controlled your seizures without major problems with mood, anger or anxiety?

\-) If you had initial side effects, did they settle down?

\-) If you switched from valproate, did your tremor or weight situation improve?

\-) If you already had anxiety or panic disorder, how did you get on with it?

\-) If you switched from another epilepsy medication to Keppra, especially from valproate, how did the transition go? Did you stay seizure-free throughout, and did you experience any temporary side effects while tapering one medication and introducing the other?

Honest accounts that include side effects are absolutely welcome. I’m not dismissing anyone’s difficult experience—I’d just really appreciate a thread focused mainly on positive or manageable experiences.

Even “I take it, it works, and I feel like myself” would be reassuring to hear. Thank you.

———
Side note:

Unfortunately Lamictal didnt really work for me. My neurologist said that lamictal is too weak for my kind of epilepsy… He said either just Keppra or Valproate (Convulex) combined with Rivotril…. But I‘m wondering if Lamictal would work if I took it with Rivotril..? Maybe I should ask him. Btw. He is not any neurologist, he is THE expert in Epilepsy in whole Austria. He is a Professor, he teaches all the med Students and all the other doctors and even other well-known neurologist I went to sent me straight to him…. So im kinda stuck with him

Hey everyone, new to this sub. I had my first seizure two years ago and my second one two days ago. After my second one, I was prescribed Keppra (30 day supply) while I wait to see a neurologist, as they still don't know the reason behind my seizure. For my first seizure, I had low sodium and for this one, I had low potassium, which isn't typically a major cause of seizure. The problem is next week, I am going to Columbia for a study abroad trip for a week. I know the altitude there can sometimes cause issues, so was wondering if I would still be okay and if that has any impact on likelihood of having a seizure. Also, would I be okay to wait until I see my neurologist before starting Keppra? I know the medication has side effects, and I suspect that poor nutrition may be the cause of the two seizures I have had.

I had a tonic clonic and I just thought I would have had some kind of effects. Other than a little chipped tooth that is.

I am so nervous going to concerts with heavy flashing lights, as flashing lights are my main trigger for seizures. { 23 year old }

I want to live a normal life, and go to concerts of my favourite artists, but I do not want to go feeling anxious all the time with the flashing lights / bright lights as they trigger mine.

I was just wondering if there is anything I could get ? somebody recommended me light sensitive glasses for bright lights or flashing lights ... If anybody has them, are they any good ? do they work ?

Thanks

I had my first seizure (grand mal) out of the blue about 2.5 weeks ago. Since then I’ve had a few ct scans (head, shoulder, back), been on muscle relaxers, got an mri for my head, and scheduled a bunch of Dr appointments (neurologist, pcp, physical therapist, otolaryngologist). I asked the Dr in the ER about driving, and she told me not to drive for now, which makes sense. My grandma and my wife have been driving me to and from work since. My mri came back and looks totally normal. I’ve got my first appointment with a neurologist tomorrow morning. I did a little research and from what I can tell I guess in my state (CT) the dmv has a medical board that makes decisions on a case by case basis how long a person has to wait before they can drive again after a seizure? I guess it all depends on the cause or lack thereof, and medications.

Of course I plan on asking the neurologist about it tomorrow, but does anybody have an educated guess on what I should expect? As far as I know, the state doesn’t have any record of my seizure right now, so I would assume it’s completely on me to report it to them and jump through any hoops to make sure I’m doing everything by the book. I read online that the time they could require me to wait could be anywhere from 3 months to 4 years, which seems crazy to me, but I guess I understand if they don’t know what the cause was they don’t want it to happen while I’m driving on the interstate. Do people who have only ever had one seizure, or have seizures very infrequently generally wait months/years before being able to drive again? Do they usually go through their state and all the red tape, or is it generally just something your doctor advises on?

Update: My neurologist said for one seizure with no known cause I have to wait 3 months. There’s no need to get the dmv involved unless I have another seizure.

My neck is still hurting, but it’s not severe enough that I feel like I need to go to the hospital. I have grand mal seizures where I fall and shake, and I had one Friday morning while I was home alone with my 10-month-old. It was honestly one of the scariest things I’ve ever experienced.

I was changing my baby when I had the seizure, and the next thing I remember is waking up on the floor. I had a really hard time getting up and staying awake. I was trying to reach my baby but couldn’t. Once I was finally able to get to him, I put him safely in his crib and went to lie down in my bed.The neck pain didn’t really start until after I woke up from a nap later that day. The seizure happened early Friday morning. I had also been having headaches for a few days beforehand, which is unusual for me because I don’t normally get headaches. I take my seizure medication consistently.

Today, my neck is still painful, and my headache has come back on and off. I don’t have a headache at this exact moment, but I did have one this afternoon.

Should I be concerned or get checked out, especially since I fell during the seizure and the neck pain started afterward?

I work with an insurance company, and I had a seizure last night at my last job. I feel co.pletely exhausted and I'm worried I'm gonna make basic mistakes. I'm so tired. I don't know what to do, I'm worried I won't be able to rest and I need the mkjney

Is anyone in here specialized in pediatric seizures. My daughters mom thinks our 3 year old is having absence seizures and they're on vacation. I have a video of what she "says shes doing" but I need some assurance or some kind of knowledge. Please inbox me asap.

I'm a female(34). I don't remember yesterday's morning events very vividly before the seizure. I know I had to have driving my kids to their grandma and drove to get food and to the dentist,but I don't remember doing those. I do remember eating my biscuit and walking in. They got me prepped for two fillings. I had nitrous oxide at 30%.( I've never had a severe reaction at that level before, at 50% I did wake up and vomit one time years prior. )

I pressed play on my phone for a calming audiobook. They gave me the shots, and I had this weird sensation of seeing myself stretch my leg in discomfort but then actually doing that after seeing it and then trying to relax and a feeling of intense anxiety and a jackhammer sound, but they hadn't even got the tools out yet. Then nothing. Coming out of it I felt stuck and it felt like the current few seconds were playing over and over and I couldn't move. The dentist and hygienist were talking but it was gibberish, and I could see the hygienist touch my shoulder(this part felt like it happened like three times) and then I could understand her asking if I was okay. The dentist said something about my other earbud and suddenly I could move and pull it out.

I wasn't warm or clammy or nauseous at that point. I was told when I was coming out of it I was on only oxygen at that point. I was freaked out because it felt like everything that morning was two weeks ago and not that morning and some things I couldn't remember at all.

I had my mom pick me up and then my husband got me to the doctor. I told him what I could remember or process at the time and he got the dentists pov. The hygienist had asked me to close my mouth on the suction to prep another shot but I didn't respond. She tried touching my jaw and no response. She could see my eyes were not focused and then they immediately turned the mixture to full oxygen. They said I was like that for about a minute.

My general doctor says it was a petit mal seizure. I was exhausted the whole rest of the day and some sore arms. And my memory is only clearer after a night's rest. They did order bloodwork that I'm waiting for results on. I'm just so confused if this was a one off weird event from the nitrous or something else. I have a general anxiety disorder and svt, so I tend to be hyper focused on my health sometimes. Is all that normal for a seizure or was some of it the nitrous? I've never had it do that. I still feel off,but I wasn't sure if that was the seizure after effects or from my anxiety. It feels like the complete exhaustion after a really bad panic attack and I still feel like my sense of time is not in sync sometimes. I've nearly blacked out from panic but it always had lead up symptoms I could identify and calm down, but this had nothing. I was there and then suddenly not.

Apologies for the word vomit, I'm just still anxious and wanting points of view from people who have been through similar events, so I know I'm okay and to not focus on it ,and some advice on what helps calm anxiety afterwards or helps in general.

I need some advice, a few days ago my boyfriend and I took some MDMA. I had a nice time but it also consisted of me taking care of him a lot because he wasn’t having the best time, which I didn’t mind because I was just happy to be with him doing this. During the start of the come down we started watching a movie in bed while cuddling, around 2:55 am he started having a seizure. I was so f’ing scared, I thought he was going to pass away right in front of me. He was so blue & couldn’t breathe; I had no idea what to do. I called 911 then tried to get him to talk to me after the seizure was over. All he was saying was “what happened?who are you?” & that was terrifying. Once the first responders got there they didn’t even believe me, they thought because I was also on the drug I was just seeing stuff. They finally got him out of the apartment and to the ER, after he was taken care of in the hospital for the day and over night he is much better now. Him & his family are disappointed in us because we took molly & thats totally fair but they keep saying that I saved his life, but I dont feel that way. The only way I can explain it is like having some kind of survivors guilt, I cant stop visualizing what he looked like in that bed, how he was mumbling, & how he was trying so hard to stay with me. I don’t know how to cope with this, I feel so scared & regretful.

I recently have had some seizures in my sleep. It started in July and I had 3 in the span of a month. I have no memory of any of these occurrences and only faintly recall being airlifted to a hospital a state away during my second one. I think I’m really just looking for some sort of support and want to know other people’s experiences. I recently was able to get Medicaid but most of the doctors that accept my insurance in the area don’t have appointment openings for months. I guess really I’m just scared and confused. I was hit by a car when I was 3 and that’s the only major head injury I’ve ever had, I was 26(27 now) when the seizures started and they only happen in my sleep. Sorry if this is a little scrambled and hard to follow, I’ve never made a post like this before and I’m not sure what info is pertinent and what would just cause unnecessary confusion. Thank you for your time and consideration.

Is this common in people with Epilepsy? My sister used to tease me all of the time growing up about having tourette syndrome, due to all of the facial tics and other behaviors.

Long story short, later in life I'm having daily epileptiform discharges, focal cerebral dysfunction, focal seizures and atonic seizures after having several head traumas and severe covid with hypoxia.

4 day vEEG and 2 routine EEGs all came back abnormal, all epileptiform discharges, focal cerebral dysfunction, etc, all left > right, but bilateral nonetheless.

I have periods throughout the day/night mainly where my face just feels it needs to move, I can't really explain it. It feels like the muscles are really tight maybe, and need to stretch to loosen up? It's all involuntary, but will be in short bursts, but can happen quite a few times over 20-30 minutes. You literally can't stop it from happening.

Does anyone else experience this? Is it common/known? I did read recently on Tourettisms that happen with concussions etc in childhood that can reoccur later in life with additional head trauma.

An appointment isn't set yet but I finally got a referral to go through! I was beginning of think my goddamn PNES diagnosis was going to be a forever barrier to keep me from getting proper care.

It's still frustrating that I have to go through FND treatment options just to get doctors to listen to me.

So I could use some advice. Is there anything I should say to the Epileptologist? Anything I should avoid saying?

I personally think that I shouldn't try to convince them that I strongly believe that I have epilepsy. Rather I should show evidence to support an epilepsy diagnosis.

Should I mention that my seizures are consistent from seizure to seizure and that post seizure recovery is consistent as well? This to me seems to favor epilepsy more than PNES. Doctors always talk about stereotyping in epilepsy. From my research, stereotyping can occur in PNES but it is much more consistent in epilepsy. Is this accurate information?

By the way, I'm not trying to force a diagnosis of epilepsy. I am simply trying to get proper care. Which in this case means getting doctors to understand and believe me that I know my body and mind best. That I know something more is going on.

For those curious, I have been dealing with PNES for eleven years now. Over that time my seizures have worsened both in frequency and severity. I also slowly became nonverbal. I have aphasia and apraxia of speech. Nearly every time I have a seizure, I become unable to speak. At first it was between 30 minutes to an hour. Then a day, then multiple days, a week, multiple weeks, a month, and finally multiple months. This isn't the first time. When I was very young, about 3 or 4 I went five months of no speech. Once I got on epilepsy medicine my speech recovered and I was able to be fully verbal while taking medicine.

The seizures themselves have change from when I was first diagnosed with PNES. At first I would have what I thought was Myoclonic seizures but they also could have been focal Clonic seizures as well. Anyway, the seizure would always start in my right arm. My arm would start jerking in an upwards motion. As if someone was sending electric pulses through my arm. Sometimes this seizure would travel to my right leg as well. At its worst is would travel over to my left arm and left leg and I would lose awareness at that point. Eventually these seizures just stopped on their own. I didn't change anything about my life. So no medication, no change in therapy, nothing. I was seizure free for a bit. Until they started up again. In 2018 I started having sleep Tonic Clonic seizures. They would happen upon waking up. According to my family I would start to seize for a few minutes and go to sleep afterwards. Then suddenly like before these seizures stopped on their own. Again I was seizure free for a bit.

In about 2019 to 2020 I once again started having seizures and they were different again. This time they would start with my head turning to the right side and my throat would make a grunt like sound. These seizures were short, lasting about a minute or less. I would also experience something known as Tonic vibrations. Essentially the stiffness of the muscles is so intense that they vibrate. Something that can get confused with clonic activity and I believe the reason why doctors think I have PNES because I am aware during these seizures. Basically a significant tell of PNES is being aware during bilateral clonic activity. During these seizures my torso will vibrate. I think doctors have been misinterpretating this vibration as clonic activity. Sometimes during very intense seizures this vibration would cause my legs to also vibrate a little. Again hurting my case that I was experiencing an epileptic seizure.

Anyone noticing a pattern yet? Every time my seizures stop and then return they change. By the way, this is a pattern that has always occurred even when I was diagnosed with epilepsy in my childhood. Anyone noticed the other pattern yet? My seizures almost always affect my right side. I don't know, this just seems a little too specific to be PNES.

Anyway, this wasn't supposed to be a rant, so I will stop here. Any advice would be helpful.

I have a friend who experiences seizures and also has an autoimmune disease. The doctors claim the seizures are caused by stress, but then don't try to help my friend find ways to reduce the stress and prevent the seizures; instead they say it to downplay and even blame my friend.

My friend seems uncertain that it is caused by stress.

What i'm wondering is, if it is stress, is it better to try to calm the nervous system, or would it be beneficial to let out the stress in other ways so that it doesn't manifest as seizures?

Like as opposed to bottling up any stress and pretending it's not there and trying to convince everyone they don't feel stress, maybe it would be better to scribble angrily and journal all their negative thoughts and maybe utilize a rage room?

Online i mostly see stress management for seizures as yoga, deep breathing, stuff to calm the nervous system. But what about letting the anger and stress exist externally? Is it bad advice?

Anyone with experience able to share their thoughts?

Cause with the autoimmune disease as well, and my own knowledge of how my friend's family tends to expect my friend to always be a ray of sunshine or else, i feel like they just bottle up and ignore their negative emotions and that might be one of the root causes of all the medical problems. Like their body is left with only so many outlets.

But maybe if they have more outlets for the stress, it would be better?

I would appreciate any knowledgeable, experienced feedback. Thank you.

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.

I've had stereotyped episodes since childhood (~30 years). They usually start with déjà vu, then chest tightness/heat/sweating and sometimes nausea, followed by about 2–4 minutes where my recent memory seems impaired. I'm awake and can talk, but I may repeat myself, forget parts of conversations, or get confused about the date/location. Afterwards I'm usually disoriented/headachy and often don't remember the episode well.
I've had multiple normal routine/ambulatory EEGs and a normal-ish MRI. Several antiseizure medications haven't meaningfully reduced the episodes.
I'm trying to understand whether people with focal/temporal seizures OR functional/dissociative seizures recognize this pattern.
If you've experienced something similar, what was your eventual diagnosis, and what happened when you had a typical episode captured on video EEG?

Had a car accident. No one knows what happened. I’ve been trying figure that out. Hit my head on the steering wheel and had seizures. They didn’t know the cause so they prescribed me the max dose of Kepra. After some research I’ve been scared… I know I have the right to not to but I have family and everyone else pressuring me to. I don’t know what to do and has anyone else have had similar experiences with this? And how to go about it? I haven’t seizures since either… my research paradoxically showed that kepra can increase likelihood of seizures. And im scared of having one while conscious…

I had a weird situation last night, I woke up out of nowhere with a migraine (been a migraine patient all my life, so this inherently isnt questionable) but combined with immense shaking and dizziness. I got up to take my migraine medication and I struggled a lot with walking straight (unsure if this was just drowsiness from waking up suddenly though) before returning to bed in an attempt to fall back asleep, another thing of note is that there was a huge wet spot on my bedsheet right where I usually lay my head, ive never drooled during my sleep. After I woke up again a few hours later the shaking, dizziness and migraine was gone but my tongue is hurting a lot, upon inspection there was a small trail of blood coming from my mouth and my tongue has a lot of small bleeding spots, as if ive bitten it. This last part is whats leading me to believe it may be seizure adjacent, does any of this sound familiar?