Does anybody else take these? Just been given them and want to make sure they are okay. Very, very new to this world, not even sure if I'm epileptic or not currently. So completely confusing! But I just want to make sure these tablets are okay because I have seen talk of dodgy tablets on Reddit quite often. Thank you to anyone who responds.

My story is really complicated. In June 2016 I was in a serious car accident and lost half my skull. I was placed in an induced coma, 1 week later they tried waking me and when they did I had my first ever seizure. I was then put back in a coma for another 3 weeks. Then I had my second one in July 2017 2 days after they put my titanium plate in. So I've spent the last few years thinking I was completely fine (with seizures, obviously having lost half my skull it wasn't a general fine haha). Then I completely randomly had my 3rd seizure a few days before the Christmas just gone. I am not asking for any medical advice I've seen people get really shitty over that. I have heard you can get a bracelet that can detect a seizure and it alerts somebody for you. Is this actually a thing? And if it is could I be told where to get one please? This last seizure has me petrified because the first 2 my mind could put a reason behind it, loosing the skull, then the plate, this one nothing serious had happened for my mind to blame it on so I'm terrified I will have another one. I have got an appointment at the hospital this coming Monday so definitely not asking for medical advice, just about the bracelets please.

I have a 4 channel EEG which I took a recording of during a seizure. I'm hoping someone who can read EEG can look at it for me.

With my very limited knowledge I believe I can see obvious changes. If you can have a look I am happy to send you the file and I also have a video taken at the same time.

Thanks.

Can anyone tell me whether smoking green make seizures more likely please?

Okay so on the 13th June 2016 I was in a serious car accident. They flew me to Addenbrooks (in the air ambulance) and cut half my skull out my head because most of it had apparently been shattered, I was then placed in an induced coma. After a week in the coma they tried to wake me up, and that's when I had my first seizure (0 memory of this one, just telling what I was told), then they put me back into the coma for another 3 weeks 🙃. Then my second one was the day after I got my titanium plate. But this one I have FULL memory of... I was sitting in the arm chair while my sister was sitting on the sofa, when I started having the seizure I made a couple of strange noises, which made my sister look at me and realise what was going on. I remember sitting there, and all I wanted to do was say 'it's okay honestly I'm alright', but obviously being in the middle of a seizure I couldn't lol. But it's my third one that is really, really worrying me 😕 It happened last night, but there is literally 0 reasoning behind this seizure. The first one and second one I understood, people were messing about right near my brain so my body freaked out a bit. But this third one, there is no reasoning for it that I can see. I'm petrified that this is going to be my life now. And trust me my life was already rough enough. When I lost half my skull I also lost every friend I had and my driving licence. Oh and also I was a size 6 when the car accident happened and by 10 months later I was a size 22 🙃 So I suppose I want to know whether this is now gunna be a regular thing for me? I will be extremely grateful to anyone who can give me any advice!

Hello. There's a few things I'm very curious about with regards to frontal lobe epilepsy. As I understand, frontal lobe seizures are very often clustered and nocturnal, occurring in the early morning hours. Is it fully understood why this is? I have looked at this paper examining the relationship between sleep and epilepsy, and epileptiform discharges that occur during different sleep stages. It does mention that many folks with generalized tonic-clonic seizures have a nocturnal predominance. However, I don't understand why focal seizures arising from the fronal lobe are also so often nocturnal (in comparison to focal seizures in the temporal lobe for example, which, I thought were more often during the day time.) Maybe I'm wrong about temporal lobe seizures happening during the day; are they more often nocturnal in nature as well?

If you have insight here, or research studies speculating why this is, I'd be very interested.

Also curious, for folks whose frontal lobe seizures are mostly nocturnal, does it ever really deviate from this? For example, could they suddenly have clusters of seizures during the day?

Thanks in advance for any information.

So an article came out today saying that genetic testing has now become so advanced that if a child was having seizures or showing signs that they could be. they can now identify the genetic cause before the damage gets any worse. The latest is there are something like 800 genetics related to epilepsy. Has seen the official medical release on this? What does it exactly mean? Sorry, I posted this very quickly so I don't have the official release yet.

Update:

Rapid genome sequencing highly effective at diagnosing babies with epilepsy - Murdoch Children's Research Institute (mcri.edu.au)

Everyone I finally found a better article that explains what this whole thing is about.

Has anyone seen this? Daughter has TLE, focal seizures that can sometimes generalise. Periodically wakes in the night with severe night sweats, which appear to start at her legs and work their way up. No movement evident during these events. May relate to menstrual cycle.

I thought this podcast could be of interest to this group. You can listen to it on Apple, Spotify and other major podcast platforms.

Podcast is made by me, Liz Tucker, I am an award winning journalist and former BBC producer. You can find out more about my credentials at: What Your GP Doesn't Tell You Website

Hope you find it interesting!
Many thanks

(checked with mods before posting.)

Hi there,

I’m considering epilepsy as a fellowship and one of my considerations is the work schedule at night. Do folks here have some insight into what it looks like across different hospitals?

Thanks!

I hope the question is allowed, as it's incredibly basic. We know so much about epilepsy, and about so many different types of seizures. Why is it that there is no cure? What are the barriers to finding a cure? What is it that makes epilepsy so difficult to treat? There are medications, but they come with lots of side effects, and don't work for everyone.

1. Psychiatric and Behavioral Aspects of Epilepsy: Current Perspectives and Mechanisms by Nigel C. Jones, Andre M. Kanner.

This book collected recent knowledge and findings as well as controversies in our current understanding of behavioral and psychiatric comorbidities of epilepsy.

ISBN: 9783031032356

2. Inflammation and Epilepsy: New Vistas by Damir Janigro, Astid Nehlig, Nicola Marchi

It provides information the basic mechanisms, clinical features and therapeutic approaches to epilepsy as an inflammatory disease.

ISBN: 9783030674038

3. Continuum Lifelong Learning in Neurology (Epilepsy) April 2022

It provides the highest quality in-depth information on topics in neurology.

ISSN: 1080-2371 / 1538 - 6899

4. Epilepsy in Special Population: Clinical Pears by Rajiv Anand, Deepak Arjundas

It collates key evidence for managing epilepsy in daily practice, in various practical scenarios in children, elderly, adolescents, in women, in patients with comorbid HIV or post-trauma, or managing status epilepticus.

ISBN: 9789354655265

5. Wyllie's Treatment of Epilepsy: Principles and Practice, 7th Edition by Elaine Wyllie MD

It provides a detailed and cohesive overview of seizure disorders and treatment options through six well-regarded editions.

ISBN: 9781496397713

​

I created a subreddit with medical books, if you need some books, you are welcome to ask about it r/medicalbookrequest

Are there any resources of videos of the different seizure activity types and how they look like: e.g. myoclonic vs clonic vs tonic vs tonic-clonic?

Or any good basic resources on how to clinically describe a seizure? The ILAE 2017 seizure classification is good but very text-descriptive but I think videos would help me understand better.

Hello, I'm interested in how you tell the difference between SHE and things like parasomnias especially when EEGs are often normal in SHE?

To clarify my question: I am wondering why generalized tonic clonic seizures almost always appear in the tonic, then clonic phase. And these tonic and clonic phases look the same in most patients.
Why does the brain manifest these seizures like this? From my understanding, a seizure may start with an aura (focal seizure, which can present as many different symptoms) and then spread across the brain into something that typically looks like that.

Is this a concept that is scientifically understood? Is the brain formed in a way that when neurons behave abnormally in this certain pattern, it always manifests this way? Why is that?

I suppose this question can be applied to any other seizure that is generalized and tends to look the same from person to person. Like absence seizures, and of course the separate tonic and clonic seizures.

I hope I made my question clear enough. I would love links to any articles/papers written about this if they are available.

Hello,

I've been struggling with my diagnosis for a while. In the past I was diagnosed with PNES, imitating simple partial seizure-like episodes (description below).

I completed a two year CBT and the frequency of my seizures went down considerably (4-5 a month to 1 seizure every 2-3 months). This suggests stress is at least a trigger and possibly psychogenic.

3 months ago I had my second tonic-clonic seizures in 3 years. This was atypical. A video shows post-ictal confusion, eyes open initially then closed during seizure. I looked like I was drunk, sleeping on my back with my eyes closed. Every time my wife called my name, I would open my eyes and go back to sleep. This happened during a very stressful part of my life (family tension, employment worries, seizures concerns). Blood tests showed elevated creatine kinase levels post seizure.

Thus far numerous tests (EEG, MRI, lumbar) have not shown any causes for the seizures nor has there been any evidence for seizure activity. I was put on 100mg lamotrigine. No seizures in 3 months but auras that don't lead to the below described seizures (not unusual for me). Lamotrigine is known to help with bi-polar disorders, maybe that's helping my PNES?

So now I suppose the diagnosis is epilepsy, or maybe both PNES and epilepsy? Or maybe PNES was the wrong diagnosis?

The question is, if there is no evidence for epilepsy, how do we differentiate epilepsy from PNES in this case? If there is no evidence for epilepsy besides the clinical observation, how do we know the diagnosis is correct? Is it simply a case of "Yep, meds work, so who cares about the cause?" Or are the meds working for the seizures because there is possibly a psychogenic component to it? Or are the meds working as a placebo?

Description/Background

- major depressive period as a teenager

- seizures occur at night, often same day of week, time of night

- usually happen before sleep or shortly after (within 1st hour of sleep)

- awoken from sleep by feeling of dread, pressure behind left eye, tingling left side of face

- closed eyes

- no post-ictal confusion or limitations in focal seizures

- chronic unilateral pressure in neck, jaw and eye. Parasthesia at times.

- previous meds: 1000mg Keppra (worsening anxiety, anger, no change in seizures), Lyrica (unknown dose, major headaches), Oxcarbamarzipine (hypersensitivity skin), 100mg Lamotrigine (seems to be working), indomethacin (original assumption was cluster headache, no change in seizures), fluorextin (no change in seizures, high anxiety)

The seizures be best described as

"I have been having these events where I wake up in bed and I feel like something is about to happen that I can't escape, dread. Shortly afterwards I feel the need to squint my left eye and jaw and my left arm shakes uncontrollably, erratically. This lasts for about a minute and it feels like a vein is about to pop in my left temple or behind my left eye. Then it calms down and I feel a release and calmness, relief."

Comment: I seen many specialists in the field and it's be a back and forth. I'm very much hoping lamotigrine will help. But I'm also very curious to know more about this and what the cause is. I don't feel I'm getting the answers I'm looking forward currently.

Many years ago I used to smell an oncoming seizure- details in the comments.

So I think I have Eating Epilepsy. I think that is how one would what is happening maybe? I've contacted my neurologist about this. My absence seizures came back some months ago and my parents and I were talking about how they usually notice my absence seizures etc during and after meals.

Does one get monitored with an EEG to prove the correlation of eating and the patient? And anything else you know about EE?

Hey, not looking for medical advice, just information on what to look for with BRE. The gist of my post is just to ask, what kind of symptoms/ signs would I see of seizures in my 7 year old son with BRE? Common and less common signs, easier to not notice/ overlook signs, whatever. He was diagnosed in November, and I've just realized I've been looking for all the wrong signs for the types of seizures children with BRE experience, and I'd like to remedy that. How can we know if he's seizure free if I don't even know what BRE seizures actually look like?

I'm certainly no helicopter mom, I'm also not gonna Google fu my way to answers instead of asking professionals, I'm not gonna rely solely on answers on reddit even from professionals here, but some info is better than none. First thing next week, I'll be asking his pediatrician to refer us to an epileptologist, so again, I'm not skipping the very important step of actually having a specialist see my son, me talking to them, etc. Just don't know how long it will take with referral, insurance, and getting in to see the epileptologist for the first time.

Please feel free to ask any questions that you may have, even if it's just for shits and giggles, or background info, treatment info up till now, or anything else. I'm an open book.

Hi everyone. I’m an epileptologist and i have a patient I’ve diagnosed with non epileptic events based on two independent long term video eegs capturing her typical events that actually brought this up to me. I had not heard of it before, so I did some digging and I found this article:

Predicting psychogenic non-epileptic seizures from serum levels of neuropeptide Y and adrenocorticotropic hormone Alessandro Miani et al. Acta Neuropsychiatr. 2019 Jun.

The TL;DR version is that in those patients that don’t have convulsive events during EMU admission, these two hormones being elevated predicted NEEs with over 90% accuracy. Color me surprised. I’m wondering if anybody uses this routinely when they admit to the EMU?

I'd like to know first of all is autoimmune epilepsy a well known type in other countries , as it isn't here in Ireland. Secondly what are your thoughts on the small amount of ways to diagnose it. As how it went about being diagnosed and is currently being treated for me I find quite frankly terrible. From discussing it with the consultant treating me, as well as family members who are in the medical profession and know who to ask, autoimmune epilepsy does not seem to have many types of medication to try if what your put on first does not work. Is the limited number of medication that can be tried an all round thing, has nothing better been discovered yet or is it to do with country and money ? Finally I would like to know if any who has been treated for this type of epilepsy, have their seizure been brought fully under control by medication so they are seizure free ?

What happens to a healthy brain,with no epilepsy when you give it medicine to stop epileptic seizures? Especially in young children

I also asked this question in r/neurology, but figured someone here may be able to help, too.

I'm writing a story with a character with epilepsy. I'm not a medical professional of any sort, but have been interested in neurology for many years and have enough knowledge of terminology, etc, that I primarily read resources written for medical professionals in my research. (This isn't to brag, simply to give background of my approximate level of understanding.)

I came across something years ago (I don't remember where) that stated there is invariably a period of unconsciousness no shorter than 5 (or 10, don't remember which) minutes following a GTC seizure.

However, in other things since then I've seen since then, there are people who are apparently conscious (voluntary eye opening and movement, sometimes speaking) within a minute or 2 of the seizure ending.

Is the statement incorrect? Is there an expected lower limit on the duration of unconsciousness after a tonic-clonic seizure?

Also, in some, it seemed like a sudden awakening rather than a gradual return to normal level of consciousness, as I was under the impression it would be like. Is this common/uncommon, or does it simply vary?

Finally, what is the "expected" or "typical" progression and timeline of postictal symptoms after a GTCS?

I’ll be beginning my dissertation next year, a case study of a little boy with Dravet Syndrome. I’ll be primarily studying his family’s lived experience and hopefully some information will be useful to other families of kids with severe epilepsy. I’m starting to search for an External Reader, who must be a PhD or MD not affiliated with my university (Fielding Graduate University). If anyone is interested, please pm me for more details. This is a paid position!

I am a 25 year old who has been having issues with seizures. After 8 years of going seizure free in 2017 I began to have seizures again. In 2009 I was diagnosed generalized seizures and February 2019 I was diagnosed with left frontal lobe epilepsy. I have seizures in my sleep mainly and have been struggling with Partial seizures since March. I mainly have them in my sleep but do have them at times of sleepiness. Medications: Lamotrigine: 100mg 2x daily Oxcarbezapine: 450mg 2x daily Lacosamide/vimpat: 100mg 2x daily Clobazam: 15mg at night I'm taking Mirvala as birth control (28day pack).. about a week and a half into a package I tend to be higher risk for seizures for up to a week (usually 3-4 days) which I was told by my neurologist that it was my ovulating time and that I probably have too much progesterone.

My GP doesn't want to prescribe me an IUD without knowing if I need the hormonal one or non-hormonal one. I am wondering which IUD would be best.

Side note: they found where the seizures are originating on a PET Scan and I am waiting for a referral to a neuroscienctest and they are looking to see if surgery is an option.

Has anyone ever noticed a tic on Keppra or Depakote? Since my daughter started Keppra, she’s been scratching her scalp and sniffing her finger (hundreds of times a day). She is also pulling her hair out. I thought it was a side effect of Keppra but we’re in the process of weaning her off while adding Depakote at the same time. The first few days after we reduced the Keppra and added the 750 mg of Depakote she was okay. She’d pull or scratch very rarely but she’s been on Depakote for a week now and it’s coming back with the same intensity as when she was on the Keppra. We went to her therapist and they think it could be Tourette’s, but I mean! C’mon! This started on the AEDs. Do we really need to go that far? I’m just tired of the doctors here. There’s only one pediatric neurologist here and quite frankly, this broke graduate student cannot afford to self pay a doctor from out of town. But it looks like that’s where we’re heading because no one can give me an answer.

Hello Epileptologists!

I am a student of massage therapy and an epileptic. I am currently working on a research project, researching existing research on the relationship between massage therapy and seizure disorders (hopefully specifically epilepsy). Unfortunately, research in the MT profession is still in it's youth. Similarly, research on epilepsy has a distance to go. The union of the two has made my own research difficult with scarce resources. I am hoping that this community may have some sources to share in this regard. Thank you for your help and devotion to science!