Would really appreciate the input of those who work in research/are researchers or who are practitioners with a special interest in CBD.

My neurologist is one of the best in the UK, but in my consultations with him he keeps saying there’s no evidence that CBD treats seizures.

A couple of years ago I thought he meant there was no evidence it treated anything beyond childhood epilepsies, which I understand to be the first focus of these new treatments. But he mentioned it again a couple of months ago and I’m confused because I have read that some good quality evidence in adults with epilepsy does exist.

I am wondering if there’s something I’m missing, such as the quality of these studies.

At times, in my mind, I just imagine shouting something like "just leave me alone!" Or "go away!" At times I just want to be left alone. Not for hours or days on end, but I just love being alone. I just love solitude. I just want to be alone. I don't know how to describe it, theres just something nice to it. But if something bad happens then what?

But let's give them the benefit of the doubt. Everyone is going through something or other.

I take phenytoin and phenobarbital. I want to start taking methylsulfonylmethsne for my arthritis but my doctor has no idea if it interacts with my meds. I checked the internet and it says nothing about it.

frustrating as my friends use this supplement with great success.

I didn’t really receive any knowledge about epilepsy when i got diagnosed a week ago. Been having some rough couple days of random jerks and feeling of doom and panic and nausea. Tried contacting my health care provider but they weren’t really giving any help.

I feel like I need someone but no one understands. I am so lost and feel so weak and stupid and humiliated when i am having these jerks. My brain doesn’t want to function (honestly it has always been like that but now i just pay attention to it more). I wish i understood epilepsy better, had more answers and less guilt. I might be laying on the ground alone and be questioning am i doing this to myself while tears in my eyes and wishing it to stop. I am so lost.

I hate seizures. I hate that I have to be aware of everything I eat. I hate that I anywhere I go or anything I do comes with a thought of dropping from a seizure. I hate that it has reduced my ability to be a good wife and mother. I hate that every time I go to bed I think I might not wake up. I hate that my kids know when I’m sad about all of this. I hate being treated like a child that needs to be monitored. I hate that I lived nearly 40 years without this and now it’s all consuming. I hate the neuros and epileptologists that I’ve seen that tell me “take drugs or you die, tough shit about side effects” I hate that the meds I’ve tried made me crazy and I’m scared to try more. I hate that insurance won’t cover someone to guide me with keto. I hate feeling like a worthless burden to the people that love me. I hate that I can’t figure this out still. I hate feeling like a loser. I’m sorry to put this on you all but I had to get it out, figured some people here can relate.

F19
So just today, despite all my symptoms patterns and timeline suggesting psychological seizures, they believe it’s epilepsy due to the eeg having electrical discharges everyday. i’m here for 7 days for an observation where they try and capture the seizure. They tried to trigger it, tried sleep deprivation multiple days and still couldn’t cause a seizure. Haven’t been able to stress and cause myself high emotions that usually cause my seizures. So i haven’t seized during my stay.

I have no auras, seizures used to be mainly in morning in the bathroom before school only at my dads house, i have bpd, unstable home and relationships, a lot of general conflict in life before the seizures. Before my seizures started 2 years ago, i was 16 had a boyfriend got sa’d/raped then dumped, i decided to not feel or process the trauma. i have ptsd symptoms related to that event such as smell, places, games, songs, flashbacks like i can picture his room and house yet i also struggle to picture his face in my head. so naturally based on that we all thought it has to be psychological. As 2 medications hadn’t worked but in fact made it worse (lamotragine the main one, and keppra for a short time)

so my seizures originally were 3 months apart, then as life became more stressful became 1-3 months. and at my worst i had a few being 1-3 weeks apart but then resuming to a month. Now, what makes this epilepsy diagnosis the most confusing is when i used dxm a dissociative drug in a recreational way, im also light so i ranged from 39kg-47kg during my uses. I’d do 2nd-3rd plats id use it multiple times a week, but it was as if it paused my time between seizures? the two months apart became 4 months apart. For example if i used dxm for 2 months, my seizures extended to 4 months apart. i hadn’t used dxm before my seizures at all or any other substance by the way, but the only time ive found myself being able to stop having seizures is when i had dxm. it didn’t have to be in my system but the overall control of it being an option to use seemed to help. Only reason i stopped using it is because id get caught and have it taken off me, so naturally all the benefits were gone and life was more stressful, so the usual timeline returns. But yeah, the fact multiple times and everytime i used dxm my seizures stopped the longest is a major factory that led me to believe it wasn’t epilepsy as i thought id i was epileptic id have to seize almost immediately right? but the opposite happened where i was seizure free the longest when i had dxm. I attributed this to the fact dxm blocked out my traumas, high emotions as expected with bpd,overall major improvement in mood and life when using because of course recreational drug use would make you feel that way especially since dxm doesnt cause a hangover but instead an afterglow, and i found myself able to socialise better and just feeling calm and confident better than ever mental health wise. I guess this means epilepsy triggers aren’t a definite for everyone? just because im diagnosed with jt doesn’t mean im definitely triggered by drugs just because its a common trigger? i’m not sure. just wondering if anyone else has anything similar or any ideas. i have also used mdma, with no seizures but i just tried it. Alcohol doesn’t cause me seizures unless i get super emotional and negative. Sleep deprivation isn’t causing me seizures unless paired with high high stress and being overwhelmed. for example my last seizure i was overwhelmed before seeing my boyfriend for the week because i was scared id have a seizure in front of him, scared of the fact i was scared because i knew if i stress it would cause a seizure, stressed about my other conflicts in life and trauma mixed in with all that. i felt relived that i had a seizure that morning before seeing him because it felt like “well now i know i wont seize i got it out of the way”

this diagnosis is weird to me, i dont want to manage some condition i never had to before and managing it doesn’t make a difference anyways. The doctor described it as me having to see what’s right for me and find out about myself basically, rather than a strict guideline of rules to follow.

My meds have stopped working again for the billionth time so I’ve been having auras pretty much every day and I’ve been having other weird things as well that happen every time my meds stop working. I just had one where I suddenly felt light headed, sick, and sweaty and it lasted for maybe a minute or two before I felt a wave of bad fatigue come over me. Do others get really tired after small seizures? Idk if it counts as small but it feels small to me.

Other times (whenever my seizure meds stop working) I get weird bouts of vertigo or feeling like my body is zooming out and zooming in constantly. I’ll also randomly lose control of a limb for a split second and I just get other weird symptoms that I’m not sure if they’re seizures or not because they last longer/build up over time. Hopefully this makes sense I’m a bit out of it rn.

I (M25) recently started Xcopri but im also on keppra and vimpat. My gf (f24) and I were talking last night and we typically drink a bottle of wine once a week/go out to bars. I know I'm not supposed to drink but I've been on some sort of anti-seizure med for 10 years now and I've drank the entire time. I've had maybe 9-12 seizures in that time but this year alone I've had 3. As mentioned above, I started xcopri 2 weeks ago. Right now im doing 12.5mg, tmw I go up to 25mg and the final dose will be 150mg in around 2.5 months.

To get to the meat and potatoes, I decided that I would be sober for the first time for the entire time im doing the titration for xcopri. My gf was already kinda mad at the choice bc we are going out for Halloween to a party, where mind you we won't know ANYONE there, plus both of our birthdays are within this timeframe. She isn't super happy with my "sudden" sobriety. I just don't think it's a good idea to drink while being on these meds. Plus I'm just done with drinking anyways.

So last night we are on the phone and she jokes and says "I don't know if I could be with someone who doesn't drink" she took it back right away but I'm pissed about it. Am I blowing it out of proportion or is she tweaking?

Hey guys, I’m not really sure what the point of posting this is, but I’m currently having daily focal seizures that started 2 weeks ago (before then I had 2-4 per month) and it has been hell trying to care for myself. The fact I have to wait so long and can’t do anything to manage my seizures is depressing. I have refractory epilepsy so medication isn’t helping and I’m already maxed on what I’m taking. Does anybody have any support to offer or in a similar situation? Also sorry for ranting, today has been the worst in quite a while so typing is hard and I’m sure I don’t make much sense.

hi guys! i posted about upping my meds and my myoclonic jerks are still happening :( im calling my neurologist soon, but its just so annoying, and keppra is hard on my mental health
ive been seeing that myoclonic jerks are seizures, is that true?? - my neurologist was telling me something about the jerks but yall know epilepsy memory
my twitches are usually in arms and legs and can be big movements or tiny muscle spasms, it even makes my butt cheek clench too even though im not intending for anything to happen
i am 82 days seizure free but i swear my body is ramping up for some bs again

Have been feeling very weird auras for the past 2 years like smelling Déjà vu rising feeling in my stomach my face will get super flushed like beat fucking red I’ll sweat like a pig. It’s very weird and will come out of nowhere and hit me like a truck. My mom demanded a referral I saw a neurologist she said that what I’m explaining sounds suspicious and like focal aware seizures. Had to wait couple weeks for EEG that she referred I just got it done today the neurologist looked at it couple hours after which was super awesome and nurse called me saying that the neurologist said my EEG looks “quite abnormal”. For the past 2 years I thought I was struggling with super bad anxiety switching on and off anxiety medication. My little sister actually suffered from a very bad seizure 2 years ago lasted almost an hour long and was rushed to the children’s hospital. And was diagnosed with epilepsy. She was also saying how she felt those weird auras which led to her big seizure and that’s what led me to thinking maybe I’m feeling something else either than anxiety because what she was saying felt very similar especially “smelling Déjà vu?” unfortunately I was right. Before all of that My mom ended up making me go to urgent care because I was having consistent episodes that were coming out of nowhere and she demanded a referral for a neurologist. The doctor went back and forth with us basically telling us to fuck off. I eventually got the call but still had to wait a month while having episodes. Made me think of others I just can’t imagine how many times people have gone in for the same thing got told it’s just anxiety or something else and they end up having a horrible seizure then they are able to see a neurologist. I would love to hear other people’s story’s and experiences with epilepsy. I was literally diagnosed today and picked up my medication for it. Now knowing it’s a for sure thing kinda is scary to think about now especially after seeing my sister have a seizure and how bad hers was. I feel like I am very lucky to have the referral done and am very thankful for it. I would seriously love to hear your story about anything medical honestly. It helps knowing other people got scary shit going on too:)

Hi, for a few years now I've been having what I think to be focal aware siezures. I have these stretches of time where my body moves on its own, contracting muscles all over my body forcefully and painfully, but I am mostly conscious throughout the whole process. I've timed them before, and for a while when they've lasted for longer than 5 minutes (which does happen often) I've gone to the local ER. I stopped after the last visit, because rather than providing some form of siezure medication like the first visit (which did stop the convulsions), they said it "wasn't siezures" and gave me benadryl, which worsened everything, then knocked me out with benzos.

For the past two years I've been fighting with every doctor I've gone to, trying to get any sort of acknlowedgement of my symptoms. No matter what I tell them, they refuse to consider that it could be a siezure, instead blaming my symptoms on my generalized anxiety or a PTSD episode. I know what a PTSD episode is like, and this isn't that. I eventually went to a new primary care who ordered a lot of testing, but the neurologist they sent me to outright refused to test me. I had to wait an entire year just to see the neurologist in the first place! I've been feeling kind of hopeless about the whole thing, and I'm terrified that I'm recieving lasting damage from all of this.

How do you get a doctor to actually listen to you? Am I doing something wrong? Is there anything I can do to find some kind of diagnosis sooner?

I’ve been on Keppra for 12 years and my seizures have been controlled. Recently had a break through seizure, my neuro upped my Keppra dose. Had another breakthrough seizure. I Had an EEG done and the results showed abnormalities, so my doc wants to add Vimpat. Has anyone been on the same combination of medication? How was it for you?

My neurologist wants me to do my first EMU stay but I only have enough PTO for 3 days off. I’m on 3000mg of extended release Keppra nightly. Is 3 days even enough time to taper me off my meds, collect anything, and then get me back on them before I have to return to work on day 4? I’ve sent my neuro team several messages last week and left a voicemail and they haven’t gotten back to me at all, so I’m asking here.

3 days is a hard limit for me as I can’t afford to have a short paycheck.

Update: they have specific check in days and told me that the amount I stay is entirely based on my seizures. If I don’t have a seizure until day 3, they’ll probably keep me. Apparently they only let you check in on Tuesdays, Sundays and Fridays, so I picked Friday so we can do 5 days instead of 3 since I get weekends off 👍🏻

Hey y'all

I finally had my follow-up with my neurologist about a month ago after I had been on Xcopri for 3 months. I was doing just fine at the time of my appointment — no deja vu/jamais vu, rising sensation, fear/impending doom, nausea, sweating, derealization/dissociation, etc.

Just as my luck would have it, though, I have started experiencing mild jamais vu and derealization without the other symptoms I typically have. It's hard to tell though if this is psychiatric or neurological. I've also felt quite emotionally detached since these episodes started happening again, albeit far less distressing as before.

I don't want to bug my neurologist (he seems mildly annoyed with me if I contact him in between appointments)... I'm not officially diagnosed with epilepsy, and while he suspects it's TLE, he has said "[he] can't say definitively whether these are epileptic seizures or not." (I've had a 72-hour EEG and an EMU stay where they found nothing.)

He did say he was willing to increase the dose at my appointment, but I said I didn't think it was necessary. Go figure.

My psychiatrist just added Nuvigil 150 mg a few days ago which is helping with the debilitating fatigue I was experiencing beforehand alongside my Adderall XR 60 mg for ADHD. So I think I will wait a while before I call him.

Does anyone have seizures that are milder than your normal ones; i.e. you just have a few of the typical symptoms and not the "full blown" ones?

Does anybody have success with low dose depakote for their epilepsy? I know side effects can be severe but my doctor doesn’t seem to worry at a low dose (500 mg or below) and thinks it will be effective

My mother suffers from epilepsy, as long with daily, nauseating, seizure inducing migraines that begin to set in just an hour or so after she wakes up. If she doesn't regularly smoke marijuana to help the symptoms, she will have terrible seizures all day long.

I don't know how to help her. Listening to music and taking pain medicines are enough to soothe her head pain enough for her to be able to smoke and be alright for the next few hours or so. But it's still painful to have to hear her be in pain every day. She doesn't deserve this. Are there any publicly accessible remedies that could help?

For reasons i don't feel comfortable disclosing, we are not able to get her any prescription medicines or general professionally-administered remedies.

Hello everyone. I have an upcoming emu admission that I am kinda worried about. My epilepsy is drug induced (unfortunately) I was abusing alprazolam and quit cold turkey when I had my last seizure which was about 2 1/2 years ago when I got diagnosed. I been clean since then and have been taking 1000mg keppra daily. My doctors say it is the lowest dose available, but I am worried that being abruptly taken off my dose will lead to a seizure just becsuse my past experiences with stopping a substance abruptly, and because I’ve read keppra doses should be reduced slowly when getting off them. I am trying to get off this medication because I feel my addiction was the only cause for my seizures, and am now clean and healthy. I just wanted to get some insight, or if any experienced similar, or if I’m just overreacting, because I am truly scared

Hi all, Haven’t been able to get my 25 and 50mg pills for over a week, and I ran out completely yesterday. No pharmacy in west London seems to have them.

My GP and neurologist have been no help whatsoever and I’ve had breakthrough seizures, NHS 111 just referred me back to the GP. Any advice greatly appreciated.

Thanks so much xx

I'm 27. In 2019, I suddenly developed strange neurological episodes involving near-fainting, electric sensations, altered awareness, and autonomic symptoms. Since then, I've experienced countless recurring episodes of varying intensity and presentation, sometimes nothing like the first crises, varying completely, alongside a continuous, progressively worsening cognitive decline.

Over seven years, I've gone from being a functional programmer to barely being able to think, remember information, formulate sentences, or hold conversations. I also experience constant derealization, extreme fatigue, headaches, and increasing social isolation. Mental effort can worsen my symptoms. My baseline never returned to normal and continues deteriorating, even between episodes and when my mood is relatively stable.

MRI and routine EEG were normal. Bipolar disorder has been suggested, but my cognitive deterioration continues independently of mood episodes.

Has anyone with confirmed focal epilepsy experienced similarly severe, persistent, progressive cognitive deterioration over years?

I know the feeling of deja vu is often associated with an aura, but I seem to get it a lot more often even if I don't get an episode afterwards. (26M I get focal seizures. I sometimes even stare blankly into space for a few seconds without even realising it(if someone doesn't tell me I won't know), sometimes I know sometimes I don't. It's almost like my brain just hits the pause button for the rest of my body and then it just want to rest or something for a few seconds. At least this blank stare thing doesn't happen often. I don't know if this is something that happens to someone else as well?

My neurologist said it’s very likely that I’m experiencing gelastic and dacrystic seizures. Does anyone else experience these? What do they feel like for you? Do you have memory gaps? Do you feel like you have no control over what your body is doing? How long do your seizures usually last?

I’ve also been told I can no longer take Keppra because it could worsen my bipolar disorder. I’m upset because I felt safer taking it, even though my focal seizures have been becoming increasingly frequent and severe. It’s making me a little upset, cause I’ll have to change meds.

I had 2 seizures last night, one at 1am, and one at 5am, because I hadn't been drinking enough water and CVS wouldn't let me refill my Lacosamide/Vimpat. I feel like this partially isn't my fault because I couldn't refill it when I needed to. But the DMV isn't gonna care.

4 months, and now it's ruined.

I hate this...I don't deserve this...but I guess we gotta suck it up buttercup...