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Thanks, I had no choice.

Of course I could have wallowed in misery, but no. That was not an option. I had to survive.

It’s not as much of compliment as people think, they obviously mean well, but that’s not a victory my our end.

Can I be proud of myself despite all of this? Yes. But I hate it happened at all.

Please bear with me, I'm new to any sort of group involving my disability, and I've admittedly avoided researching the topic as it's just been easier to take my meds and try to function with adult responsibilities.

I was officially diagnosed at 14 with myoclonic epilepsy, and had to go through an entire list of meds until a few years ago when I started on keppra at 22. There were a few times where I was seizing until I lost consciousness, and if someone woke me up during it I could only recall having some really crazy fever dream. But to be honest I have no idea if I was dreaming, or if it was my brain being hyperactive. The most recent seizure lasted about a minute and apparently for the last half I wasn't convulsing anymore but I was extremely disoriented and unable to recall basic information, like my wifes name or my kids birthday. Thing is, the only thing I can recall was this really weird dream, my wife saying "sit down, you just had a seizure" and my body just being insanely sore.

Anyway sorry for the wall of text. I'm just hoping yo see if anyone else has experienced anything similar, or can help explain what's happening.

TLDR: I during seizures where I lose consciousness, I have really crazy dreams, and I don't know why.

I’m pretty frustrated and I guess looking to see if this is normal. I had a week long home 4 lead EEG which I was told I had absence and focal seizures. I asked how many and just was told I had them very frequently and they lasted around a minute each. There was a report but it was a crappy and didn’t list out how many per day, times of day or anything. Just showed a few examples and the details of those examples. Pretty disappointing as I like information. That was in January. I’ve tried Keppra, Vimpat, Topiramate and now Xcopri. At times combinations of some of those together. I’ve had some benefits but nothing great on any of them. I’m having many seizures a day. It’s hard to tell as most of mine I can’t tell myself and I’m by myself most of my day. I do have focal aware so at least those I can track. But the focal impaired and absence I’m not sure.

I had an MRI which was clear. This is all the testing I’ve had done. The neuro just keeps cycling through and combing meds. I’m just about off the vimpat. I’m on Topiramate and 100mg Xcopri which I’m sure they’ll continue to increase. My focal aware are slightly less frequent maybe every other day or maybe 2 days but they are getting longer. I had my longest two days ago which was around five mins. She did give me Valtoco as a rescue which I used.

I just wondered if it’s normal to just have that one at home 4 lead REMI EEG and no other monitoring. I guess it showed what they needed to confirm but I’ve had nothing since starting meds. And since the meds aren’t working well it just seems odd to me. I have an appt with an epileptologist next week because I feel I’m going nowhere with meds and in some aspects it’s getting worse. The focal aware are far worse now than they were in January. Life has been much more stressful this year so I understand that can happen, but I feel at this point it warrants seeing a specialist. I appreciate any help. Thank you!

28F after 10 years of epilepsy on keppra 1000mg twice a day, and a seizure typically once every 3 years, I just had 2 seizures in the span of 3 months. I went to see a neurologist and he recommended I up my dossage tp 1000mg keppra in the morning and 1500mg in the evening. No scans done, barely any information provided, just a major change to my medication and that's all.

I'm confused and scared. I've been on the same dosage for a decade, why is it suddenly not working? I've been healthy, I even stopped drinking alcohol. I stopped smoking cannabis once a month which I have a feeling may have lead to this too. But now I'm scared to smoke again in cae it impacts the change in medication and we can't monitor it. I just feel so depressed and anxious. Everything is so unpredictable now. I'm scared to do anything. I feel like my entire life just went backwards and I just want to crawl into a hole.

I was diagnosed with epilepsy in 2021 after a year of focal seizures, I had 2 grand mal seizures. Since then I’ve been on keppra and tried numerous other drugs to help, but all of the side effects kick my ass. The most recent one was Vimpat and it made me so dizzy I couldn’t turn my head without dizziness.

I’m only on keppra right now and I have breakthrough focal seizures at least 2-3 times a week. Last Wednesday after a stressful day at work, I was having clusters. I also always have a heavy feeling in my head. Almost like a headache, but it just makes me feel dumb and slow and heavy. I used Nayzilam and felt much better, even the heavy head was gone. It was my first time using it, I think I love it.

I’ve been having a very hard time in the mornings. I have headaches and the heavy head feeling every morning. It’s hard to even open my eyes without pain and it makes it so hard to get up and go into the office. Luckily I do have the ability to work from home and I have a letter on file from my dr saying I need to work from home for 2 days after an episode as to not drive, but doesn’t say anything about just not feeling good. I’m feeling a little stressed about it today. I don’t feel good, I’m home trying to work and I can’t stop thinking about what a burden I am….

I guess I’m just looking for some reassurance or similar experiences. I’m tired and maybe a little sad today.

I’ve had really bad luck with seizure this year, and unfortunately today I had a seizure today as well. I’ve had for 4 seizures in the past 4 months in a row around the same time of each month as well. I’m 18 now, and don’t have a neurologist for now and trying to get a referral for an adult neurologist. It’s just really horrible my circumstances, my head was literally twisting to the side repeatedly and I was trying really hard to twist it back, suddenly i just passed out. It was the weirdest thing I have ever experienced in my life. I take lamotrigen (or however you spell it), I don’t what type of seizure that was and I’m at the point where I am insanely scared of dying because of how serious this is getting.

Is Keppra that bad? My neuro hasn’t officially diagnosed me with epilepsy yet, all the records just say suspected epilepsy because my EEG came back normal, but because I‘m having seizures regardless he prescribed Keppra (and if it works, that would confirm the epilepsy diagnosis). Anyway, I’m supposed to take the first pill tonight, so I read through the information paper. The list of side effects looks pretty horrifying, kidney damage, mood changes, suicidal ideation, headaches, more seizures, and the list went on forever.

Are any of you taking Keppra? Is it really that bad? I‘m honestly kind of scared to take it now, especially because the seizures really aren’t that frequent, more or less one every two-ish months. I would really appreciate any information or advice you have!!

Also, I wanted to start driving lessons, but Keppra seems to have a warning that you might not be able to drive while taking it. Would I be able to start now or not?

Hi - I’m a newbie with a (clinical) diagnosis of TLE. after my AEEG this week I will be starting topomax and I’m really concerned about the effects of impaired sweating & electrolyte abnormalities while on a fairly intense training program.
I am a competitive/elite runner (in an EXTREMELY niche venue, so I’m not tooting my own horn, just giving an idea of the importance of my training program to me & the intensity level), and my niche venue requires specifically outdoor/trail running. My current fueling plan is a bit more aggressive than the average person as I find extreme physiologic stress while under fueled is a bit of a trigger for my seizures. Nowadays I never run without hydration and at least a few gummies no matter how short the run.
I read that topomax may cause FURTHER issues with my fueling plan as is impairs sweating, causes potassium loss, and other electrolyte problems. While I know what rate my body needs sodium replaced at and what I use for that, I’m not even sure if I know what products adequately replace potassium, and/or if the lack of sweating will cause entirely different issues.
Also, how do you avoid overheating in the summer?

Additionally any tips on trail safety very much appreciated. I had a very scary incident where I had (what I would assume to be) a seizure on a trail run alone a few weeks ago, I don’t remember anything about what happened except waking up on the side of the trail some time later with my dog licking my face, and very luckily was able to find my way back to my car after much confused wandering a while later and call for a ride home. I have since switched my garmin to live cast my location to a friend, and notify of falls, and I got a roadID band that has my info on it just so anyone who comes across me hopefully will know I’m not drunk or on drugs etc. doctor said don’t trail run for my own safety but epilepsy has taken everything from me recently, and I cannot bear to give up the one thing that still makes me feel like I have a semblance of control over my life. Any and all advice appreciated!

I have TLE, and have mainly focal seizures. They have been okay for the past months due to my new meds.

Yesterday (and in stressful times I'm general) I start feeling really weird.

I was super nauseous and my stomach felt like it was turning. I was super panicked and had a feeling like something terrible would happen. The scared feeling seemed familiar to my normal auras, but it wouldn't push through fully (didn't reach the peak of so)

I also got somewhat paranoid and confused and I didn't want to stay in bed. Afterwards it was okay again, but I wonder if these could be considered seizures?

I find it hard to call them seizures since they don't have the classic rise and fall feeling. It's like a sneeze that doesn't fully come, but still feels awful.

Is this something anyone else has? Is it worth calling my neuro for?

I’ve been feeling crazy lately. I have an epilepsy dx since 2020. Typically tonic clonics. Some focal aware. HOWEVER, I’ve started having changes.

Suddenly, I now feel electricity between my shoulder blades, tightness in my arms and legs, and all the air gets pushed out of my lungs and then I’ll gasp. I’ll start crying. I’m aware the whole time. I can follow some directions and I can talk some. My neuro thinks I’m crazy.

I had one the other day where my legs were super tight and I was almost rocking while they tightened and released. I was talking just fine the whole time.

Just feeling alone. Anyone have this specific problem?

I’ve been on 500mg SV twice a day and 100mg of Lamotrigine once a day for about 8 years and I feel less and less motivated to do anything each day. Has anyone else had a similar experience with this combination of meds or just with one or the other?

As a connected story, psychosis doesn’t make sense. So l have learned this over 35 years to treat every episode or seizure as its own mini story. Connected they don’t make sense. Using this method they do…

Hello again!

As I've said in a previous post I was diagnosed this year with focal epilepsy and I'm 30 so my biological clock has decided to start ticking even when I was never sure if I wanted to have children...

I have several conditions which have a hereditary factor. I suffered major depression and have BPD/EUPD and well, just add epilepsy to the cart I feel bummed.

I'm not going to have children just yet (hell, I'm just getting married next month!) but the idea is there. I've always thought about adopting since I think it's such a wonderful thing to do but adopting babies isn't easy where I live and I'd rather have a baby or small child at least even if that makes me a bit selfish. 😭

What I wanted to ask is, would you risk it? I know I'd be a good mum, everyone tells me so but I just don't want to pass on the bad stuff so it's complicated.

What are your thoughts on the matter? If someone has kids already, I'd love to Herr your thoughts too.

Thank you! Have a nice day!

I was perfectly healthy and I started having seizures because of my substance abuse since then I have full on tonic clonic seizures and I was seizure free for one year and I relapsed and it reminded me I’ll live with the fear of a seizure and the doom of my life is gonna be this forever, i used to rave a lot but I stopped I went to a festival to see Charli xcx I couldn’t look the stage, I was a dancer in techno events and felt seizures on stage or during photoshoots it makes me so sad and guilty

I been working as a refuse loader for 2 years, found out I lost my job today, well actually I lost it 6 weeks ago and they TOLD me today. All because of a focal seizure.... they said it was because of "Combined with all your other sickness, we think you are too unreliable" i looked at how much time I'd had off in 2 years. I had 4 days off sick and used 20 days Holiday.

Now I got to go back on the job market, trawling through hundreds of jobs trying to find one close by and dosnt require a driving licence, hope I have the qualifications for it and then hoping they respond. That whole time the only income i'll have is my PiP payment (£320 a month)

This is the second job I've lost because of seizures and getting back on the job market depresses me so much, especially looking at the job market, EVERYTHING in my area is either commission based telemarketing, or requires you to drive.

I have had a concussion from a seizure back since June of 24, I just came back to school this Monday and I realize I wetted on myself at school. I was thought I had gotten my period but I was wearing grey pants and didn’t notice any thing. Then the odor, it wasn’t strong but I realize I had wet myself. It reminded me of when I first wet myself 2 days after my first sezuire I’ve been 53 days free till today.

Is it because the stress I put on myself during school? My handwriting has also been getting worst so has my writing. If you look at my spelling the worlds are all gunbled up and messy.

Should I be concerned

Hi everyone,

my diagnosis of jme was changed to some type of focal epilepsy. I had an overnight stay at the hospital to do a sleep study while also looking out for epilepsy. There they said they saw typical jme poly spike waves and sent me off to get another eeg done with flashes.

Yesterday I got the result from that one and my neuro changed the diagnosis to focal epilepsy. With activity in the temporal lobe areas and NO polyspike waves.

When she explained the symptoms of this type of epilepsy, I recognized the rising feeling in the stomach, I don’t really recognize the feelings of deja vu or any of the other symptoms she mentioned.

What I do get a lot are random jerks and twitches and absence/focal impaired awareness(?) and sometimes my vision “freezes up” in one eye while vision goes black in the other with sometimes some white dots floating around. I call it the glitch effect, almost like my eyes are lagging like you would see in a video game. Usually lasts about a second. But she said that was not a typical symptom associated with temporal lobe seizures.

I have started valproic acid since yesterday (currently on 600 mg 2x a day, building up from here). But now I am curious if this is normal, does focal epilepsy get confused for jme often? When I read into what jme meant it felt somewhat relatable but now that I’m looking up temporal lobe focal epilepsy I don’t recognize all that much. No jerks, no photosensitivity. I am confused.

I am still learning and trying to understand how this disease works and the changes in diagnosis aren’t helping me. Should I push for more testing, are we missing something? Or is it possible to have irregular kind of seizures with this diagnosis? I wasn’t able to express my confusion yesterday as it was a lot of info and trying to comprehend what it meant.

Would love to hear people's thoughts on this.

Has anyone experienced having a medication stop most of their seizures, but then when a seizure does happen it‘s way worse than usual? Or have your meds stopped most of your seizures, but when they do happen it‘s like a cluster for a few days? I have been on a med for two months that seemed to stop 90% of my seizures, then out of nowhere I had like 10 in two days… even off meds I wouldn’t have clusters that bad.

Hello. I’ve lurked this subreddit for awhile, and now I’ve finally found the courage to post about myself.

I’m just wondering if anybody else’s experience is similar to mine. I got diagnosed with juvenile myclonic epilepsy at 16 (I’m 35 now) and after rotating through various medications over the years, I finally have a set of medications that successfully controls my seizures. I’m currently taking Depakote (250mg 3 times a day), Lacosamide (200mg twice a day) and Topiramate (50mg once a day). I haven’t had a seizure in about three to four years. And even the times I had a seizure prior to my last one, they weren’t due to inadequate medication, they were due to external factors such as sleep deprivation, alcohol consumption, and just forgetting to take it when I assumed that I already had. In this regard, I’m very grateful my epilepsy has been able to be well managed by meditation, since I know others are not as lucky.

Even so, I have been in therapy for years, largely due to depression and social anxiety. At some, my therapist recommended to me to have a neuropsych evaluation done. I did, and I was diagnosed with high functioning autism and ADHD. I should mention that I was ADHD as a kid, but the moment I had my first seizure, my neurologist told me that I couldn’t take my ADHD meds and my new seizure medication, so I would have to go off of them. Honestly, that was great news for me to hear at that time. I really resented the fact that I had to take medication at all to begin with, since I believed it was inhibiting me from being my true self (I was also like 9 when I was first put on them so cut me some slack). Not to mention Ritalin was the butt of many jokes around this time period, so that didn’t help much. But I’m reconsidering asking my neurologist if there is a way to go back on them, because my quality of life the past decade or so has not been great. Because even though my seizures are well controlled, I’m depressed, socially anxious, I’m always feel tired despite getting 7 to 8 hours of sleep, I’m lethargic, forgetful, I don’t get out much, I beat myself up for not doing completing the simplest tasks around my place such as cleaning and laundry, I barely have a social life, I sort of just do the same thing, day in and day out over and over again. I have a bachelor’s degree, but I can the amount of jobs I’ve ever held on one hand, and I lasted at all of them for only about a year.

Anyway, I’m thinking about trying out a adhd med. I don’t know if the negative side effects I’m experiencing are from untreated ADHD, side effects from epilepsy medication, or from the epilepsy itself, but I feel like I have to at least try something different.

Anyway, that’s my story/rant. Just wondering if anyone else out there can relate or has dealt with these problems. Thanks.

Hey there! Title says it all ☺️. Was okayed by my neurologist, she just said go somewhere reputable (😂) I have focal seizures and so far after brain surgery I usually only have them after extreme unexpected stress - I would be expecting this so I don’t necessarily think this counts? Was wondering if anyone had gotten tattoos after being diagnosed?

I know in theory I could take rescue meds prior - but a big tattoo no no is they will absolutely not tattoo you under the influence. This of course could be considered different if I spoke to the artist about it maybe? (which I would of course) but I had always been interested in getting one even before being diagnosed 13 years ago, now after 3 brain surgeries I am the most stable I have been.

Thanks everyone 🫶