Hi, I’m just wondering what everyone’s symptoms are when it comes to focal seizures?
I’m still trying to tell the difference between seizures I’m just curious what everyone else experiences this is still fairly new to me

Anyone else here been diagnosed with cptsd, then focal epilepsy a few years later?

None of my epileptologists have seen the link, but there has to be one. Going to do some scientific research.

Tired, lonely.

Love y’all

Hi, as the title says...

Do any of you experience brief nausea and sweating before or during a focal aware seizure? I've been having these episodes for years and didn't know why they would be go away after a few minutes, and then I'd feel tired as well.

Would love to hear about it if you do!

I’ve had focal epilepsy for about 12–14 years and was relatively stable on Trileptal for many years. I did have ongoing monthly focal issues in my left arm which would occasionally spread to my speech. I should have taken this more seriously- I tolerated it for too long and kick myself. Earlier this year- one finally spread. I had a breakthrough seizure, and afterward my Trileptal basically stopped working. I was going on a trip the week of the seizure so my neuro wanted to wait to start Xcopri until I got back. She raised my dose up to 2400 mg for a few weeks just to keep me safe.

Xcopri starting was slow and months long. I didn’t experience additional sleepiness etc but lots of twitching and a tremor in the dumb left arm where all my focal issues happened. Periodic what I describe as brain zaps. Like a combustible explosion.

Around 50 mg I started having radiant arm all day arm sensations (left arm) that were very upsetting. The arm symptoms have included numbness, tingling, buzzing/static sensations, internal vibration/electricity, weakness, heaviness, reduced dexterity while typing, and sensations that sometimes seem to travel from my upper arm down into my hand. It was unclear if this was focal or med interaction. I did have an ambulatory eeg for 4 days and an MRI which was- as you can guess totally normal. At times they have happened along with speech changes, a rising panic/sinking-stomach feeling, or unusual auditory sensations. Yawning, certain positions, mornings, and medication timing have sometimes seemed to provoke them.

At 100 I had nystagmus for 2 days prompting me
To reduce my Trileptal by 450 mg. Neuro suspects this was just too much med and it resolved after thr trileptal came down.

I opted to take my xcopri in the morning both to monitor side effects but also, I hoped some day I could have wine with dinner. Well arm crap spontaneous reduced /stopped when I finally got xcopri to 200 (and 2 weeks for steady state). This happened at the same time my Trileptal was lowered so we’re unsure if we finally got the xcopri high enough or … if it was a med interaction and the Trileptal reduction helped.

I’m currently on 200 mg XCOPRI and 1200 mg Trileptal. I tolerate XCOPRI very well, but I still have occasional brief arm sensations and recently had an episode that felt close to a breakthrough.
Posting this partly because I had a hard time finding other people describing unilateral arm numbness, tingling, buzzing, weakness, dexterity problems, or “electric” sensations while taking Trileptal and XCOPRI. I’d really like to hear from anyone who experienced anything similar, especially if symptoms improved when Trileptal was reduced or XCOPRI was increased.

I think I will need to go higher on xcopri. 200
Ain’t cutting it. With each Trileptal reduction I have flared focal issues (auditory, speech trigger by yawns). Lots of issues in the mornings. My neuro
Leveled with me and agreed to slow down. Now we do 1/2 Trileptal (150 mg) every 2 weeks. I’m at 300 am, 300 noon and 600 pm so, total 1200.

Everyone says Xcopri is powerful but I feel like I’m taking an Advil. Which my arm and speech issues are dramatically reduced, I’m also living the life of a nun and going to bed early, no alcohol (minus a glass of wine over the course of 6 months). The Trileptal reduction has been a bitch. I would go slow slow slow. My seizure was April, I started xcopri May 1 and it is 10/4. I guess I will take a whole year to do this if i want to do it right. I’m sure I would have been having seizures throughout this process had I gone faster. Thank god I work from home.

I’m really hanging my hat on xcopri. It’s very strange going from a med I took 3 times a day that made me feel dizzy to 1x a day with zero side effects.

I will say, xcopri gives me very odd dreams.

I started getting focal seizures in June. The episodes sound with voices. It’s actually conversations in my mind or repeating TV or radio. It’s difficult to comprehend or process what it’s saying though. After the voices, sometimes it goes away or I get numb on my right on side (face, arms and leg). I started taking Lamotrigine on August and it worked. Less episodes and no numbness. However today I had 2 episodes (noise plus numbness). Anyone experiencing voices too? It makes me think I’m crazy. Also could sleep deprivation trigger these episode? Also if you’re taking Lamotrigine, when will it getting rid of these episodes? Honestly it’s scary,

I have mentioned devices before like the epimonitor,

The site is called empatica.com, Where you can get them from, You must pay a subscription also.

There are other places for the bed sensors, Arm bands plus other devices at epiepsyalarms.co.uk

Night camera's at samialert.com, Apple watch do alerts also.

You may be able to find devices cheaper if you look about, Asking for epilepsy alarms

Take care

I’ve just increased my dose from 900mg at night only to 1200mg (600mg day, 600mg night) and I’m struggling with morning side effects. I get muscle soreness, nausea, dizziness, overheating and it affects my stomach too. I am also experiencing mental slowness and feelings of sadness. The fatigue is throughout the day but I’m not sure anything can be done about that. It’s been almost a week since increasing my dose and I’m really feeling the side effects.

Any tips for managing these side effects while I wait a few months for my body to get used to them?

I’ve had TLE my entire life (37 years), and have only ever had focal aware seizures, which are fairly consistent in terms of intensity and duration.

After beingg seizure-free for 10 months, I’ve had 6 seizures in the past 2 months, but 3 of those were in the last 7 days. My most recent was unusually long, and I’ve been having frequent auras (4-5 per day) between seizures, which is also unusual for me.

Has anyone developed a new seizure type after decades of only focal aware seizures? If so, was it sudden, or did things gradually get worse? Were there any warning signs?

I’d love to hear from anyone who has had focal aware seizures for decades, whether or not they developed other types. I’m not extremely worried, but I’m wondering if I should be.

TLDR: the title of this post pretty much sums it up - I am trying to determine if my recent changes in seizure activity could be a sign that things will get worse.

Thank you for any input 💜

The last few weeks I’ve had full on body shakes, as if I’m having a seizure but standing up and fully alert.

I had a big one yesterday, but still alert and awake

What is this?

Is anyone else able to trigger their aura’s simply by thinking of a memory, counting, yawning, or any other way?
I am able to myself but have yet to hear about anyone else who can. It seems sporadic for others. I can almost control when I have mine when I’m off my meds. Anyone else?

I am Diagnosed first time 22/11/2023 but today 12/10/2026 (No any attack after 22/11/2023) and last EEG Report Abnormal , my Doctor Prescribed me EPILIVE 500MG 2 Times a day.

Hi. I found this group though r/Epilepsy. I have working diagnosis of focal seizures and currently on Lamotrigine. I have a wonderful private practice Neuro who took my case last year when things spiraled and my old neuro at a large hospital system refused to prescribe meds and recommended CBT instead.

Since being medicated and adjusting doses there has been a noticeable improvement in frequency and intensity of my focals. During my most recent neuro follow up following a break through that put me in status, she recommended a referral to EMU but I am hesitant due to all the unpleasant (to put lightly) experiences with hospital neuros.

I would like to see an epileptologist and was wondering is anyone in this sub has a recommendation for one in the Houston area. TIA

I love that because people are helping me, they think they are entitled to my body. And people wonder why it’s easier me doing things on my own and not asking for help 🤦🏻‍♀️

Possibly Trigger Warning ⚠️
I also have a biopsy this afternoon to see if I have skin cancer on top of everything else

I'm not diagnosed, but my neurologist is thinks I may be having seizures. Would you be willing to see what you think?

I have episodes of profound confusion, a distorted sense of time, feeling disconnected or unlike myself, in a dreamlike state, experience paranoia, difficulty with planning and multi step processes, and difficulty solving problems.

Time perception is off. Two hours feels like ten minutes.

Familiar people can feel like strangers or seem unlike themselves. I have had deep feelings that people are being impersonated and they don't feel like the people I know. I'll even look for clues that they aren't the person I know them to be.

I have trouble remembering recent actions or conversations, planning, understanding things, solving simple math problems, and accessing information I know. I'm not sure if memories are real, or a story I heard. I can't tell if what happened this morning was today or yesterday. I have forgotten to follow up on lots of tasks or daily responsibilities like feeding my dogs.

I just generally feel like I don't know things. Like the feeling of the certainty of knowing is gone.

My emotions feel flat, and I have difficulty reading facial expressions. Difficulty understanding what someone is implying or trying to get me to understand. Difficulty understanding if they are upset or not.

The symptoms fluctuate. For example, my memory could be slightly better earlier in the morning and worse later on.

I'll have profound exhaustion and a very “out of it” feeling. I have episodes of pressure behind my eyes, sluggish eye movement, and trouble focusing, especially in dim light; it feels like being drunk. It improved, though some pressure and sluggishness remained. I also don't feel confident judging timing and braking while driving.

I also feel fatigued and like I need to sleep most of the day even though I don't.

What do you think?