r/focalawareepilepsy

Mildly funny story from today. I had a semi-strong focal aware. A light Phase 1 lasting 65 seconds. Then a few minutes later a stronger Phase 2 lasting 2 minutes. All very common for me (about 20 like this a month).

I was in public. My stronger ones can be noticeable because my eyebrows twitch, my face goes pale, my arm hairs stand up, I keep looking behind me because of the ominous feeling. Plus other things. So during the stronger part, I was thinking of what I might say with my jittery speech if someone asked if I was O.K. I knew there was a word for it. Ep … something? Epilepsy? That just didn’t sound right. Thought it was a random nonsense word I made up. Luckily I hid the seizure enough so nobody talked to me.

Hi guys.

Before I begin I’d just like to say that I’m new to this sub. I’ve been having one of my “bad days” today as I like to call them so I decided to join and to hopefully talk with people who experience what I do.

I am a 26 y/o male, healthy from what I know and what my last doctors appointment said. But I experience very scary episodes of what I believe are Temporal Lobe Focal Seizures. These came on very suddenly around a year ago, never experienced them before then.

Some days worse than others, like today. I’ve probably experienced three or four “episodes” but can also sometimes go weeks or months without ever having symptoms.

Speaking of symptoms, they are always the same. I could be doing anything (like today I was just washing a dish for lunch), and all of a sudden there’s a creeping feeling of dread in my stomach, intense nausea, and a intense déjà vu and fuzzy feeling in my head. I can “see” things that feel like I’ve definitely seen or experienced before, dream, tv show, movie, general life, etc..

These attacks probably only last 10-20 seconds. In that time I have to stop everything that I’m doing and just get through it, although I can carry conversations well enough while these are happening that nobody knows what’s happening unless I tell them what I just experienced.

It’s very scary when these happen and I’m always left feeling drained and tired afterwards, like I need a nap or I’ve just worked really hard all day. I don’t really have the kind of money for a professional diagnosis and medication so for now I just have to go through it. But hopefully you guys in this sub can give me some advice on dealing with this new unpleasant thing in my life.

Thanks

Since being diagnosed with epilepsy, I’ve read that stress will trigger epileptic seizures in some people. Has this been true for a lot of you? I ignorantly assumed that if stress was the trigger, it was probably a non-epileptic seizure rather than an epileptic one. I guess I was wrong?

That "almost seizure" happened again, but what it is is a sudden rush of the feelings I'd have going into a TC...without going into that TC...it seems to have a post-ictal stage...This is soooooo scarey. 3 facts about me.

-My TCs are the Scariest most painful things your mind can come up with. Like, worst than full body burns...and you feel your bones brake. You pass out a few seconds to feel like a small child with amnesia in the scariest nightmare ever....

no wonder I get suicidal after them ....buuuut I haven't had a TC since 1999...But, I've have "close calls"

• I'm perimenopausal...Lamotrigine HATES hormone changes.

I'm sooooo afraid...my epileptologist is full, my new neuro in AZ is June 11th.

Do any of you have focals like this? Where it hits you like a wave and feels like a on coming TC, but it's not... OR do you think it's a warning of the things to come?

Oftentimes when I am feeling emotionally and mentally unwell, does this go hand in hand with epilepsy?

Hello,

I’m in a bit of a dilemma .. a sticky situation. My husband now 30 has had epilepsy since the age of 16. For 5 years he was seizure free up until last month where he sadly had a tonic clonic/grand mal seizure.

I’ve always worried about whether it would be right for us to buy and how we’d pay the mortgage if his health condition got worse to the point he could not work anymore and I also have to stop working in order to care for him.

Up until last month, we really built up the courage (and that was a lot for me as I am a chronic over thinker) to go ahead and put in an offer to buy a house. However, after the seizure we decided to pull out of the purchase sadly 😔💔 due to the uncertainty around his health.

We’re now considering buying a flat closer to our family who we can lean on for support during seizure emergencies and also eventually for help raising children.

I still find my self staying up until the early hours of the morning going over how we’d pay for the mortgage if his epilepsy got worse. I sometimes think, as a last resort we could always sell the property but then I stress about where that would leave us as a family with potential young children - stressed out and maybe in an even worse situation? Especially if we were to sell and make a loss.

Renting in the London area next to our family (whitechappel, milened, Stepney, bow etc) seems scary too as prices for a 1 bed flat on the private market demand atleast £1700!

We’ve been living with my family for 5 years of our marriage now, trying to save up for a deposit. We now finally have a good deposit amount but keep feeling like all our attempts to buy over the years have been blocked repeatedly! Is this a sign to not buy maybe?

In any case, we really can’t stay with family for much longer and we need to get on with our lives .. maybe think about starting a family in the near future 🙏🏻

I do really feel so heart broken about our situation as we’ve been so patient over the last 5 years .. all our dreams of a home and starting a family still feel so impossible 🥺

Any advice anyone could provide would be so appreciated ❤️

I'm currently 10 months seizure free and I think I'll be able to drive again in 2 months. But my husband is scared because the last time I drove, I had a seizure and totaled the car. Although I'm happy that changing medication has worked for me so far, I'm scared that it could go back to 0 days seizure free one day.

So my question is for all the people who say 'I'm x years seizure free'. Do you drive? And if so, do you have anxiety every time you do? Does it ever go away? I guess that's more than once question lol

But now questions for the people who have said 'I was x years seizure free until...' and then they have to start counting all over again. What was the longest amount of time that you've been seizure free? Did it just come out of the blue or do you think something triggered it?

After taking the right medication that works for you, does anyone ever go seizure free forever?

Idk my head is all over the place. I'm just tired of depending on my husband to drive me EVERYWHERE. I'm so sick of it. It's depressing 😞

It started out as a question post. But I don't even know where I'm going with this post 😩

At EMU right now. 30 hours in. Nothing on eeg despite tons of events (I get left face side tingling, numbness and sometimes blurry (foggy) eyes, and headache. Tonight they are doing sleep deprivation, lowering meds and hyperventilation. It looks like they think it is too deep to see on eeg which happens. Who knows? What do all of you think? It is annoying because now I am going to get more meds added on or changed. I am currently on Lamictal and she mentioned a ton of options. Thoughts?

Update: I am on hour 51. I was supposed to leave today. I will be here until possibly Sunday. Tonight they are stopping my meds. They haven’t seen anything yet. Doc told me to keep trying everything so wooo, video games, no sleep, getting stressed.

I am a 27 year old female. I was diagnosed with epilepsy when I was 23. I am on 100mg of Lamotrigine twice a day. I had no seizures for more than a year on this medication. After a year I started getting petite mal seizures again. I usually get them before my period but it didn’t happen in the first year of me taking the meds so why am I getting seizures now all of a sudden? I am trying to identify my triggers. I definitely know I have Catamania but now it doesn’t just happen before my period. Is caffeine a trigger for anyone? Even just one cup? Also I have really bad sinus. Can this also be a trigger. Tips on what I can do will be highly appreciated 🙏🏼

I developed epilepsy at 30yo (now 34) called #NORSE (New Onset Refractory Status Epilepticus). Tried so many combinations of medication and still uncontrolled, mainly focal, seizures. Prior to this I was always outdoors, planning trips abroad, driving around the country with my dog, part-time studying for a PhD and part-time working to build my career. I feel like so much of who I am/was has now been taken away.
I see lots of people talk on here about learning to appreciate the smaller things in life. But that just doesn’t feel like a life I want to live. Yes I have loved ones, but time with them while stuck at home/locally, or only being able to travel but it being well planned out with friends/family just isn’t enough for me.
I had so many dreams of places I want to visit and activities I want to do and I’m really struggling to get past that.

Any advice?

Or only other types like jamais vu, deja reve?

I have TLE and haven’t had any episodes since August. Last Friday I started feeling a little off. And today I had a focal seizure which sucks. I’m at work, and my son works with me. I remember sitting here trying to remember something and I was rambling on about it. I could feel the memory on the tip of my tongue and I was trying to get it out. After I came out of it I couldn’t remember at all what I said. I asked him and he said I was talking about football. Which is weird because I know basically nothing about football.
Now I feel like I shouldn’t drive again. And I was just looking at cars and was excited to get a brand new one. Now I Just feel discouraged and I don’t care what car we get because I won’t be driving it anyway. I have seen my neurologist a few times since I was diagnosed but I have never had a seizure since seeing him. Do I need to make another appointment? I don’t know How any of this works since Im still new to it. I have an appointment in July but should I make one sooner?

I’m not too sure on where to start but i’m curious if anyone else takes Hydroxychloroquine (Plaquenil) alongside Lacosamide (Vimpat)? I just started HCQ at 200mg daily and have been on 200mg Lacosamide daily for around 2 months now… I’ve quite literally just begun HCQ treatment but i’m worried about possible side effects. My neurologist brushed off the idea of loss of effectiveness or interactions with HCQ saying that “my body will tell me if something’s wrong” (not very reassuring for me!)

I keep waking up in and out of sleep with a sort of heaviness and feeling that’s mimicking low BP but my personal cuff reader says it’s normal (hard to tell if it works well though). Not sure what’s nausea or just anxiety.

I’m sorry if this is all over the place, had no idea if these should be separate questions or not! I’ve elevated my legs and I’m trying to get back to sleep but I keep waking up so it’s all very disorienting and i’m wondering if this lightheaded/faint-ish feeling will go away after i adjust to the HCQ or if it’s because of my overlapping medications. Just wanna avoid a useless ER visit and wondering if a cardiologist referral would ease my worries in the long term lol

Hello!!! Has anyone here experienced something called Sensory Gating? This is when during an awareness phase, , even a small sound (like a refrigerator humming) feels like someone is screaming in your ear because your brain has lost its ability to filter out the "noise."

First I thought it was because during brain surgery 2, a surgeon fixed my hearing but...turns out, it goes way beyond that. During my auras and focals, every sound....no other way to say it other than... bothers me. Like pierces and I have to get away. Could be my wife talking to me and starts shaking a can of spray paint, or someone talking to me at work and starts tapping their pen.

I find myself staring. I am aware during the entire thing. I sometimes will try to stop staring but, when I try to move my head it feels a heavy like I’m under water. Then I have a myoclonic jerk of my torso and I am able to stop staring. If I have clusters, this could happen every single time and leads to a myoclonic jerk. Is this odd?

I know that is a crazy question to ask with neurological stuff.

One time, I was sitting at the table eating with my family and my husband said, “uh oh, you’re having a problem”. I said, “No, I feel fine” then I had a myoclonic jerk. A lot of times after the jerks I will have dysphasia too. I was surprised that he knew beforehand, but he said I had this blank look on my face. I was listening to him talk the entire time. Never lost awareness.

If I’m walking around doing things and I have one of these moments, suddenly my thoughts feel like I can’t really “capture” them if that makes sense. If I’m standing, I will feel slightly weak. This will usually lead to a jerk. But, sometimes it doesn’t. Sometimes the staring thing and head pressure with dysplasia (stuttering and unable to pronounce words correctly) are all I get.

I have only heard one other person on the internet say they have this combo of things and they are also undiagnosed like me.

These are basically the typical seizures I have now. I feel like they have “organized” themselves and are pretty much the same every time.

I have daily focal seizures and sometimes a few more within one day… the drs keep adding medications increasing dosing of the meds but haven’t manage to find a way to stop this from happening. When I last saw my neurologist he referred me on a neurosurgeon but he said that surgery will not fix anything on my case.

I am currently on leviracetam 2000mg day and night, lacisamide 200mg day and night, Lamictal 200mg day and night and frisium at night. I am also on other medications as well. I was diagnosed with autoimmune encephalitis 3 years ago (I also have lupus) and I am also on imuprin, Xarelto (developed a blood clot while being hospitalised) and 4 rounds of rituximab a year...

when this will stop and what other drs can do!? Has anyone experienced the same things?