r/focalawareepilepsy

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 😩

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 ❤️

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?

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?

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 🙏🏼

Or only other types like jamais vu, deja reve?

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.

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.

HI,

I'm sorry for a long post and my not so good english, and TIA to anyone who reads it.

I'm curious because I'm currently trying to figure out if my experience could be focal aware seizures.

I first started having these weird episodes a little more than a year ago. Here's examples of some of them:

• I'd be out with my friends and suddenly start having this weird feeling of confusion and things would feel out of place like jamais vu. I'd also experience this feeling of getting light (I don't remember if I felt "butterflies" in my stomach back then) but I wouldn't really feel anxious prior to that so I doubt it'd be the cause. It'd last for a short time like couple of seconds, then stop, and maybe 10 minutes later repeat. Of course after that I got a bit freaked out not knowing what's happening. Afterwards I felt sensitive to stimuli like light, sound etc., everything felt weird. I got home and tried to sleep it off, but couldn't fall asleep.
• Days later I felt foggy but better, then out of a blue I'd again experience this feeling of confusion, dissociation and jamais vu where things felt alien to me. It lasted for maybe 5 seconds, and after that I'd just feel foggy and mentally tired.
• Later that month, at work it happened again but this time it was much stronger. I felt butterflies in my stomach and chest, and also tingling in my head + this feeling of very uncomfortable euphoria which would turn into anxiety. Everything around me felt weird, like a vivid dream. I'd try to shake it off and calm myself. I went on my break and tried taking a nap in a safe place away from people but couldn't fall asleep. Everything around me was so stimulating. Light, sounds, people. I felt as if the more I tried to comprehend what was going on around me, the more confused and anxious I got.

Thing is. It lasted for about 2 more hours or so, until I got off the work, and from what I've read, it shouldn't last that long so here's my doubt.

I'm wondering if it was just ol' plain panic attack or maybe I just didn't have a chance to really calm down after the episode (stressful job).

Since then until this year I became more and more anxious, depressed, and agoraphobic. I tried getting psychiatric help but it didn't really help. Probably because I wasn't that anxious prior to these episodes but rather because of those episodes that kept happening and I didn't (and still don't) know what would cause them in the first place.

I've made many different tests like mri, blood tests, vitamin deficiencies, tickborne diseases etc. Nothing conclusive. I tried taking antidepresants which seemed to make things worse so I stopped.

Here I am today trying to figure out what would be the cause and kind of starting to doubt myself because those psychological symptoms became so chronic and mixed with those episodes I'm having a hard time telling one from the other.

Does my story sound familiar to anyone? Any help will be greatly appreciated!

edit: forgot to add but I'm also having some physical symptoms like this weird tiny spot of light in my view for a brief moments (like eye floater but it's more as if someone was flashing their flashlight from a very far distance) that I see from time to time, and feeling of tingling along with burning sensation in my head, particularly forehead area, and general fatigue.

edit2: I'd also experience this in a sleep, where I'd awake in panic and confusion not knowing where I am, or while falling asleep I'd "awake" being confused and not being sure what happened or if I even was asleep to begin with, accompanied by jamais vu.

Hi! I have a 3 day EMU visit at Lenox Hill Hospital in Manhattan. I was wondering what all of you suggest I bring. So far from looking on this and other groups I know the following:

Button down shirt
Underwear
Computer
Switch
Phone
Cords
Toiletries

I am also going to bring bath sponges I have from past surgeries.

Does it make sense to bring pj pants or do they make you wear a gown?

Finally, does anyone have a recommendation for a head covering for when I leave?

Just started Keppra last week. I felt fine for the first three days, but now I’m a mess of anxiety, low motivation, hopeless thoughts, and fatigue. Does this get better for most people if they wait it out?

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?

First...I feel so blessed I have somewhere I can go to talk about this, cause I'm sure my family is on the edge of being sick/ feeling helpless when I tell them....

Anyway....I'm moving back to AZ in a month, but, unless I'm moving in with my sister or kids, or an area I know... my health BOMBS when I move.... like, I get focal clusters that I haven't had in a year or new types of focal clusters... makes it worse that I'm now on perimenopause...and I may not have any rescue benzos (first move without benzos since 2004) so, I'll have to just deal on my own. I'm trying to stay calm and just surf it so I don’t stress myself out so much that my focal epilepsy wants to come out and play.

I have an idea for the first few night to stay at somwhere I lived at for 4 years, THEN go to my house, since it's about 15 minutes away, but, it's in an area I don’t really know...

I just thought I'd get my thoughts out here. Any advise or wisdom is welcome.

I'm going to give it to God and hope my brain plays nice. Not like it's

I have had myoclonic jerks at the dentist before. I have a dental appointment coming up and I’m trying to see what I can do to avoid seizures. Any tips? Also anyone have this problem with getting overstimulated at the doctor?

Hello,

I had a nighttime breakthrough seizure Friday and have spent most of the last 2 days sleeping. I was on the starting dose of Briviact, so we’re thinking it is just a matter of needing a higher dose than that.

However, my doctor is also talking about giving me midazolam tablets to take as a rescue med. I have focal seizures with a very long prodrome/post-ictal period that tend to cluster. I believe the thinking is that I would take it if I felt a seizure was imminent, or if I had a seizure and still felt “out of sorts” in order to prevent more seizures. Then I could limit future breakthroughs to be 0-1 seizures instead of a cluster of 10+ in a week.

I’ve mostly seen people talk about rescue meds in terms of TC seizures that last >5 minutes. Is there anyone here with only FA seizures that takes rescue meds? Do they help? Are you able to go back to what you were doing afterwards, or is it still a matter of being unwell & needing a large amount of sleep to recover?

Hello!!!!

I have been doing a lot of research into how metabolic shifts impact seizure activity. I have personally found that changing my “fuel source” through diet has helped me find a bit more clarity and stability.

Clinical research strongly supports this connection, showing that ketogenic and modified Atkins guidelines are frequently recommended for epilepsy because shifting the brain from glucose to ketones helps reduce electrical excitability and raises the seizure threshold (always a good thing). On a personal level, adopting an elimination diet was impactful for me in many ways. It helped me drop the inflammation (clothes and my wedding ring fitting was a huge win), stopped me from being constantly itchy (sleep without Benadryl!), and lowered my daily aches and pains from high levels to barely noticeable. Stripping away that physical stress is what finally gave me the bandwidth to focus my energy on my TBI recovery.

A friend of mine has had a severe physical toll of metabolic disruption and her episodes take a massive toll on her system, from seizures /fainting /severe memory loss to severe vomiting that drains her and leaves her incapacitated for days on end only to be set up for another round in a cycle that never allows her to recover fully. An elimination diet has helped her so much she is now able to manage and focus on the other aspects of her conditions. It is a harsh reminder of how deeply connected our physical fuel and neurological system really are.

If anyone is diving deep into this connection, I highly recommend checking out r/MetabolicEpilepsy.

It is definitely not a "one size fits all" solution, but I am curious: has anyone else explored the link between your diet, fasting, or general metabolic health and your seizure frequency?

I would love to hear your experiences with "brain fuel".

 

I’m waiting for my eeg but I’ve seen three specialists that think I have epilepsy - partial seizures

The “episodes” I have occur when the light shines through moving trees or off the water on sunny days / any kind of flickering - today I put on an eyepatch because I heard covering one eye could help - it was like immediate relief like my whole body just felt better and the roller coaster sensation in my stomach stopped.

This feels almost unbelievable to me, does this make it less likely that it’s epilepsy? I can’t believe how something so simple can be so effective