u/Icy_Mast_Below

Hi,

I was diagnosed with temporal lobe epilepsy 3 months ago. I only have focal aware seizures, mostly in clusters. They have the hallmark symptoms of intense déjà vu, Deja reve, seeing “dream memories” that are frightening and make no sense, vision issues, visceral terror, and nausea. A cluster or one intense one will cause me to experience lasting symptoms of fatigue/malaise and familiarity for days or a week afterwards.

I had a clean MRI and EEG but was diagnosed based on symptoms. Brivaracetam immediately improved my symptoms.

Thing is, now I find myself doubting my diagnosis a lot. I’ve had anxiety issues through most of my life. I have a black mark of a PTSD history on me. These “epilepsy” symptoms have caused me tremendous disruption and it’s been very challenging for me to work, between the cognitive symptoms and the med side effects. I’ve had to change my entire way of working, living, and taking risks. But worse than that is how it’s changed my (already strained) relationships. My family doesn’t believe it’s real, I’m pretty sure one segment of my family (estranged) will actively use it against me given the perfect opportunity. My marriage has been massively strained - without me able to do so much of the labor, and with the constant medical visits and me talking about feelings/symptoms, we’re having to start couples therapy.

Then there’s the work aspect. I can still drive. However, I’ve been acutely aware of the fact that if I lose the ability even temporarily, I will be forced into disability. We already had one incident of a woman getting access to everyone’s medical information and then using it to blackmail folks. Thankfully they didn’t know about my epilepsy…yet. Because she hated me and would have absolutely used it against me.

All this is making me think…it must just be that I have really crazy panic attacks that are all in my head and not seizures, right? And I overreacted until I got diagnosed with epilepsy. I want to go off my meds, never think of epilepsy again, and be cured. I know that makes no sense and may kill me if I try, but that feels worth it.

I’ve been down and out with a severe dental infection for close to 5 days, and sleeping on average 2-4 disrupted hours per night. Not to mention obviously huge amounts of stress and physical pain, and being unable to eat substantial food. We tried telling doctors & dentists that I needed slightly more urgent treatment for this due to the epilepsy, but apparently nobody thought potential focal seizures were that serious, and neither was an infection chewing on my jawbone. I digress…

Yesterday, I dozed off and had a fucked up nightmare about a weirdly familiar, distorted house type building that had too many rooms. I woke up feeling extremely disturbed, but forgot the details of the dream shortly afterwards. Thought, well maybe a mild nocturnal seizure, not unexpected with what’s going on. Figured the good news was that I didn’t have any post-ictal issue to speak of.

Then yesterday, I had a weird “episode” after finally getting the offending tooth removed. I suddenly got a weird tingly tension all through my jaw and head. Then I got extremely disturbed and uncomfortable, but not the visceral terror I usually get. Started feeling like everything was too bright and too loud. Then I started pacing because I needed to “run away” but couldn’t figure out where. My husband asked me to tell him what was wrong, but I couldn’t find the words to describe it. It lasted a couple of minutes, and was followed by a mild adrenaline rush. Thing is, I don’t feel the severe cognitive malaise I usually do the day after a prolonged daytime seizure.

My question is…WTF was that? Is that like anyone else’s focal seizures? I’ve been mostly seizure-free on my new medication, so I’m not sure if this is just some weird modification of one, or if it was some kind of anxiety attack. Mine are usually an intense and screwed up Deja reve/deja vu with disturbing mental imagery and visceral terror, followed by a prolonged post ictal period.

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?

We’re about 1 1/2 months shy of it being a year since I got estranged from my sister and her family.

I thought I’d be “over it” by now, and tbh, I think so did everyone else. We have several birthdays and holidays coming up in the next few months. I also am trying to come out on the other side from a serious medical issue. I think that’s bringing on some grief. I’m normally so independent, but I’ve just been feeling alone in the world.

I’ve been having dreams almost every night for the last week. I’ll be hanging out with my sister, or she’ll reach out to me, or she’ll send me a long text telling me she apologizes and wants to start fresh. I get to show her all the cool stuff I’ve done in the last year.

Then I wake up, and none of it happened, because they still hate my guts and consider me dangerous/incompetent. I almost want to reach out and just see what happens, but I know that’s a terrible idea. With my medical state, I can’t risk the stress anymore.

I guess I’m not really looking for advice…just folks who understand.

I found out I have an unusual form of epilepsy recently, after dealing with scary symptoms and a lot of chronic issues for years. I had medical PTSD already before all this, and talking about/living through medical situations is quite hard for me.

I also have multiple pet rabbits, who are a great comfort to me. I love rabbit plushies and rabbit decor - I’m not kidding when I tell you my entire house is decked out in rabbit items! 🙂 Needless to say, getting an ad for the Epilepsy Rabbit was very fortuitous for me!

It’s not going to cure me or anything, and I of course still have to deal with the hard work of treating my condition while caring for my mental health. But it’s a help for me to see this little plush rabbit who represents a big, scary problem. I know these are not meant for kids, but I wish I’d had something a bit like this during the medical crisis that caused my PTSD.

Thanks to the folks who created these plushies!

Hi! I have focal aware seizures exclusively with temporal lobe epilepsy. It’s been about 1.5 months since I got diagnosed. I’m on Briviact which seems to be helping (no seizures in a few weeks and only a few “funny feelings”), so now it’s just a matter of waiting to see if the pattern holds.

Talking to a counselor at my neurology clinic, she recommended that I get a medical alert bracelet. It’s the season when I do a lot of solo hiking/camping, and I’d asked advice on how to stay safe and prevent seizures with physical exertion.

My question is, has anyone here gotten a medical alert bracelet if they only have focal aware seizures? Like…I wouldn’t know what to put on there, besides the diagnosis. I don’t have a rescue med, and if I ever had a tonic clonic, I’d be as in the dark as to next steps as any random stranger around me. And I’m not super keen on carrying my diagnosis around with me (I’m worried about stigma).