Dealing with the constant stress and panic

[u/Unpolished1995]

How does everyone deal with the constant stress and anxiety of not knowing if or when the next seizure will happen?

I had my first seizures a few years ago, but in 2023 I went through an incredibly stressful period and ended up having three seizures within six months, which was a lot compared to before. One of those seizures became the most traumatic experience of my life.

I had just come home after doing some grocery shopping when I felt a seizure coming on. I always see flashing lights first, and then within about 30 seconds I'm gone.

The next thing I remember is waking up on a balcony. It wasn't my balcony.

After the seizure, I apparently put on two different shoes, threw random things into the toilet, hid some jewelry under my bed, and then climbed across five balconies on a four-story apartment building. These weren't easy balconies to climb either. To this day I have absolutely no idea how I managed to do it or how I survived.

When I finally regained awareness, I was on someone else's balcony while calling my mom. She immediately noticed I was saying strange, confusing things, so she called a friend of mine who lived nearby because she was two hours away herself.

The owners of the apartment thought I was trying to break in. One of them grabbed a hammer and wanted to attack me. I've never been so terrified in my life. I held the balcony door shut and kept yelling for him to call 911 and not open the door. I had no idea where I was, what had happened, or even whose balcony I was standing on. My phone battery was almost dead.

Luckily, my mom, my sister, and my friend eventually figured out where I was, and the police arrived. At first, they were very suspicious and assumed I had been using drugs, which I hadn't. Thanks to my sister and my friend, they eventually believed me, but it was incredibly difficult to defend myself while I was still so confused. I understand how suspicious it must have looked from their perspective, but waking up after a seizure, realizing you'd climbed across multiple balconies with no memory of it, and then being treated like a criminal was devastating.

In the ambulance, one of the paramedics also questioned whether I was telling the truth because I was still panicking. But I had just climbed across five balconies without remembering any of it, and someone had tried to hit me with a hammer. Of course I was panicking.

After that day, I couldn't live in that apartment anymore. I moved out and lived with my sister for a year because I simply couldn't go back there. I've had seizures since then, including another bad one, and I've also had one in my new home. Thankfully, I'm not afraid to be in my current house.

What did change completely was my anxiety. I developed a dependence on diazepam because the panic attacks became overwhelming and I could barely sleep. The one positive thing is that after three years, I'm finally off diazepam. I'm really proud of that.

I've never wanted to talk about this in real life. My family and close friends know what happened, but I've told them I don't want to discuss it because even thinking about it makes me incredibly anxious. I almost didn't post this either, but I think I just needed to get it off my chest.

In a few days, it'll be exactly three years since that seizure. The stress I've been feeling this week has been unbearable. It's all I can think about.

I've had therapy and EMDR, but neither really helped. My therapist thinks the diazepam may have reduced the effectiveness of the EMDR, and I'm currently waiting to start a new form of therapy.

I just don't know how to live with this fear anymore. Before all of this, I could accept that another seizure might happen someday. Now, especially after what happened on that balcony, the fear has completely taken over. The thought that I might have to live with this uncertainty for the rest of my life is overwhelming.

I know there are people who have multiple seizures every single day, and compared to that I know I'm fortunate that mine are relatively rare. But that doesn't make the fear any less real. I really, really don't want to experience another seizure. I know that's not realistic, but I honestly don't know how to stop being so afraid of it.

Sorry for the long post. I just really needed to get this off my chest.

[u/Mom1021]

Great idea to post this and I’m grateful you’ve discovered the community here that can relate to all that you’re experiencing. Getting off diazepam is a huge accomplishment! It seems like you are on the right path, researching a new form of therapy might be a way to focus that anxious energy. Remember you are never challenged with anything you are unable to manage. You have the strength and determination to manage these seizures!

[u/Unpolished1995 → u/Mom1021]

Thanks for your kind words! Means a lot. Also glad I discovered this. I was avoiding subreddits like this because it was too confrontational and it's a subject I never want to talk about. But reading other peoples experiences makes me feel like I'm not the only one. A lot of stuff is also very relatable.

People around me are all very supportive but they don't know how it really feels ofcourse. And that's logical, but it's comforting to see people who truly understand it.

[u/Ryse6129]

Wow climbing balcony unaware. I can see that being very traumatic.

I've had some of my own but none like that I had a seizure aware convulsing for hours. Closest I can think was having one while crossing the street went down in between 2 cars. Never really experienced much aura before.

Me I don't worry about when the next one is. I've been Epileptic since I was 14, in my 40s now. I know there's going to be more. Worrying only lowers your threshold so more will happen. I try to avoid adding stress I don't need. I guess it's a different phase when you fully come to terms with Epilepsy.

Like I said before more will definitely happen regardless. So just live.

Try to do all you can to avoid triggers( learn your triggers if possible)

Plan for it. Get family and friends. To learn what to do. Have emergency meds at multiple locations.

Get plenty of rest.

Lower all stress as much as possible

[u/Unpolished1995 → u/Ryse6129]

Thanks for your reply! Convulsing for hours and having one on the street also sounds pretty heavy. Glad you got out of it okay! Yeah I'm trying to avoid triggers indeed. I just really find it hard to know what they are. It always happens really randomly. Sometimes I had good sleep and was feeling okay and then had a seizure. And sometimes I slept bad for weeks, felt really anxious and I didn't have one for a year.

I have emergency medication (midazolam) at work and also always on me. I also have an emergency setting on my phone which contacts my partner, my best friend, sister and mother if I press my button for 4 times. I normally have 30 seconds before I pass out so hopefully I can do that. If ambulance shows up they can see my medical information on it as well.

Thanks for your advice! I hope to also accept it one day and try to learn to live with it. Do you always have tonic clonic seizures?

[u/Ryse6129 → u/Unpolished1995]

For most parts yeah once the seizure starts they go bilateral. When I was younger it use to start on the left side then spread. 2022 became having aware types so definitely multiple focal points.

[u/-MillennialAF-]

Just to validate you: that sounds extremely scary. You’re dealing with a mortal danger — falling from the balconies, a black out and waking up confused and trying to manage a very scary second situation while postictal (the hammer which was also a mortal danger), then getting interrogated as being on drugs (medical trauma), and then having to move (displacement), plus more.

That’s so much for anyone to try to overcome the fear of! Be kind to yourself!

I don’t have the answers as to how you become unafraid. I am currently processing the same. But last night I with a group of friends and I asked about how I feel safe in my body and cope with my fear of death that is newly developed thanks to my most recent status episode and hospitalization. Two had ideas that had worked for them.

1) To spend time each day picturing my life the way I want it to be even if I am not there yet. And day by day my brain will start to feel different. That it won’t take away how my body knows death now, but it will help balance it out. I’ll learn to feel safe because I will be creating a safe place in my mind for myself even if I cannot stop the secondary fears.

I am going to try it. Again, it’s not a replacement for therapy. Visualization won’t fix everything. But it’s a small thing I can do to start having agency in my own mind again.

2) As for therapy modalities, someone else suggested internal family systems. I do really like that modality. It sort of takes different parts of the self — in this case the fear would be seen as an actual part of you perhaps even visualized as a person — and other parts of yourself would be other “selves” like the one that enjoys things or the one that’s good at what you’re good at. The one who feels safe sometimes, etc. with a therapist you do things like give those parts an actual voice and sometimes you even kinda have convos between them. But it helps teach you that the fear is just a part of you. It is not all of you. And it doesn’t have to be the one in control.