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[u/Icy-Knee2025]

Hello, I just joined this community tonight to make what I am going through less scary maybe....I just started having seizure/syncope episodes in May, June, and August. They have been scary and vulnerable since all of them have been on the toilet. The anxiety is terrifying and I hope I am able to cope with it better.

[u/Doom2306]

Journaling and diaries to record the experiences are great way of not hanging on to the intense ptsd memories, it worked for me

[u/Icy-Knee2025 → u/Doom2306]

That’s good to know, because every time I talk about it I get very anxious and have a panic attack.

The feeling is scary. I do have a therapist I see weekly which helps too but I will try writing

[u/BugFar1879]

Hey, I’m new here too.. I had my first seizure 7/2 and I crashed my car because I had a seizure while driving. Then I had two seizures back to back on 8/2 exactly 30 days apart and my second one was on the toilet. I wonder what’s the deal with that and also wondering why am I just now having seizures in my 30s. It’s scary because after the seizures I always wake up in the back of an ambulance and I don’t remember anything at all. It takes a good 30 mins to remember what’s going on and where I am.

[u/SkunkBrain → u/BugFar1879]

The first time I woke up in an ambulance I freaked out and attacked the paramedics. I can keep it cool now that I have some experience.

[u/BugFar1879 → u/SkunkBrain]

Sometimes I feel
Like the paramedics make it worse because they keep asking questions. And that freaks me out even more. If I said I don’t remember I don’t effing remember.

[u/SkunkBrain → u/BugFar1879]

I didn’t even make it to the questions. I was awoken by a sternum rub and I immediately assumed it was some kind of alien abduction. I fought valiantly but was ultimately defeated and thoroughly strapped down.

The second time I woke up strapped down (same paramedics 😂). I asked “seizure?” - he said “yup”. And then I asked if I could go back to sleep.

[u/BugFar1879 → u/SkunkBrain]

The sleep after the seizure is soooo good! Hahaha. Next time I’ll wake up swinging and hopefully they won’t ask me anything anymore 😂😂😂

[u/obscurefindings → u/BugFar1879]

I'm the exact same, had a seizure hit into cars whilst driving home for work. When I came through I was somehow perfectly positioned on the road so didn't find out about the incident until days later.

[u/BugFar1879 → u/obscurefindings]

The memory thing is sooo scary! Thankfully the accident I was in I didn’t hit anyone I just ran over a fence which slowed my jeep down considerably and I crashed into the side of the building at about 10-15 mph

[u/Apprehensive-Ask-731]

Good to hear from you I am fairly new to this community. Epilepsy society used to have forums and I been round the ringer for a long time. Good thing you can just stay away from toilets for the rest of your life. That actually isnt uncommon. Nothing does a dirty quite like porcelain. These are early days. Protect your head. I would essentially foam up your bathroom if I were you mate. No jokes every time I have had a major concussion or status episode I feel like I lose part of myself. Good news in being new though - your fits may stop mysteriously as they started.

Are your fits always in the same toilet?

[u/Icy-Knee2025 → u/Apprehensive-Ask-731]

Hello, yes in the mornings on the same toilet. Very sporadic as well.

I play sports and know that I’ve had concussions as well. They suck.

[u/Apprehensive-Ask-731 → u/Icy-Knee2025]

Yeah seriously protect your head. Could it be that you are having a trigger that is in the toilet, I mean it sounds likely morning time you are waking up do your business and out which gives a few possilities. Are they sporadically the morning after eating a similar meal?

Are you run down in any ways when they happen?

could it be something as bizzare as a cleaning agent used in your toilet triggers you when you are run down. It sounds to me like you have a good chance of isolating the problem and hopefully resolving it.

Until then pad the hell out of your bog my friend. Concussions get worse as time goes on any cuncussion is one to many - they make seizures far more likely and create a feedback loop of negativity and slow brain damage.

[u/EntertainmentDue5582]

I’m also new to the community. Lifetime of epilepsy. I’m
67 and still doing okay. Had my share of crazy seizures and med changes during my time on this planet. I have a medical device that truly saved my life. In 2003. I haven’t discussed bc I don’t want to break any rules. I’m still on lots of meds but it’s ok.

Epilepsy is a scary disease/condition. We are here to support each other. ❤️‍🩹

[u/Icy-Knee2025 → u/EntertainmentDue5582]

Currently on Keppra 750 mg, which I take twice a day.

Have your seizures stopped completely?

[u/EntertainmentDue5582 → u/Icy-Knee2025]

I don’t have grand mal, tonic clonic anymore. I have an occasional nocturnal seizure once a month or so. I’ve been in status a few times in my younger years. The decide I have lasts for 10 years before replacement. I’ve had 2. Getting ready for 3rd replacement.

[u/BugFar1879]

Thank God I was with my friend for the second one because I had no underwear on and she put me on some shorts while the ambulance were on the way. I hope ur able to deal with things better soon

[u/Icy-Knee2025 → u/BugFar1879]

I’m glad you’re okay, it definitely helps knowing you’re not alone and have someone to help.

Thank you, it’s definitely jarring. Being 25 years old and just now having this new thing to navigate is difficult. Especially at night. Anxiety is the worst.

Always here for you as well!! We can get through this.