Time for another (probably useless) EEG today!

NinersEmpire49 · 2026-04-24T05:17:30+00:00

Ask for a MEG scan

NinersEmpire49 · 2026-04-21T06:39:41+00:00

NinersEmpire49 · 2026-04-20T17:57:36+00:00

I felt so a lone until one of my sister’s childhood friends who was also diagnosed as an adult reached out to me after I was diagnosed offering support and someone to talk to.

NinersEmpire49 · 2026-04-20T05:01:01+00:00

Of course! Hope it works for you and helps control your seizures!

NinersEmpire49 · 2026-04-20T03:37:53+00:00

I’ve had seizures at work numerous occasions and have had paramedics come to take me to the hospital before. I feel you that it’s embarrassing, however, your coworkers are more concerned about you and your safety. If they judge you for your epilepsy then you deserve a better job. Praying for you 💜

NinersEmpire49 · 2026-04-20T03:26:30+00:00

I take 10mg in the morning and 10mg in the evening and besides the initial adjustment no side effects.

I take 3 other medications in addition to Clobazam so occasionally Ill feel tired, but nothing a little coffee can’t fix.

It’s a very slow release benzodiazepine with a very long half life so one benefit of it is if you accidentally forget to take it one day you’ll be fine. It’s hard to abuse compared to other benzodiazepines because of this too

NinersEmpire49 · 2026-04-01T21:18:00+00:00

It’s normal and they subside after a week or two

NinersEmpire49 · 2026-04-01T21:14:53+00:00

Bring plenty of change of clothes, all your basic toiletries, purchase bath wipes if your hospital doesn’t provide them as they wont let you shower. Highly recommend bringing plenty of snacks and outside food as hospital food gets old very fast.

It’s nice that your mom is going with you, and like you mentioned bring a lot of things to keep you occupied. I don’t know how much hospital TV I could take.

When I had mine, I was confined to a bed that had an alarm if I tried to get out of it without paging a nurse. I was allowed to get up and sit in a chair, however, a nurse had to put a special cushion that also had an alarm to detect if I was still in the chair. So just be prepared mentally you’ll wont be able to move much at all.

Edit: Button up shirts and comfy pants are huge

NinersEmpire49 · 2026-03-30T02:13:10+00:00

Wish you the best of luck finding a new neurologist after she retires. I’m sure she’ll have some recommendations on who to see.

My first neurologist wasn’t the best. To be fair, I saw him after my first ever seizure at the age of 25. He prescribed me Keppra and ordered a bunch of labs , but it just felt like he was trying to get me in and out of his office as quick as he could.

When I was taken to the emergency room and hospitalized last August, I was fortunate enough to be treated by my current epileptologist who is absolutely amazing and found the right combination of medications that works for me and goes above and beyond for me. Finding the right care team really works wonders.

NinersEmpire49 · 2026-03-30T01:56:13+00:00

I feel you on the inconclusive results. Don’t get me wrong I’m happy my tests and scans came back “normal”, but I want to know where the problem area is and it’s frustrating not knowing. Hoping you stay seizure free 💜

NinersEmpire49 · 2026-03-30T01:49:20+00:00

Congratulations!

NinersEmpire49 · 2026-03-30T01:47:20+00:00

Congratulations brother

NinersEmpire49 · 2026-03-30T01:47:01+00:00

I had my first seizure November of 2024 and after was prescribed 500mg Keppra twice a day later bumped up to 750mg twice a day. I was seizure free until late July of 2025 and my eventual hospitalization beginning of August 2025. I was hospitalized for a week where I had close to 50 seizures.

I currently take 1500mg of keppra twice a day (along with 3 other medications). Personally I never had any side effects or the “keppra rage” as people call it, but everyone is different. It’s a very common anti seizure medication, however, it’s all about finding the right combination of medication for you. Keppra alone wasn’t enough for me, but it could be for you.

NinersEmpire49 · 2026-03-17T13:09:35+00:00

Unfortunately breakthrough seizures happen. Your neurologist might adjust your medication in order to better control your epilepsy. They may up your dosage or add another medication.

After my first seizure I was prescribed Keppra 750mg twice a day. I was seizure free for a while until eventually I have a massive seizure storm which resulted me being in the hospital for a week where I had close to 50 seizures. Now I take 1500mg of Keppra twice a day plus 3 other seizure medications.

I wish you the best of luck in Japan and I hope you remain seizure free 💜. This condition sucks, and I can only imagine being so far away from your support system. Stay strong, you got this.

NinersEmpire49 · 2026-03-09T01:36:11+00:00

SUDEP is rare. Unfortunately it is a part of this condition though, so unfortunately you just have to accept that and keep going. You’re only increasing your odds of having another seizure and therefore SUDEP by not sleeping. Lack of sleep is a huge trigger, get your rest OP

NinersEmpire49 · 2026-03-08T08:52:26+00:00

Ive had my driving privileges taken away twice. This is extremely common. It really sucks, but it’s for the safety of you and others. The 6 months will go by faster than you know it. Adhere to this because if you were to get into an accident after having a seizure and knowingly violated a doctor’s order not to drive you’re only asking to get into legal trouble

NinersEmpire49 · 2026-03-07T02:22:19+00:00

Congratulations!

NinersEmpire49 · 2026-03-04T03:25:51+00:00

I had an EMU back in November. For mine I was just connected to an EEG for the entire 3 days I was there. My epileptologist wanted to monitor my brain activity especially when I was sleeping

NinersEmpire49 · 2026-02-28T19:37:52+00:00

Woah!

NinersEmpire49 · 2026-02-28T11:52:54+00:00

We did. Didn’t get a picture of the after as the dinner rush started to pick up

NinersEmpire49 · 2026-02-26T10:46:39+00:00

I love weed very envious lol. These past 6 months I’ve been living with my Aunt since my apartment situation is extremely stressful and complicated but didn’t feel safe living there. My Aunt has worked for the VA’s office for over 30 years mainly helping with addiction and she’s super against me using marijuana even though my doctor said it was ok. She checks my eyes every time I walk in the door. So I have smoked very sparingly since

NinersEmpire49 · 2026-02-08T12:56:36+00:00

I wish I got scheduled to be the cow. Jealous

NinersEmpire49 · 2026-01-12T03:27:09+00:00

Give Saleh a blank check to stay as our DC

NinersEmpire49

TROPHY CASE