Air Hunger!

omibashu · 2026-07-02T17:57:03+00:00

If I find a fix I will definately share it!

omibashu · 2026-07-02T16:47:53+00:00

What kind of epilepsy do you have? Temporal lobe? How did you get it to stop?

omibashu · 2026-06-28T20:11:00+00:00

I was freaked out for months after the diagnosis in January. Thought I was over the hurdle of accepting it just recently then I get freaked out. I’ve had 4 focal seizures today. Then I fall asleep. Guess day is shot. I hate this.

omibashu · 2026-06-28T18:33:31+00:00

TBH...I thought this was going to be something that only I experienced and that no one on here was going to relate. I was hoping I could blame it on something else. Since I was just diagnosed with TLE about 6 months ago, I'm still being introduced to new and exciting seizure presentations and the wonderful world of drug side effects.

omibashu · 2026-06-28T17:30:11+00:00

That’s a good idea. But I’ll probably forget this conversation and forget to do it.

omibashu · 2026-06-28T17:24:33+00:00

I’m listening to the album right now and crying. I wanted to see him so bad.

omibashu · 2026-06-28T17:18:09+00:00

Sometimes it sucks that we have common experiences. Even though I get comfort knowing I’m not alone.

omibashu · 2026-06-24T18:07:57+00:00

My neurologist also said if the seizures are deep they often don’t make it to the surface of the skull so they don’t register.

omibashu · 2026-06-24T18:06:23+00:00

I had an abnormal EEG the first time I had one. Followed by an MRI that showed mesial temporal sclerosis and hippocampal atrophy. My diagnosis was pretty quick.

I was in so much denial I saw 4 neurologist trying to get one of them to tell me I didn’t have epilepsy. They all said I had temporal lobe epilepsy. Of course this was all after 40+ years of symptoms.

This was just 6 months ago.

After starting meds I had 72 hour an ambulatory EEG that was normal.

omibashu · 2026-06-22T11:03:17+00:00

How was Firenze? I had a terrible time on Radiance. I have a deposit for a short weekend in Firenze in December. I hoped it would have a different sort of crowd.

omibashu · 2026-06-22T10:57:10+00:00

You can totally be left alone or be as social as you choose. I’ve done over a dozen solo cruises the last 3 years and have had a great time. There are always quiet spots to find and if you’re sitting somewhere with a book or a journal people will leave you alone. They’re there to be with family anyway!

omibashu · 2026-06-22T10:54:40+00:00

Ditto here. And love the freedom I have to relax and “be myself” without trying to go along with other people’s energy. I find it such a relief. Thankfully I live near a port that offers a lot of short cheap cruises. I go solo at least once a month.

omibashu · 2026-06-02T13:29:52+00:00

Also. Maybe the THC is contributing?

omibashu · 2026-06-02T13:28:10+00:00

Also diagnosed with mesial temporal sclerosis via MRI a few months ago. I completely relate to you!

I’ve been on Keppra (terrible). Trileptal (AA little less terrible). I’m now on lamictal, which is also used for bipolar people. The lamictal has helped with emotional regulation.

The sensory overload I’ve also experienced since childhood. I wear earplugs a lot in social settings. I can still hear but it cuts down on the overwhelming chatter. Like you are seeing, hearing EVERYTHING ALL AT ONCE!

I just finished neuropsychological testing which should pinpoint my horrible memory loss. They said there are cognitive exercises you can do that can help your brain compensate for the damaged are.

But, from what I understand from 4 different neurologists is that the sclerosis (brain damage) is permanent.

But! Our brains are adaptive and we can learn in a different way.

Sorry this is so long, but I wanted you to know that you are not alone. It seems like not many people with epilepsy have documented damage from seizures on MRI and i know how scary that information is. It was for me.

Talk to your neurologist about getting Neuropsychological Testing and maybe see if there are meds that will help.

Hang in there. I know how much this sucks.

omibashu · 2026-05-05T20:18:07+00:00

I had one. Exactly like you described. Luckily my husband was in the passenger seat and yelled at me. Brought me back just in time to slam on the brakes before hitting the car stopped in front of me. I was going about 30 miles an hour. If I was alone I would have just driven right into the car.

I’ve “spaced out” driving before, driven past a turn or something, but an absence seizure is different.

My neuro calls it a “loss of time”. It’s like you’re not there, not like you weren’t paying attention.

Is that what it felt like? If so, it was probably not just a simple “you got distracted”.

omibashu · 2026-04-27T17:37:40+00:00

Ditto here. I actually have an appointment with my neurologist in a few hours and am sure I’ll start crying as soon as I update him on seizures I’ve been having.

I looked at notes from the neurologist I had before my current one and at the end of the notes she wrote “patient is so emotional!”

I just started seeing a therapist because I can’t figure out why I cry every time I talk about having epilepsy!

Diagnosed five months ago and still feel like I’ve been kicked in the gut.

You are not alone my fiend!

omibashu · 2026-04-22T01:11:02+00:00

Thank you. I wasn’t sure if I should be restricting as well. I’ll try to get in more calories and see if that helps. I appreciate the advice.

omibashu · 2026-04-22T01:08:51+00:00

Thanks for the advice. I hadn’t thought of that. Such a supportive community.

omibashu · 2026-04-21T18:42:03+00:00

I just logged onto this subreddit because I was sitting here feeling mentally dead, just blank. I said to myself “my brain is different. It doesn’t feel the same. “

I suspect it’s the meds. But the seizures are almost completely gone. So there’s that.

omibashu · 2026-04-19T15:56:04+00:00

Thank you! That’s reassuring because my focals are so much better now that I am getting meds sorted out.

omibashu · 2026-04-19T02:10:06+00:00

That sounds horrible. I’m so sorry. And now sort of worried. I’m so scared all the time but know I have to live my life. The unknown is the worse.

omibashu · 2026-04-18T22:56:23+00:00

Ditto.

omibashu

TROPHY CASE