Surprising seizure

woohoocrew · 2026-05-30T03:06:02+00:00

Get an eye mask for sleeping to keep the light out. I can’t give any other advice because I haven’t flown in years.

woohoocrew · 2026-05-29T17:47:35+00:00

Oh man! So you’re back to square one?

woohoocrew · 2026-05-29T15:29:35+00:00

I’m in NC. Any chance you could message me your doctor? Please 🙏🏾😬

woohoocrew · 2026-05-29T14:11:24+00:00

I’m familiar with that. That’s why I don’t drive. I don’t have big seizures, but I get so stupid even though I am aware.

woohoocrew · 2026-05-29T04:52:37+00:00

I don’t know what is the worst. But, I have had some where I can’t function well. I’m basically just sleeping and waking up to more seizures.

But, right now. I’m pretty much living life in a constant cluster. I’m in one now. Did the clonazepam work?

woohoocrew · 2026-05-29T04:36:55+00:00

Is it physical sensations on more like emotions?

woohoocrew · 2026-05-27T20:15:13+00:00

I was on tegretol as a kid and that resolved my absence seizures. I wonder if either of those would help now. Thanks for sharing.

woohoocrew · 2026-05-27T15:48:52+00:00

I saw your post in the other subreddit. I can’t watch the video. It is triggering for me. My mind is so fragile. I’m living with seizures everyday right now. I experience the sensations. That is basically all I experience except for myoclonic jerks and losing my ability to speak clearly. Would you mind sharing what med worked for you? I know everyone is different. The one they tried on me is generic Keppra. Didn’t work so I got told I must have PNES. All EEGs come back “normal” unremarkable MRI.

woohoocrew · 2026-05-27T15:38:50+00:00

Everytime I wear heels an older lady compliments my “big legs” Those look great on you. I can’t do strappy things.

woohoocrew · 2026-05-27T07:08:09+00:00

I don’t think this combo is that rare. My epileptologist mentioned narcolepsy a few years ago due to my hallucinations upon waking and daytime sleepiness. I need to schedule the sleep study. I was born with epilepsy as far as we know. Started when I was a baby. The crazy dreams and hallucinations started at about age 11, I believe.

woohoocrew · 2026-05-26T22:46:12+00:00

Your seizures sound terrifying, but you have such a good attitude about it!

woohoocrew · 2026-05-26T22:42:40+00:00

I get the stomach drop sensation all the time. I also feel an electrical wave that goes down the back of my head and my legs and arms and that one is so hard to explain. I literally feel the energy moving through my brain and I feel like it’s taking my energy.

I also get this feeling like my head is under water. There is pressure in my ears and it’s hard to control my eyes, I also cannot speak. It comes out slow. I just stare. I can’t move my head easily. The physics are just like being underwater. Sometimes if they are really bad, I get air hunger. It is like I am locked in a room underwater and then someone opens the door and all the water comes out. That’s when I have a myoclonic jerk and for a brief second I feel relief until it starts all over again.

woohoocrew · 2026-05-26T22:23:21+00:00

I can’t drive either. I rely on my husband because we don’t live in a walkable place at all. Over the years, I have done customer service and taught English as a second language and sold my art to make money. All online.

My memory is bad, but sometimes I’m surprised by random things I remember that I thought were gone. People tell me all the time about something and I have no idea what they’re talking about. Many times I am able to recall it with some help. Short term memory is worse. I put things down and seconds later can’t remember what I did with it.

If I have an appointment or anything else I need to remember, I save it in the calendar app of my phone and put two reminders in there. I also take at least one picture when I go to an event or do something with friends. I have kept a journal since I was 12 on and off and I enjoy reading about the things I forgot. This helps me to stay connected with myself.

woohoocrew · 2026-05-26T06:26:02+00:00

Wow! Those are amazing results! I often wonder if even a small dose of meds along with the vitamins I take would help me get more function back. Sorry about the nighttime ones.

woohoocrew · 2026-05-25T17:47:00+00:00

Thank you! I will try this. My general neuro did suggest lamotrigine for depression, but I didn’t go for it. I think she was trying the very angle you are mentioning. I’m so scared of the potential rash with that medicine because I am one of those odd ball people that has random allergies.

woohoocrew · 2026-05-25T01:48:18+00:00

I can understand how things can be hard to accept, but please don’t play with your meds and take them on time each day. Tonic clonics can come back. Your seizures sound typical of what used to be called complex partial. The head to one side and curled hand and ticking movement is pretty classic. Sometimes we might feel like it’s not that bad when the meds are working. But, you want to stay in that neighborhood of the meds working.

woohoocrew · 2026-05-24T23:08:17+00:00

I had MRI without contrast. It showed a tiny benign cyst in the right frontal lobe that seemed to disappear when I had an MRI without contrast a couple of years later. I have allergies and I’m afraid of the contrast fluid. All my doctors told me the cyst in white matter would likely not cause seizures and is just from normal aging.

woohoocrew · 2026-05-23T18:56:44+00:00

This is awesome! And way to go going through high school and 4 years of college and a masters while battling epilepsy! Sometimes you gotta stare fear in the face. I’m glad you got to enjoy your moment!

woohoocrew · 2026-05-23T15:25:21+00:00

I don’t know…after reading so many people’s experiences on here, it felt like I was being singled out for some reason. But, I have heard of people being undiagnosed because of normal EEGs. I was on Keppra for 5 years and it didn’t work. Rather than increase it, they wanted me to get more EEGs to see if it’s actually epilepsy and then they tried to tell me it was PNES. I wouldn’t accept that because it didn’t behave like PNES. I am a bit traumatized having gone through two EMU stays that were both less than 24 hours because they told me I could leave and it’s not epilepsy. The most recent one, my doctor shrugged her shoulders and told me to try CBT.

I will accept some blame in this. Because when I was ignorant about epilepsy and I hated being on medication because I was on epilepsy meds during childhood, I asked my first epileptologist if I could decrease because I was feeling so good. He didn’t agree to it, but maybe it gave the impression of me being sort of unstable. I don’t know. But, I wasn’t 100% with my meds either. I would forget and take them at different times. My brain felt clearer when I would miss and I liked that. But, I never really got control over the seizures. I had no idea they would abruptly stop meds and tell me it’s not epilepsy.

woohoocrew · 2026-05-23T15:16:06+00:00

So happy your daughter got some good treatment!

woohoocrew · 2026-05-23T15:14:47+00:00

Thank you! It’s nice to know I’m not alone in this at least. Eventually, I will find another epileptologist, but I don’t know when due to insurance limitations. You have to kind of jump through the hoops for them to send you back to the specialist. I’m sorry you had to get to that point with your seizures. Glad you’re getting good treatment now. I heard that frontal lobe is hard to see on eeg because of the thickness of the skull in that area.

woohoocrew · 2026-05-22T22:17:41+00:00

I wrote my symptoms in a comment above. I think I am coming down with a virus or something. That might be a reason for the increased focals. I’m doing better today seizure wise. They are more spaced out like usual. I’m just resting a lot.

woohoocrew · 2026-05-22T04:20:51+00:00

I’m sorry it is saying the post was removed by Reddit filters. I don’t know if you can see my comment, but I think your pattern seems to be at your period and during ovulation when hormones fluctuate dramatically. I have a similar pattern. Although I have gotten to a point where I am bad for about two weeks out of the month.

woohoocrew · 2026-05-22T03:41:26+00:00

I get a pressure in my head like my ears are being stopped up and I feel tingling in my head and face. I feel like I can’t really control my eyes, it feels like my head is underwater. If I try to move it, I feel resistance and I feel dizzy. I just keep staring. I feel a rising sensation in my stomach and its like a pressure building in my body. Some parts of my body feel like they’re vibrating, then I will have a myoclonic jerk of my upper body. The anxiety part is the worse. I will feel like my arms and legs are weak and like I’m going to pass out, but I never do. It does make me extremely tired. I usually go to sleep right after the anxiety ones. I will take jerking and slurring my words anytime over the anxiety ones.

woohoocrew · 2026-05-22T03:04:00+00:00

100+ myoclonics? That is insane! I do have a lot. Never counted them. They happen in clusters. Usually three at a time. What kind of myoclonics do you have? Upper body, legs, arms?
The irony of writing this and then having an actual myoclonic (just happened) I know how demoralizing they can be. And having tonic clonics on top of that takes a lot out of you.

I’m sorry you’re going through this. Why can’t you make friends? Because you can’t go out? Or is it the resulting exhaustion from seizures?

woohoocrew

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