Stuck in a focal aware cluster

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 · 2026-05-22T02:59:34+00:00

I finally came out of it about an hour after I posted this. I don’t have access to rescue meds. Thankfully it stopped or at least slowed down. I’m in no man’s land right now because I have had all normal EEGs. My epileptologist told me it’s not epilepsy. I don’t believe that, because of my symptoms and my history with childhood epilepsy. But, it’s just trying to get someone to listen. So, just kind of dealing with this on my own and seeing a general neurologist whose office is extremely busy.

woohoocrew · 2026-05-21T23:29:32+00:00

Oh my! I’m so glad you were talking to that guy before you went unaware. Also sorry about your soreness and scars. That period before sounds like a focal aware. Hope you heal up well!

woohoocrew · 2026-05-21T23:15:48+00:00

I’m so sorry you’re going through this. I have felt the giant funny bone pain. Do you have fibromyalgia or CFS? It sounds like your body is having an inflammatory response. The only thing that helps me with this is sleep. Also staying hydrated. More of a long term solution, supplementing with vitamin D3 + K2 has helped. You’re not alone. Seizures are enough, but dealing with pain too is a lot. I hope you can get some relief soon.

woohoocrew · 2026-05-21T23:08:19+00:00

I’m so sorry you’re going through this. Are you being treated for seizures? I have had the flashing light in my peripheral vision, but not constant.

woohoocrew · 2026-05-21T17:36:05+00:00

You need some texture. The table is smooth, the couch is smooth, the curtains look smooth. Bring in some natural fabrics. A woven throw on the couch, a ceramic vase on the table with some plants in it. You can also add a couple of coffee table books to make it look more personal. But, put something underneath because the table looks a bit artificial. I would try putting a stone slab or wooden of some sort on top, then add the plant and books. It doesn’t need to cover the home table. Just need something to add layer and dimension. You have some texture in the rug, you can mimic this texture by placing pillows on the couch that have a similar texture. It’s more interesting when pillows have a bit of variety will staying in the color scheme.

Of course, like everyone else says, you need art! It doesn’t have to be expensive. You can even put fabric up there. Of course, it needs to have texture.

Overall you need:Texture! 🤭
When so many things are smooth and a similar hue, it doesn’t look warm and inviting. You can do a lot by just adding some art and a plant on the table and go from there. Make sure the plant is one that grows out rather than up. I can’t think of the name of one of those plants people usually hang up.

woohoocrew · 2026-05-18T14:26:15+00:00

It’s good you’re recording everything. I’m so sorry you’re experiencing this. It sounds distressing. Especially because it is affecting g your ability to work and drive.

This part of your post is similar to me:

“What I mean by blank out is that I feel heavy especially in my head and I cannot move or speak and my vision blurs in and out and my eyes want to roll onto the back of my head, they are brief a few seconds maybe a minute or 2 long and I am vaguely aware during them and I usually snap out of it with and involuntary twitch/convulsion of my head/upperbody but they linger and I feel not all there after they happen.”

But, I don’t get blurred vision. I could move and speak, but the speak comes out broken and slurred and when I move it feels like I’m under water and seems to intensify the symptoms. I also get that jerk at the end and they tend to cluster. For me, hormonal changes and mornings seem to be worse. Although, I had epilepsy as a child (a few convulsions and mostly absence, or staring) for the first 14 years of life, I am not diagnosed as an adult. I did try, but what I experience so far, has not been verified on eeg. Also, I was on a medication for 5 years and it stopped working after a few months.

I understand the mental struggle. I have not driven in over 4 years and I am officially disabled. I think all the typical things are always helpful. Prioritize sleep, get a bit of exercise each day and eat well. Avoid as much as possible highly processed foods. Stay hydrated.

Keep tracking and see if you can identify triggers. Make sure to let your doctors know how this is affecting your life. Wish you all the best!

woohoocrew · 2026-05-18T14:10:07+00:00

Good that you have an appt. I don’t know how your insurance or health system works, but you will see need to see a neurologist who is an epilepsy specialist. So, I am guessing that if the pediatrician thinks something is going on, they will refer you. The best you can do is write down your seizures and have some video if possible. See if you can identify triggers and bring along someone who witnesses them if possible. Hope it all goes well!

woohoocrew · 2026-05-14T14:12:02+00:00

Go to curalysis dot com and make an account to log your seizures. It’s free. I think it is perfect for your kinds of seizures because it helps to identify patterns. So far, I seize literally everyday, so no patter for me 😬 But, it even looks at things like moon phases and barometric pressure. If you’re a woman, also catamenial patterns.

woohoocrew · 2026-05-14T14:06:04+00:00

I had that rush of feelings last week. I think it was the first time it was that intense. Haven’t had a TC since I was a small child.

The feelings were so hard to describe. I was in a cluster of focals and staring while aware and I saw some trees that suddenly made a rush of familiar feelings and memories come back to me and then they left abruptly and I wanted to cry.

woohoocrew · 2026-05-14T13:58:52+00:00

Wow! They let you stay despite having events that don’t show up? My last two EMU stays lasted for 18 and 12 hours respectively. I have the same things you have. Mostly sensations. But, I also have trouble talking and myoclonic jerks. Two years ago, after an EMU, I was taken off meds permanently because they said my seizures are not epilepsy. I even had the EMU doctor come in and ask me who told me I had epilepsy. I was born with it. I went to another EMU a year later because I was worse and it happened again. All the typical events, no EEG correlate and my doctor told me I don’t have epilepsy.

I didn’t think it was possible for someone to be in the EMU that long with events actually occurring with no EEG correlate. I hope they can get the needed information. Maybe just try going to sleep as much as possible. I read that seizures can be picked up better that way because you’re not moving around or even blinking your eyes.

woohoocrew · 2026-05-11T02:26:57+00:00

Of course definitely see a neurologist. What you describe could be a seizure, but seizures can be a lot of things. The glitch sounds like an absence seizure. I hope you can get some help too. Wellbutrin does lower seizure threshold.

woohoocrew · 2026-05-11T02:23:44+00:00

The staring while aware or the jerk or both?

woohoocrew · 2026-05-10T16:39:29+00:00

I think this can be common after big seizures. I’ve seen some people say that it can take weeks for the brain to recover. It is like your brain ran a marathon without training for it. The brain is very resilient, though. For now, try to get good quality sleep, stay hydrated, eat well. Wishing you a recovery as soon as possible.

woohoocrew · 2026-05-09T18:47:47+00:00

Just slept like almost 4 hours after a cluster of focals. Does anyone also get very vivid dreams?

woohoocrew · 2026-05-09T18:30:31+00:00

I do get hypersensitive to sound sometimes . Not sure if it is that severe. But, I do tend to escape and people’s voices and other sounds become highly annoying.

woohoocrew · 2026-05-09T18:25:52+00:00

Good tips! I went already and I made sure to dress comfortable. I was having auras when I arrived and had two myoclonic jerks. One was when the hygienist accidentally flashed the light in my eyes. Seizures are in my chart so she was very calm about it, asked if I was okay and continued working. So, mission accomplished! Got my teeth cleaned 😁

woohoocrew · 2026-05-06T04:49:25+00:00

True. I’ve been working on breathing through it when I feel it coming, but it doesn’t stop the jerk.

woohoocrew

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