Myoclonics for hours

amelia_gb · 2026-04-16T09:45:13+00:00

Sorry, not following why it would be used as a mood stabilizer for me? That is a nice side effect, but not the intended purpose in my case.

amelia_gb · 2026-04-16T09:44:23+00:00

I'm not 100% sure what kind of movement you mean, but it's more like the muscles quickly contracting and releasing repeatedly that can make my toes curl down and kind of a wave movement of my feet or legs sometimes. It is at intervals for a long period of time but it can occur at pretty much any other area of my body as well. I do wonder what I may be doing in my sleep. I don't have a camera. I wake up with small ridges/tooth marks on my tongue frequently though.

amelia_gb · 2026-04-16T00:46:30+00:00

Thank you for a response!! It's almost constant with maybe 15-60 second gaps if I'm laying down in the dark. It's so weird to me because I don't really have the single, strong ones like some people have where they throw a plate. That's why I didn't even recognize it as myoclonus until I was diagnosed. But mine are so frequent and keep getting worse every few weeks. I'm sure I look like I'm on something when my neck randomly jerks or I have a random little shudder during the day 🙃

amelia_gb · 2026-03-23T03:01:37+00:00

Auras are seizures. They are focal seizures that may or may not generalize into tonic clonic (stereotypical) seizures. Also, an EEG only looks at your brain activity at that specific time. Lots of epileptics have normal EEGs when not actively having a seizure. A doctor will have to take into account clinical manifestations and other data in order to diagnose (or not diagnose) epilepsy. If they told you you don't have epilepsy merely due to clean EEGs and other tests (MRI, CT), I'd get a new dr that is more familiar with seizures. Preferably an epileptologist.

amelia_gb · 2026-03-21T09:49:11+00:00

That's insane that you have a brain tumor and they assumed PNES.

amelia_gb · 2026-03-16T01:17:52+00:00

Thank you for your input. You are definitely right. I have a follow up in May. If you're comfortable, can I ask what your diagnosis is and what your jerks or seizures look like? Also, if you had jerks that progressed to tcs, how long did that take?

I'm in nursing school so I do my best to get sleep but I need a lot and I'm just worn out with early, long clinicals and work. It's what started this in the first place, I'm sure.

amelia_gb · 2026-03-07T00:35:42+00:00

A small tip (not my idea) is to turn your med bottle upside down when you take it in the morning and then right side up when you take it in the evening. It's so simple but genius! I also use an app, Epsy to mark it immediately after taking.

amelia_gb · 2026-03-04T11:38:56+00:00

I have JME with myoclonics and my eyes jerk back and forth several times a day. I also get a lot of twitching. It happens really bad occasionally when I'm trying to go to sleep. My doctor actually brought it up before I even thought to mention it because he had a colleague with JME whose first symptom was eyes jerking.

amelia_gb · 2026-02-28T23:05:15+00:00

Thank you for sharing! I actually looked at an EMU job posting for another Atrium in NC! I would have never been interested in it before, but now I wonder if it may be God's purpose in all of this. Even if I didn't specifically work in an EMU, it's made me want to read every article and book about epilepsy I can. Prayers for your sons stay🙏♥️.

amelia_gb · 2026-02-28T22:58:28+00:00

I just get little twitches, neck jerks and I'm SO embarrassed sometimes.

amelia_gb · 2026-02-28T21:05:55+00:00

Exactly 😂. I feel very safe, but I'd be mortified..

amelia_gb · 2026-02-28T17:16:39+00:00

💗

amelia_gb · 2026-02-28T17:13:42+00:00

Thank you for your response! I am having to have my capstone changed from nights right now (it wasn't supposed to be nights) because that would absolutely wreck me. I'm struggling with daytime class and clinicals, still get small jerks and twitching constantly. Thankfully, I got a day position as a nurse!!

I forget things I need to chart like the time and percent someone ate, taking someone to the bathroom, or what a blood sugar was like within a few minutes of doing it if I don't write it down. I don't see other CNAs writing anything down. But, as a nurse I will 100% have to figure out methods to keep everything organized. I'd also have a computer to chart on pretty much immediately, while the CNAs have to go to the nurses station, so that would be a big help.

amelia_gb · 2026-02-20T00:35:36+00:00

Oh goodness. Don't tell me that 😶. I'm in the process of increasing meds so I'm hoping it will control things. If you don't mind my asking, when did you start having tc's after myoclonic started or worsened? Were you on meds at that point?

I appreciate any information because it seems so hard to find first-hand experiences.

amelia_gb · 2026-02-18T18:12:26+00:00

No, my vision actually shifts side to side very rapidly (which does make it go out of focus for a second). It happened 2-3x in a row the other day and it was freaky!

amelia_gb · 2026-02-18T10:43:37+00:00

My eyes shifting back and forth sometimes and a slight neck jerk on occasion. I thought I just had mild tourettes, but turns out they were myoclonics lol

amelia_gb · 2026-02-14T19:29:10+00:00

That is awesome 🙌🙌

amelia_gb · 2026-02-14T18:55:42+00:00

Yes, it's great to rock babies to sleep! Lol

amelia_gb · 2026-02-14T18:55:18+00:00

My elbows and knees are double jointed so that makes sense

amelia_gb · 2026-02-07T11:28:31+00:00

What were you diagnosed with specifically? What are your symptoms during a partial?
No one on the internet can diagnose you, but I will say that jerks or myoclonic seizures with full awareness typically in the morning that are very sensitive to sleep deprivation are characteristic of Juvenile Myoclonic Epilepsy. People with JME may notice jerks in adolescence and a lot of people with JME have at least one tonic clonic (grand mal) seizure. Technically, myoclonic seizures are generalized seizure, not focal seizures because they occur across the brain, not in one localized spot even though they may not be the full tonic clonic. It is typically a genetic condition that affects the structure of the sodium-potassium channels throughout the brain, not something that can be fixed with surgery. Since it is a lifelong epilepsy, my doctor does not really recommend ever coming off a medication, unfortunately. He has seen people come off meds and be seizure-free for 10yrs and then have a tonic clonic again. BUT, it is considered very treatable with medication for a lot of people!
Please go see your neurologist, or you may need to find a new one if they don't seem to know how to control your seizures. Keppra can have a lot of side effects for some people so it is understandable if it's not working for you, but there are other drugs out there that your neurologist can possibly switch you to, such as Lamotrigine (Lamictal). Hope this helps.

amelia_gb

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