Newbie with possible focal motor seizures

[lizzyb831]

Hello all! I'm Liz from Monterey, CA and in the process of getting a proper diagnosis of what has been going on with me.

Since December of last year, I have been having what I could only describe as seizures - uncontrolled upper body movement, disorientation, and unable to stop the movement.

First time it happened I was in the movies, chick flick, so no crazy lights or anxious scenes. Didn't know what it was and freaked out by it of course. Didn't have another one for another month or so before heading to work. Then another month of having one while I was asleep, waking up and having an "episode" and once a month after, until June-ish when they became more frequent.

They tend to happen at night, always the same movement - twisting around to my left, twitching, clenched left hand, clenched jaw, disorientation. Sometimes I would have 2 during the night, and sometimes when I took naps in the afternoon. When having them, I wake up, am aware that I am having one, I still feel lost, but can't stop it. I haven't had any that were during the day where I was awake since the first 2, they're always while I'm asleep. Since I am asleep, it seems like I feel lost in my dream and the disorientation. So I guess that would be one of my "auras". When I am awake, I sometimes feel that disorientation and kind of displacement where I feel kind of away from everything or my body and feel anxious.

Finally got up the nerve to see a doctor last month who didn't know what it was, referred me to a neurologist who first thought it could be some kind of focal motor seizure when i described symptoms. MRI and blood work didn't show anything "off" - luckily no crazy brain tumors or anything that is causing these. Waiting for them to schedule an EEG, which they were supposed to do with the MRI

When reviewing MRI results, Dr. couldn't place anything still and even said I might have nocturnal myoclonus (restless leg syndrome)...? But couldn't figure out more until EEG scan. He did prescribe .5 mg clonazapam to take at night and started taking them about a week and a half ago. Went 5 days without an "episode" but have had 3 now. They haven't been as intense, but still having them.

Hoping to get more insight and information, especially the medication, from people and other threads as I continue to go through these tests and appointments.

Long intro, so thanks for reading

**HELLO EVERYONE!!!!**

 

[giveasmile]

I'm new here too and know how frustrating it can waiting around for doctors. Just know that you found a wonderful place to get support and information.

My issues are always wore when I am really tired or just falling alseep or during sleep so I related a lot to your post. I hope that whatever the problem is all better for you very soon.

 

[Nakamova]

Hi lizzyb831, welcome to CWE!

One thing I'd suggest while you're waiting for the official diagnosis is that you try taking a magnesium supplement (assuming there are no contraindications for you) to see if it helps. Magnesium citrate is a form that's available at the drugstore, and is well-absorbed. In addition to being neuroprotective, magnesium can help regulate tension in muscles, and can often help with things like myoclonus, cramps, and even heart issues (since the heart is a muscle). Worth a shot. You might also cut down on caffeine (if that's part of your diet), and make sure you're getting enough iron.

It might also help if you keep a detailed diary tracking your symptoms and any factors that may be contributing -- it could be fatigue, or something dietary (like MSG or aspartame or caffeine) or hormonal (thyroid or estrogen), or stress-related. A wide variety of physical, physiological, emotional, and environmental stressors can all play a role. Sometimes you can find a pattern, or a particular secondary trigger that you can then avoid.

Best,
Nakamova

 

[qtowngirl]

When reviewing MRI results, Dr. couldn't place anything still and even said I might have nocturnal myoclonus (restless leg syndrome)...?

Hi lizzy, welcome!
Just my two cents but if it were me I would highly argue that. I have focal epilepsy and my mom has really bad restless leg syndrome. Nothing she describes is anything like what you describe. Partial and complex seizures do tend to play out the same every time, as you said. And there is an actual type of E called Nocturnal Epilepsy, only happens during sleep or while you're falling asleep/waking up. Sounds very familiar.
And from anything I've been told or read of RLS the jaw doesn't clench and there isn't jerking to one side.
I'll be very interested to see how your diagnosis turns out, pls keep in touch on here, and fingers crossed for you that your docs get it right!!!

 

[lizzyb831]

@giveasmile - Welcome too! Yes, the waiting for appointments and scheduling times are very frustrating
@nakamova - Thanks for the magnesium and iron info! I do drink a lot of coffee/redbull and deal with stress :/ I've been tracking the times when I have them on my phone calendar to try to figure out a pattern since it started, but still can't figure it out.
@qtowngirl - Thanks! Yea, I didn't think the RLS made sense because it is literally twitching/spasms. I've had 4 people witness them and would say it's seizures too. I'm going to try to get my medical records/results if I'm not satisfied with results after EEG and figure out where to go for a 2nd opinion, but needs to be in my health care network :/ I'll look into the nocturnal Epilepsy though, thanks!

 

[LisaBee]

My daughter has Nocturnal Frontal Lobe Epilepsy. She began having episodes in April, after 2 neurologists and 2 sleep studies said she was just having nightmares. Apparantly these type of seizures are hard to identify and are often misdiagnosed. I found a pediatric neurologist who finally gave us an answer. She only has them after falling asleep, before waking up and if she falls asleep during the day.

 

[LJ-Bain]

lizzyb831
Hi there!
I wanted to let you know that this is sooo similar to what happens to me except mine also involves the right side of my face in a spasm and my right eye closes.
I get really weak, my head nods off then my face turns to the left, the left side of my body tightens and my left arm bends up at the elbow. My jaw does clench too. Sometimes it amps up a bit and my left arm twitches and I'm blowing out lovely spit bubbles but most of the time it doesn't.
My eegs and mris have all been normal too.
I'm glad the clonazepam has been helping you! I find that it's pretty strong stuff to handle during the day and when I took it I was walking around spaced out so during the night sounds like it would be easier to handle. Having the strength of them being reduced is a good thing.
I hope that they are able to diagnose you quickly and that they are able to get things under control.