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'Seizure like' activity but normal EEG's and MRI's

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Posted 12/7/2010 7:22 AM (GMT 0)

Does anyone have experience with 'Seizure like' activity but have normal EEG's and MRI's? I've suffered from them for YEARSSSSSSSS. They always vary in frequency and even how they transpire:

*I can stop breathing

*I can slur my speech and/or stutter and/or not be able to speak at all and/or not be able to get certain words out

*Have jerking movements of any extremity

*Have simple tremors

*Loss of strength

*Mild loss of memory of event (only happened a few times)

*Most of the time, I'm completely cognoscente

*Lupus fog happens for days afterwards if it's a 'big one'

*It can get preceded by a burst of anger lashed out...I'm one of the sweetest people you'll ever meet otherwise....I promise.

*I usually have a Mylar rash prior, during and after

*Usually get extremely hot beforehand

*In the past it's set off by a sharp stabbing pain anywhere in my body, or a loud noise or being startled or bright lights

I couldn't work for years because of all of this, plus the other symptoms from the lupus.

One neurologist put me on Depekote ER and said it was seizure like, otherwise known as pseudo seizure...also known to be psychiatric. We (hubby and I and friends) believe it's the lupus. I took the Depekote ER for 6 months or so, I just got worse and gained 80 pounds in the first 3 months. I of course went off of it. That same Dr. put me on valium...hated it. Now I take flexeral (muscle relaxant)...........sooooooooo much better! I still whind up with the Mylar rash which I treat with the cortosteroid cream, but I'm at least able to not fall down or be incapacitated for days on end.

Now, I can't drive more than 5 miles due to the motion problem my brain is having.

Anyone have anything similar?
Posted 12/9/2010 4:12 AM (GMT 0)
Well, it's been days since I posted this...I'm assuming no one else has my kind of problems.
Posted 12/9/2010 5:31 AM (GMT 0)
I haven't experienced this, it must be awful for you. It sounds like it would be scary. I do have moments where I can't think, and all I can say is ya. And when I do try and speak my voice sounds unfamiliar and far away. it will happen suddenly and takes me a minute to snap out of it. In fact it happened today... my sister-in-law drove me to my appointment yesterday (wow I think in my other post I said it was today, felt like today) and then we had to stay overnight for my nephews endoscopy today and I guess the trip and everything was just too much.

I do get the ocular migraines, I think. Is that where you see floaters, and colors, and loose areas of your vision. Like one time at work I lost the center of my vision and when I looked at people it seemed like the middle of their face was missing... really freaky! Might be something different but I remember the eye doctor saying it was a kind of migraine.
Posted 12/9/2010 7:35 AM (GMT 0)
Well sweet Buterfly that isn't good, I just asked my ruemy today in an e mail today about Lupus in the brain, he said comenly it causes head aches,uncomenly convulsions, tremors, strokes,ecs...i hope you are able to see a ruemy.
I asked him this because i have to go see a nuero. in Jan. because I have issues myself and my reg. Dr. said that it can affect the brain, i don't have convulsions but mild tremors, weakness, my memory sucks, dizzy, balence not good at all I have a cane where ever i go now even if i don't have to use it all the time i have it. The Dr. put me threw a buch of tests in the office with baence,reflexes,ecs. I have an issue with there are times that I will go to take a step and my left leg won't move to take that step, strange but i hope that I will be given some insight into what is going on with me.

I know that i won't ever be as good as when this didn't happen but to be able to know what the problem is would be nice.
I hope this helps
waves of hugs sent your way
Posted 12/9/2010 7:42 AM (GMT 0)
wow J.P.that sounds ohso familar, the can't think and yah is the word that comes out, also the vioce thig so weird don't ya think?
I have head aches, just go to bed and take some Tylenol it helps a little. The worste and it happend once I got this real bad head ache and it went down in my spine I was sick to my tummy and it lasted 3 days, thats when my job let me go w/ unemployment and ins. for a while, nice rite....anyway I was so ill I should have been in the ER but stuburn me !!!!
Posted 12/10/2010 6:41 AM (GMT 0)
J.P.~ That does sound like a migraine and an ocular migraine combined. I've been diagnosed with 6 different types of migraines...I'm pretty sure that they can happen in unison with others. The person that diagnosed the ocular migrain was an opthomologist (eye Dr.) and a neuro opthomologist confirmed it....they based it on my symptoms. In fact all the migraines are diagnosed that way come to think of it.

Puggpuppy~I used a cane for a few years after the self diagnosed stroke that I had. I've only needed it for a few days here and there this past year. I feel for ya, it's a challange to be physically limited. When I have a bad flare, I use the walls to get around the house.

I'm going to see if I can get in with a rumey that is closer to my house. I've decided that mine is good, it's just that he's an hour away which is really bad 'cause I haven't been able to drive more than 15 minutes for over a year now. My best friend was just dx with RA by a Dr. in my town and she really liked her. I'm going to see if I can get in with her.


Healing hugs are sent to you both! :~)
Posted 12/10/2010 8:46 PM (GMT 0)
I had the same thing-kinda like stobe lite vision,lites flashing and cant see the faces.Thats what started it all with me,I had bad headaches before where Im sick for a week,and have to go to emerge to get shot with morphine.,but this was different.It all went downhill from there,thought it would pass,Id go back to work and everting would be good.But I got worse.I can certainly relateto the fog-its like youre not there,anyone seen the commercial for sleizures?thats exactly I it is and was.I have to read everything over cause it doesnt want to sink in.No diagnosis of lupus yet,just fibro and cfs and hypothyroid,etc etc.2 docs think it is lupus 2 dont.positive ana,but not that high yet.But the blisters on my head are very sore.
Posted 12/12/2010 6:11 AM (GMT 0)
Shoeless~ My A.N.A. goes up and down with flares and inactivity. I've had some dr's say that I do have Lupus and others that don't. I've had to decide, who am I going to believe in? Who seems to be most concerned about me and have solutions for me? If the solutions are not risky, then why not try them? Doing nothing seemed to not help me.
Posted 12/12/2010 1:10 PM (GMT 0)
Hi butterfly!well,Im in Canada eh....and the docs are referrals eh.ya cant just pick one to see eh.I wanted this one that Ive heard great things about but she said I was already seeing someone-how ya supposed to get a second opinion eh?They really arent offering any solutions,rhumy had gave me methatrexate shots in my hips and shoulders...and I did notice a big difference in the hips eh.But my overall exaustion and messed up head are still there...and messed up hair of course.What have you tried?
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