Have seizures? Can you tell me about them?

[rsb]

I have lupus and possible MS (3 lesions visible on MRI, all in L hemisphere, most of my symptoms are right-sided). In addition to standard-fare lupus symptoms and MS-type symptoms (which may be from CNS lupus instead of MS), I have started having what seem very much like seizures. My son has epilepsy, and I'm a nurse, so I'm fairly sure they're seizures.

I called my neurologist (new one, an MS specialist) today and described a pretty frightening episode I had yesterday (will describe in more detail when I come back, gotta take the kids down the block real quick). The nurse called me back and said the neuro (a) has moved my EEG appointment up (shaved 2 weeks off the wait, it's now Thursday), and (b) wants me to call 911 and/or get driven to the ER the next time it happens.

I'm pretty sure these are simple partial seizures, maybe complex partial. I can talk, but I am VERY altered. Scared the crud out of me- I am home alone with 2 kids under five, and I have limited support (my in-laws live nearby but only my mother-in-law can help me or watch the kids, FIL is an alcoholic and can't really do either).

I guess I'm trying to get a sense of what others experience- I know seizures can vary greatly (like all other MS symptoms), maybe I'm just looking for commiseration and support! I'm so scared.

[mjan]

First of all I am sorry your son has Epilepsy and that you are struggling. With complex partial seizures you can talk but YOU would not remember anything.

They first thought I was having both complex and simple partials. I had signs of both but after a 5 day video EEG in the hospital Epilepsy has been ruled out. Also my temporal lobe lesions do not correlate with TLE. Whew..My hubby had seizures since he was 6yo so I got to deal with them alot.

It seems most if not all my signs of simple partials are gone since my last year exacerbation dissipated. Oddly, I was in the hospital for IV steriods and seem to get worse..always wondered if the steriods affected this notion of signs I had while IN the hospital.

Anyway.. glad you are getting an EEG. Is it with a video camera? Being a mom, that would be difficult. You push a button when you are having an "event" that you are aware of. Again..hope this goes well.

You really do not need any more on your plate.

HUGS and stay in touch. You are welcome to write me; email address in profile.

Warmly, Jan

[kellygrn]

Spent the day with them!

My seizures started during a MS episode. Plaques on the frontal lobe. My face muscles stop working. But I can think & write. My are called Absence seizures. I look straight ahead but have no idea what is happening. People around me never can tell I am having one.

My neuro will not give me any meds for it. So I am scared to go outside alone. Hope you get answers soon.

KK

[bellaboostevens]

I actually just had 3 of them sunday night. My doctor said they are in the temperal lobe. At first I felt really sick to my stomach, like I had to throw up but couldn't, went to lye down and my husband found me shaking on the bed. I could actually hear him, but not speak, move or talk. He said when he opened my eyelids, my eyes were going crazy and rolling up, I could not focus and seeing double.

Finally after they all seemed to be over, was extremely drained for the next day. Went to see neuro today and he said that my flare up is causing them. Even though the flare is causing them, he did up my seizure meds. starting a 3 day iv steroid infusion tomorrow, to slow things down.

It's very scary, but I think I am getting use to them, it helps with the aurora(sp?) that is what the doc calls them. I can leave so my kids don't see me.

[mjan]

I actually just had 3 of them sunday night. My doctor said they are in the temperal lobe. At first I felt really sick to my stomach, like I had to throw up but couldn't, went to lye down and my husband found me shaking on the bed. I could actually hear him, but not speak, move or talk. He said when he opened my eyelids, my eyes were going crazy and rolling up, I could not focus and seeing double.

Finally after they all seemed to be over, was extremely drained for the next day. Went to see neuro today and he said that my flare up is causing them. Even though the flare is causing them, he did up my seizure meds. starting a 3 day iv steroid infusion tomorrow, to slow things down.

It's very scary, but I think I am getting use to them, it helps with the aurora(sp?) that is what the doc calls them. I can leave so my kids don't see me.

I know they are scary, my husband had temporal lobe seizures. But are you on meds for it? And in the future there is the VNS that when you get an aura..you put this magnet (that you can wear on your wrist or pocket) over the VNS pacemaker..and it stops the seizure.. how about that?

Hope you get yours under control. You don't drive with your kids do you?

Best to you~ Jan

[sunshine008]

hi

I have kids, not as young as yours and I have had them also the past mos or so.

I'm just freezing cold before they happen and idk what kind they are yet we aren't medicating me for them right now either.

I think one of the hardest things to do as a parent with MS is begin to trust your body again. It isnt' easy, MS can make you feel so vulnerable to just about anything.

Just try to find your trust again in you. Be mindful of your body and what it's telling you because there are signs of it before hand at least for me.

also i find i've had them when i'm very stressed. just take really good care ofyou, eat well, get your rest and hang in there. it's scary i know but i'm sure your dr will get to the bottom of it.

i drive with my kids, as of late i've had older one driving because of recent odd experience, yet once meds in and i level off i'm driving again.

have a good day and again hang in there........

[bellaboostevens]

I know they are scary, my husband had temporal lobe seizures. But are you on meds for it? And in the future there is the VNS that when you get an aura..you put this magnet (that you can wear on your wrist or pocket) over the VNS pacemaker..and it stops the seizure.. how about that?

Hope you get yours under control. You don't drive with your kids do you?

Best to you~ Jan

He put me on Keppra XR. I don't have them too often, I guess it depends on the flare. this one does not seem to want to go away. That is why he is starting me on steroids today.

I have never heard of the vns. I have to definetly look into that. THANKS!

When I am feeling good I do drive, but when I start flaring I try not to. They always told me that when I have one I'm not suppose to drive for at least 3 months. Can you say stircarzy!!! LOL! But i am greatful that when I know i cannot drive I do have a daughter or father in law that will help.

[hotmom]

I have been writing about my seizures and I know when they are coming on I just had one in July. My kids have seen me having them but I am glad so they what is going on and what to do. I all I can say is keep fighting for we are going to win this battle.