MS and Seizures

[jensequitur]

Well, I have an interesting question for the rest of you.

I've had some experiences lately that I have been a little worried about.  They start with an odd sensation, kinda like a tightness in my abdomen area.  I continue to feel weirder and weirder, until my body has a little spasm - my arms curl up, and my back arches.

I've done some research on this, and it sounds like I'm having a simple partial seizure.  The sensations are very similar to what's described as an 'aura.'  I'm aware the whole time of what's going on, and I get really tired after it happens.  They seem to be set off by bright spots of light, or flickering light.  Contrast between the white screen and black type makes me feel funny too.  (Had a little one here at work today.)  I don't have any amnesia of the event.

The good thing is that all the research I've done says that these are temporary, and will go away, just like other MS symptoms.  

I'm just curious to know - am I the only one who's had this happen?

[jensequitur]

Right now, the only drugs I take are Copaxone and birth-control medication!  I made it sound like I was popping a lot of pills, didn't I?  I do have a little pain paresthesia, but not enough to need pain control.

I am concerned about being behind the wheel when this occurs, but so far it's always been triggered by flickering light, or contrasting light and dark.  I don't have those feelings behind the wheel (and I don't drive unless I'm feeling good!) so I think it's okay.  

My main concern is two-fold - that I will have larger seizures, and that the seizure will cause me to injure myself.  So far, it's okay - don't worry, ya'll!  I'll keep an eye on the intensity, and if it looks like they're getting worse, I'll definitely talk to the PCP.  

[Rena705]

I am currently on 300mg Carbemazepine (tegretol) tid for seizure control and pain control.  To be honest, I have been on tegretol with doses anywhere from 1200mg/daily to 400mg/daily for seizure control and pain control.  I am currently on tegretol and Elavil (40mg/night) for pain and I believe that the tegretol is doing very little for pain control, I believe it is the Elavil.  

Jen, if you are already on one of the anti-seizure meds for pain control and you are having these seizures on the side (sounds like a expensive dinner tee hee)  you most definitely need to speak to your pcp about this.  Like wonko, I don't know what meds you are currently on but if you are on an anti-seizure med for pain it should be somewhat controlling the seizure problem and if you were not on it...hmmm...your seizure's could be something very serious that needs to be dealt with a.s.a.p. don't you think?  Just another thought...

Rena

[wonko]

In response to your concern about taking more drugs (granted I don't know what you currently take), just a total out of left field uneducated thought:  I know neurontin and tegretol and probably others are useful for both nerve pain and seizures.  I have no idea how the doses vary for the two purposes.

Maybe this overlap in medication uses could enable control of your seizures through medication that would offer you additional benefits?  

Again, no expert here, but I think it is important to control seizures.  Even if they seem in control now, and you can see them coming, you will want to learn about how to best protect yourself with medication.

Good luck.

[Rena705]

The only thing I would be concerned about it the triggers that you might not know about yet...Perhaps your pcp can get you in to see someone else in the meantime??  I started out with the partial seizure and then graduated into the grand mal seizures and while they were only when I was in bed for me, they still wouldn't allow me to drive because they didn't think it was worth taking a chance....I didn't drive again until I was seizure free for a year or so.  Just something to think about honey...i hope you don't have anymore but you just never know.

Lots of hugs,

Rena

[jensequitur]

Well, I called the neuro office - guess what?  He's out of town!  Won't be back until the 1st of the month.  So they told me to call my PCP.  

I'm not sure what good that would do - the PCP would have to send me to the neurologist for seizure activity, right?  She can't just write me a prescription for carmepezine or whatever it is...

As i see it, there's not much point in me taking more drugs.  I know what sets me off, I know how I feel when it happens.  Carol is right - it's always when I'm fatigued and feeling symptomatic.  I go and lie down when I'm not feeling right, so I'm already doing what I can to prevent it - just gotta keep my eyes away from those venetian blinds and the ceiling fan, and I'll be all right.

[grannyhotwheels]

Finally someone else.  I went through a few months of seizures myself.  Mine seemed to be triggered by fatigue.  My doctor put me in the hospital so they could monitor them and run some tests.  He ended up upping my lyrica by quite a bit and I haven't had one since.  Another thing I do is when I feel like I'm getting too tired, you all know the feeling I'm talking about, is go lay down or sit down.  If I'm doing something with the family and I start feeling tired they know that's it, I find a seat and I'm done for a while.  We don't always like it but we need to know our limits.

I'll be praying,
Carol

[jensequitur]

Thanks for the reassurance.  I am weird, though!  Or so hubby tells me... ;-)  

They seem to last about ten seconds or so, from the onset of the weirdness to the squinchy convulsion.  I thought they were going away, and then yesterday happened, and today...

Yeah, you and Rena are absolutely right.  I need to tell my neuro.  Gargh.  It's always something, isn't it!

[Quixotic1]

You are, indeed, discribing a classic simple, partial seizure.  These arise from a temporal lobe and last seconds (usually 10 to 20) to a max of two minutes (though that long is unusual).  These have been described as a result of MS and should be reported to your neuro.

The data is conflicting whether or not seizures of any kind are more frequent in MS.  The most recent consensus is that they are not, BUT the literature is full of case reports in which MS did present or a relapse presented with a new-onset seizure.  So it is known that MS can occasionally cause them.

I had such seizures growing up, but they have resolved now.  I would suddenly feel weird, detached from my surroundings and would get the taste of yeast bread-dough back on my tongue.  I would perceive that I was moving far, far more slowly than everything around me (They would describe this on Stargate as a "time dilation effect").  And I always had this overwelming sense of smugness that no one around me could tell that I was moving out of sync.  I had no motor effects though.

I just told you though so you wouldn't feel like such a weirdo.  And it should, but may not, be transient like other MS effects.

Tell your neuro.

Quix