Epilepsy and MS

Just wanted to ask if anyone is on or has taken Trileptal. My neuo office called me at work last week and said the EEG showed I could have a seizure at anytime and needed to start this medication ASAP, it might be temporal lobe epilepsy, not sure what else they will have to do to find out for sure. I started on the medication that day. Spent Friday and Monday working from home because I wasn’t sure how the drug would make me feel. I have been lucky because ‘so far’ I have not had problems with it (side effects include dizziness and trouble walking, and so forth – well duh! I had that already). I see the neurologist on the 13th and hope by then all the other test results have come in and maybe I can get some additional answers concerning the possibility that I may have MS. But, this seizure thing sure has taken be by surprise. I have been reading about this type of epilepsy and I can see that it could explain some strange sensations I have had that didn’t cause me to lose consciousness, but were really weird. Anyone out there been diagnosed with this sort of thing and MS?
Side note: Got my CPAP and doing well with it. Hasn’t made me feel any better.
Thanks all,
Sherry

[Rena705]

Hi Sherry...I don't believe that we have spoken before but I have been diagnosed with MS and I presented with grand mal seizures!  My name is Rena and I have been a member on the Forum since about October of last year.  I was first diagnosed with MS in 1993.  I presented though with grand mal seizures that I had only when I was in bed at night.  I don't know that I would have been aware of them if my hubby hadn't been there.  I would only wake up in the a.m. and have broken blood vessels in my eyes and on my neck and my muscles in my whole body felt as though I had run a marathon.

I was seen by an MS Specialist and my MRI was positive for numerous lesions and I had a spinal tap and it was positive for Oligloconal banding.  I also had a slight case of ON but I was only treated with anti-seizure meds at the time and have continued on them ever since.  I tried Trileptal many years ago but the side effects were disabling and since then I have been on Tegretol (Carbemazepine) and now my dosage has been increase to 300mg tid.  I did have some temporal lobe seizures as well...I started with olfactory auras followed by nausea and then my behaviour would become peculiar and I would become unaware of my environment...these "spells" would last from a few seconds to two to three minutes in duration.  I have been seizure free for about 12 years or so and my MS apparently has been in remission.  I had a relapse in July of 2007 and although my current neuro states that my disease is "in-active" I am still fighting to find out what is causing my other symptoms if indeed my MS is in-active which is apparently highly unlikely.

Seizures and MS apparently are fairly rare and we unfortunately are the lucky ones to be different!  If you have any questions, please feel free to post any on either the forum or you can personal message me.  I hope that the trileptal helps you and you don't suffer any further seizures as I can atest that they are no fun.  I am here generally every day and I am willing to help you through this in anyway that I can ok?

Lots of Hugs,

Rena

[Rena705]

Just one other thing...has your neuro actually diagnosed you with epilepsy or is this just attributed to MS?

My MS Specialist stated that I do not have epilepsy but I am a patient with MS that presented with a convulsion.  

Rena

[Fluffysmom]

I'm looking at the voices of experience, here.  It looks like I might be joining the seizure club.  I'm still in LimboLand.

I'm waiting for the results of an EEG; my PCP thinks I had a seizure and that I don't have MS, though I have lots of lesions in the white matter of my brain.  

My question to you to is; does this sound like a seizure to those of you that have had them?  I was watching a live basketball game when all of a sudden my whole field of vision became jumpy and jittery and I couldn't focus, which lasted what seemed like 5 or 6 minutes.  Then I became so fatigued that I could hardly sit up.  

Sorry to ask questions on your post, but I'm very curious.  I'm waiting to be scheduled with a new neurologist, waiting waiting waiting.  I would appreciate your input.

Sherry, hope you get clear answers on the 13th.  Maybe it takes a while for the CPAP to make you feel better.  I know, I've heard people say that they helped amazingly right away.  But hey, none of us are typical here.  :o)

I'll look up temporal lob epilepsy when my eyes are a little less blurry; thanks for the lead.

Kathy

[LATW]

I am taking Trileptal for Trigeminal nerve pain.  It has worked well for me.  I do think it makes me a bit sleepy though.  But the relief I am getting from pain makes it worth it.

LA

[Satori1952]

Thanks again to everyone.
The neuo office, when they called, only said they think it may be temporal lobe epilepsy, so I have a boat load of questions on the 13th. I had no idea that this was happening to me. But I think after reading up on it that I may be having simple partial seizures (will be one of my many questions), for the last 8 months or so occasionally I have had this funny waviness go through my head for a few seconds, sometimes I will smell a nasty odor that no one else will smell, after that I have what is both a wonderful and sad feeling of nostalgia or some long lost memory that is hard to explain, just can’t find the right words; it lasts for a minute or two and it just comes at me from out of the blue, because I won’t be consciously thinking of anything ‘nostalgic,’ it is weird. I thought it was just me getting really sappy in my old age. But I can’t make myself have that feeling on purpose.  I will let you know what happens on the 13th.  I know I will be bringing back more questions to ask everyone too.
Thanks again,
Sherry

[Quixotic1]

In your last post you do seem to be describing simple partial seizures.  The odd smell along with odd feelings is classic.  I think I had those many, many times during my adolescence and earlier adulthood.  I would suddenly feel "distant or separated" from those around me, get a taste of yeast bread dough back on my tongue.  Then I would feel like I was moving faster than everybody else and get this odd smug feeling that they didn't notice. Every episode was exactly the same.  I never told anyone about it, but in medical school decided that they were simple partial seizures.

All- Seizures aren't rare in MS.  They occur at the same rate in MS as they do with the rest of the population.  And, it has been recorded that very rarely people present with MS with their first seizure, indicating that something about the MS triggered a seizure.  I have not read anything discussing whether, in these patients, they think the MS caused a "seizure disorder" or whether they believe it is a passing reaction to a particular lesion (and might clear up later).

Kathy - that "eye jitters" episode you had might have been a seizure.  It is good they did an EEG.  

Quix