Possible Complex Partials?

[kara_leigh]

Hello! about a year ago or so I started getting what I call "spells." They start out by getting this strange "feeling" that is hard to put into words, then I get a VERY strong sense of deja vu...maybe there is another word for it? I see something around me and I suddenly feel like I saw this same thing happen in a dream, but slightly different, like an alternate universe type of thing. I literally "see" this dream happening on top of what is really happening. After the deja vu, I get a hot flash and get really sick to my stomach, and I feel like I'm on a roller coaster. I can talk through them if I really try, but usually the most I can do is just sit there and wait for it to get over. These come on suddenly and last anywhere from a couple seconds to a minute or two. Afterward, sometimes I can pick up and go on like nothing happened. Other times I have severe confusion for up to the rest of the day, but especially the first hour or so after I have a hard time remembering things and my short term memory is shot. I can never remember what exactly the deja vu was, what happened to set it off, or what I was seeing in my head when it happened. Also, on about half of them my eyes shake back and forth, like my head is in a paint mixer. lol

I've been keeping track of these "spells" since early December and I've had about 30 of them between then and now. The only pattern I've seen to them is that they tend to happen at the beginning of each month, though I'm not sure why. My menstrual cycle isn't regular so they don't correlate with that. The last batch of these spells I had was at the beginning of March, and it was the worst set yet. I had one in the afternoon on the 4th, one in the middle of that night that woke me up, two the morning of the 5th, one at 1:30am on the 6th (while I was still awake) and then 10-15 of them while I was asleep that night. I didn't have any more until this evening I had a mild one.

My primary doctor referred me to a Neurologist and I saw him on Monday. He thought I may be having complex partial seizures. I had a sleep deprived EEG and an MRI on Wed, then I saw him again today. Both were normal, but he said that doesn't mean I'm not having seizures. He put me on a low dose of Tegretol, 200mg (I think) twice a day. Is this a commonly prescribed medication? He said he put me on a low dose to start with b/c he didn't "want to get me completely stoned right away". lol I'm not sure how I'm going to like being out of it all the time. Will that eventually go away? Do all AED do that to you? I even refuse to take cold medication b/c I hate the way it makes me feel, so I'm not too happy about this.

Do these sound like CPS to you? about how long should I expect for the meds to help, if they will? Should I ask for any further testing?

Also, I have Addison's Disease and have to take hydrocortisone and fludrocortisone every day, and the pharmacist said that Tegretol can decrease the effectiveness of my current medications. That is NOT good. Should I ask for a different drug? My neurologist was aware of the medications that I take before he prescribed Tegretol. Thanks!! (If I didn't put this in the correct section, feel free to move it. )

 

[epileric]

Welcome to CWE K.L.

I've got to say you described my seizures pretty well when describing your spells. If you're tracking them already you might want to start tracking things like your sleeping patterns, when/what you eat, when you do things that might be stressful (emotionally or to your body). That might help you find what is happening at the beginning of the month to trigger these.

I've been on Tegretol for a very long time. It seems to work the best for me with the least side-effects. Whenever I start a new drug, I do give it some time (usually a couple of weeks) to see if I adapt to the side-effects. Quite often they go away or lessen to a tolerable level, sometimes they don't. I think it's the same with some interactions with other drugs, it depends on the person & dosage as to whether they interact. Watch for it to see if you absorb less of your hydrocortisone or fludrocortisone to prevent trouble, especially every time your Tegretol dosage is upped but they might work well together. It's hard to says since everybody seems to react differently to all the Anti-epileptic drugs out there.

 

[Endless]

Hi, Kara,

Welcome to CWE!

Well, your symptoms sound familiar! I get deja vu, sick to my stomach, roller coaster sometimes, too.

Can you respond during your seizures? If so, they are simple partial seizures. In Complex partials you lose conciousness. That doesn't mean you fall down asleep, you could be walking and talking or doing other things, but your own mind isn't engaged. Sort of the lights are on, but nobody's home.

Lots of people don't show a positive eeg. Some of the reasons are in this string:
http://www.coping-with-epilepsy.com/forums/f23/anyone-diagnosed-neg-eeg-9050/

There is more testing if your doctor thinks it's a good idea. Some people get a week-long video EEG, which is done in-patient at the hospital. Most people also have an MRI and a CAT scan to rule out tumors or stroke.

What you are describing sure sounds like Temporal Lobe Epilepsy. Read through the posts on this forum, and you may recognize yourself in what they are describing.

I'm glad you found us, and I'm hoping the Tegretol will work great for you.

 

[Crystal11]

They do sound like complex partials- I have complex partials and drop attacks. I take Tegretol XR 600mg but reducing it this month and eventually stoping it totally. I still take Keppra XR and Lamictal along with a heart medication and allergy med.
The Tegretol is almost always the first thing they try with people who are suspected to have complex partial seizures. Its supposed to be one of the most effective meds. It is a "first generation" med meaning that its a little older and can have more side-effects possibly than the "second generation" anti-epilepsy medications. Those second generation meds usually have less side-effects and possible work better for some.

Even though your tests are not positive for Epilepsy, it doesn't rule them out totally.
I would not worry about the Tegretol, but since you take more meds for another condition, ask questions and ask the pharmacist and your neuro for the best choice or plan. Your neuro probably know what you're already on and made the choice of med knowing what your on. But ask if you're worried.

Tegretol works through your liver and needs monthly testing to check the levels- then every three month unless specified by neuro.

If you have Nystagmus or uncontrolled shaking in your eyes (which I have since birth) it could mean that the medication could be causing it- which mean posible toxcitiy and meds might need to be changed. It won't be permanent- but if its something that happens during your episodes- then it could be a nuerologic condition- neuro can tell you exactly what it is. It would also be an imbalance of the muscle in the eyes.
For me, I have Nystagmus, Ambliopia and Strabismus and CVI which is causing blindness for me- I have always been low vision from birth and lossing my hearing and now deaf- hard of hearing with hearing aids.. Anyway- some of these conditions are neurological and some are a cause of premature birth and for some reason, none of those help me with my Nystagmus- but I guess it won't.

Make sure you watch out for any change while starting your Tegretol. If you have no change in episodes, then they can either adjust, or add to it or have an easier time telling whats going on.
I really hope you find out what your suffereing with. I hope the medication might help you.
All of us here deal with Epilepsy and sometimes other condition along with it. Or a seizure disorder caused by something else.
Please stay strong and ask ask ask questions you may have. Don't be scared or worried about asking too many questions.


Take care,
Crystal and her guide, Umbro

 

[Nakamova]

Hi kara_leigh --

I think your neurologist is spot on with the diagnosis.

Tegretol is one of many anti-epileptic meds. They all work slightly differently. Some have better track records against certain kinds of seizures. With any of the AED meds it's good to taper up slowly in order to allow your body to adjust, and to get a sense of how the med is working. The goal is finding a med and a dosage that gets you control while minimizing side effects. Because anti-seizure meds have to be powerful enough to cross the blood-brain barrier to help the brain, they tend to have a sedative effect. In some ways, that's their "job" -- to help keep the nerves calm. But you won't necessarily feel doped up. Everyone reacts differently.

It's good that you are keeping track of your seizures. As Eric mentions above, tracking other things that may be playing a role in triggering the seizures can help.

Best,
Nakamova

 

[ktbuttons]

ah! i totally know the feeling of deja-vu you're describing!!!!!
it's so weird & so hard to explain, but i totally know what you're talking about. definitely feels like a dream or a different universe, just a completely different reality, almost.
i have no idea if i have epilepsy, though, so i can't be of much help
i just think it's so cool that someone else is having these weird spells that i've been having. thought i was going crazy! haha.
have you read about "deja senti"?? it's a different form of deja vu that perfectly describes the spells i get, maybe yours too?

-katie

 

[behlen]

I know exactly what you are talking about. I was so confused about what I was feeling, could not explain it. I am still battling these seizures and wonder if it something I will just have to deal with. I still get the feeling of gloom with each one.

 

[Endless]

It's extremely hard to explain what things feel like, because seizures are like nothing else in human experience. Most of the time I settle for, "it's kinda like...." but it never really hits the nail on the head. People that don't have seizures try to understand but they can't. No reference point.

Like the simple partial seizures some of us have - fear seizures. I say it feels like I'm a deer caught in headlights - to terrified to move, think, breathe. All encompassing. Some say it feels like you'd feel when falling off a building. Sheer terror. But we all know those descriptions really don't do it justice. It's worse than that.

 

[Becci90]

Certainly sounds like a partial...Do you get a tingly sensation that's actually quite pleasant just before? I get really paranoid for no reason during a seizure aswell, anyone else get that? onder:
My first EEG came back 'normal' too. They told me at the time that the EEG's often come back negative.
My sleep deprived one came back abnormal but I haven't seen my neuro about it yet.

The deja vu feeling I describe as looking at a projector of past memories, I know if I'm being spoken to but everything other than the memory I'm viewing (I've no idea if it's the same memory everytime or not) just seems to go straight over me. I have tryed to pull myself out of it & concentrate on someone talking but it's impossible!

 

[manda817]

I am getting the same feelings, and feeling like an IDIOT not being able to describe them. And i am SCARED. I had a seizure in my sleep March 09 which woke my husband and I didn't come around until I got to the ER. That was the start, never before had one. I had lost around 70 pounds leading up to that, but can't see how that would have anything to do with the start of seizures. All testing came back normal. Had another one in my sleep a few months ago but didn't call for help because I came out of it quickly. Ever since then I get the deja vu, sick to my stomach, weird smell, starts with tingling in my toes and works its way up. Can't talk for a few seconds, ect. I just ride them out. THEN last week, had an episode, then woke up in the ER. First seizure I have had while awake, i was at work at my desk. I am now terrified. I notice the deja vu feelings only certain times of the month, so i am wondering if it somehow related to my cycle or hormones. IT SUCKS, and I am so sorry you are going through it also!