New and confused about complex partials...

[ButtFlakes]

Hey everyone, I'm Sara. I'm a 25-year-old female with no kids.

I'm totally new and this is my first post...

I had been having partial complex seizures for about 5 years that I assumed were maybe some kind of panic attacks or something. I experience random periods of time where I am disconnected from reality, disoriented, and I can't tell the difference between reality and my dreams. I sweat profusely afterward and have instant uncontrollable panic attacks. Stress compounds my problem and causes more seizures.

In Apr. '09 I was the General Manager of an upscale Turkish restaurant that was moving and opening a bigger and better dining facility. I had been having more and more of those panicky episodes, almost every day, actually and had been attributing them to stress. I went to sleep one night toward the end of April and had a complete grand-mal seizure in my sleep. My fiance was sleeping next me, and it woke him up. He took me out of bed and did his best to hold onto me while he debated calling 911. All I know is I "came to" in his arms on the landing of the stairs in the middle of the night, completely nauseated. When I "came to" all I could do was make for the toilet to vomit as fast as I could.

I made an appointment with the most-recommended neurologist in my area and began seeing him for treatment. I have been seeing him for 2 months now, and have learned that the little panic attacks with disorientation are actually partial-complex (petit-mal?) seizures and I have been having them for 5 years. He's unsure what exactly eventually triggered the grand-mal, but he assumes it was stress. I had an EEG and an MRI that showed NOTHING. I now take 450 Mg of Trileptal every 12 hours.

The big problem I am having, and the reason why I am here today, is I just don't feel right. I feel like I am straddling two worlds, one world is the world of my dreams that causes these seizures, and one world is the concrete world I live in now. I know my dreams don't cause seizures, but I have no other way of describing how I feel. I swear I feel like I am literally stuck in my dreams while having the seizure, and NOW I feel like I have two brains, one is in seizure world and one is here with me now. Like in the background of my mind I can feel panic and disorientation. In my two brains, one is panicked and seizing, and one is fine. I can feel the heavy weird feeling you get when you are worried about something big, you know that almost panicky feeling in your chest? I feel that all the time... it's like I am skating the edge of a seizure all the time. I'm also highly disturbed by the fact that nothing at all has presented itself on any of the tests so far. I hate that I can't see my problem.

As a note- I have been having partial-complex seizures a few times a week now that I have started the meds, and I am not even working or anything anymore.

I just wanted to introduce myself and tell my little story. I am still effectively right in the middle of dealing with this, changing meds, having seizures and identifying my exact problem. I would love to offer any insight I might have gained and share my experiences I'm having here while identifying and treating my epilepsy.

Thanks for listening!

-Sara

 

[Nakamova]

Hi Sara, and welcome to the site!

There's a lot of good information and support here, as well as forums for chatting, venting, and asking questions. I hope you find time to explore.

It's not unusual for EEGs and MRIs to show nothing definitive. EEGs can have both false positives and false negatives. There are people on this site who have never had a positive EEG, and they definitely have epilepsy. MRIs look for structural anomalies or scars that might cause seizures, but those are often too small to show up.

Regarding the cause of your partials and grand mals -- there can be several factors involved. Work stress might have precipitated your grand mal seizure, but your brain may have been building up to it over the years and simply reached a tipping point. People on the site have found it helpful to keep a record of things like sleep, diet/metabolism, stress, exercise, activities, overall health to help potentially isolate and eliminate factors that may be seizure triggers. Many have found success through changes in diet/nutrition, and/or through the use of neurofeedback, relaxation techniques, and cognitive behavioral therapy.

It does sounds as if your medication may not be completely successful, since you are still experiencing unusual sensations and anxieties. It can take awhile for your body to adapt to the meds (2 months is still early), or the med may not be the right one for you. Some meds also cause anxiety or volatile moods as a side effect. Make sure you let your neurologist know what you are experiencing, to see if there are adjustments that can be made.

Best,
Nakamova

 

[EVOL]

I've ben there, ask your doctor if you can try getting on depakote, the side effects suck but i think you'll feel better. Also you may have some form of psychosis you may want to look into. My personal opinion is when ur epileptic you brain chemistry is very altered to the point where everything changes, life, the world and how you live and view everything. An altered perception, the whole "in two worlds thing". If you have problems when u slep or or slep deprived, little nervous jerks they're called "myoclonic jerks" get used to em. Basically try to stay calm cause stress and panic can bring on seizures or you can come very close. My seizures ruined my life, hope u fair better than I.

 

[Crystal11]

I think when you have epilepsy or seizures, your perception of the world does change, becuase you cannot predict when a seizure will come. Just like with any other disabilitiy (I am deafblind), you must realize how the world might preceive you with the knowlege they have or don't have.
We must be strong, I say. Educate people about Epilepsy, seizures or any other disability too. I educate about blindness and hearing impairments all of the time and most people are more understanding to those with disabilities or conditions once they are educated.

Psychosis can happen before or after a seizure- usually when your confused or out of it for a while. Right? Not all people have ictal or post-ictal psychosis.
I hope everything turns out for you better EVOL. Welcome to CWE.

 

[foreverdark]

I myself have Complex-Partial Epilepsy with Second Generalization (what my neurologist said (STILL not 100% sure what it means)), and I have had it at least since 2005. As I said in my profile info, I was just taken by ambulance to the ER just this morning for my second, large seizure. I've had several smaller ones but only 2 large.

I have the "Spells" I call them where I feel as if I am flying backwards, de ja vu, as if I am looking in from the outside of things. These can last from 5 seconds to several minutes. In face I had a real good "spell" yesterday with seizure this morning.

I take 2 Tegretol XR 200mg twice a day, and it does a very decent job with the seizures but not the "spells", I take Diazapam for the "spells" 5mg as needed.

I say speak with your Dr. and see what can be done, let him know EXACTLY what/how you feel and discuss openly what you think you should try.

 

[marion]

Hi Sara - I was very interested reading your story as mine is very similar. I've had nocturnal seizures for 4 years and I didn't know it, though I knew something was wrong. I'd wake up in the morning knowing that I bit my tongue in my sleep. And my long-term memory was getting worse and worse. The way my seizures were discovered is that my son and DIL were visiting and heard me in the middle of the night. The first thing I remember is waking up in the ambulance. That was two months ago and since then I've been taking Lamictal and it seems to be controlling the seizures. The side effects are another story! I understand how you feel, this is a whole new world for me too, and it's very strange to think of myself as having epilepsy after 70 years, but I'm getting used to it. And, of course, this forum is very helpful. I live in the country and can't drive for 6 months, so that's also strange and hard to get used to.

 

[Loudmouth]

You may want to keep a track of what you eat, I have found that aspartame (found in many diet foods) and MSG to be triggers of my CP seizures. By cutting them out of my diet it has helped to reduce my seizures. I too often get that feeling of being half in one world, half in another, my current neuro explains it as that your brain is trying to have a seizure, but the meds are preventing it, so you are on the 'edge' of tipping into a seizure. When my meds are fully working, I lose that feeling, but my body adjusts to my E meds very quickly so my dose has to rise/ another med has to be added when I get to that point. It may be that your trileptal is not at a high enough dose for you at the moment or that this is not the right med for you. It would be well worth seeing your Neuro again, the balancing act with meds is a funny one that even after 6 years in my case is still not over with...Good luck with your journey, and I hope you will stick around here. Oh and BTW I LOVE your name!!