I had surgery to treat intractable complex partial seizures 3/06. One of the side effects of this surgery was a change in personality, due to the amygdala able to become more normal. My emotions were completely overwhelming to me for a good year. This resulted in marital and family problems.

In 3/07, I slipped on the ice and fell upon my head. A minor traumatic brain injury which increased the negative symptoms of my surgery. One positive aspect is that I didn't require a stint in my brain to relieve pressure, as I had extra space from my partial temporal lobectomy. I began having frequent auras after the TBI, and underwent lots more tests, to be sure my brain was okay. Another year or so later, I finally got off the phenobarbital (while in the epilepsy monitoring unit at Mayo Clinic for a week).

I've since continued to have regular auras, which doesn't concern my epileptologist too much. I really don't want to be taking medication for the E anymore anyway ~ I take lots of other meds to control my (borderline personality) mood disorder, sleep, etc. I always get worried after nights like last night though. I remember going to bed, and that's about it. It reminds me of when I had complex partial seizures right before falling asleep. I had no memory in the morning. I just recall waking feeling kind of strange for no apparent reason ~ which is where I am right now.

I don't know what to do. I've got enough problems. I've had absolutely countless EEG's, MRI's, and several intelligence tests. I've also been on lots of anti-epileptic meds, but these de ja vu's scare the heck out of me. After so many years of uncontrollable sz's, these dippy scary de ja vu's really shouldn't bother me. But they do. And waking feeling funny, without memory of saying "goodnight" makes me suspicious.


I'm just depressed ~ tired of it, and I feel alone. Thanks for listening..

Shez

Hi Shez,
It sounds like you and I have a lot in common. I had surgery on the right temporal lobe back in 1994 to help reduce my absence and complex partial sz. I was doing really good until I got into a car accident and ended up with a bad concussion. My family Dr. put me on neurontin to help with the headaches but it messed me up terribly the neurontin was causing absence status sz. where I would be out of it from 40 min. to 3 hrs. and now I have more brain damage. All of this because the drug co. making the drug was doing off market labeling.
Now I have clonic sz. along with the absence and complex partial and aura (simple partial) sz. and my mood has gotten a lot worse but I think that's because my family wants nothing to do with me anymore do to my sz.
If I may ask do you have problems sleeping at all like sleep apnea? This could be what's causing the aura and deja vu sz. The next time you start to have either of these sz. tighten up the muscles in your body and make your hands into tight fists by doing this you can stop the sz. I've been doing this since the 1970' s and it works great. Another thing you can do is start taking your temperature 4 times a day when you first wake up, around 12 pm, 3 or 4 pm and before you go to bed also take your temp each time after a sz. be sure to write down what time you took your temp. and what your reading was. Then write down what time it is when you yawn it has been proven that yawning helps cool the brain. this past weekend I had 4 sz. and my temp was a little higher than normal and I didn't yawn once. This is all part of a medical trial I'm in and we hope to get it passed by the FDA to approve a microchip to help cool the brain down and stop sz. Here's wishing you well and May God Bless You!

Sue

Thank you for your information Sue, very interesting!

My surgery was on the left temporal lobe, which is the dominant side for me. As doctors warned, I have a hard time coming up with the word/s I search for (nouns and pronouns) often. As far as I know, no trouble with sleep apnea. I'll have to write down your tips in areas that "jump out" at me ~ so I remember.

I hope that everything continues to go well with that microchip trial. Best wishes to you as well, thank you!!
Shez

Hi Shez,
One thing I forgot to mention is to take note of what the weather is like when you have any type of sz. They are finding a connection with many people who have epilepsy that when I low pressure in the weather is coming in people sometimes will have more sz.
I'm sorry that you sometimes have a hard time finding the correct words to say but as I'm sure you know the left side of the brain is where your speech and memory is at least in most cases. I had a wada test before I had surgery done and they found that my speech was split on both sides of the brain. I know it sounds wierd but in the long run it will be helpful especially if I ever have a stroke and it affects the one side of my brain with speech I will have the other side to take care of things. I know I'm a wierd one. Here's wishing you well and May God Bless You!

Sue

Hi Shez,

Sounds like you need a it of support. I have terrrible trouble finding words, and the same loss of memory at night (and at other times because I disassociate), the auras etc. I think the worst part of it is the absolute depression that comes with it all.

I haven't had brain surgery. I refused it because I just don't trust it. I've seen people change so radically that it damages everything, relationships, friendships, work the whole thing. So I put up with the sz's.

You're not alone Shez, theres a few million of us out here, we just don't get to come together as a group other than in communities like this one (which is a godsend...the community that is, not us not getting together).

I heat up rapidly anywhere from 8 or 9 times a day to over 60 odd times a day. I hate it, it is the worst feeling. I had to keep a journal at one stage and carried the digital thermometer in my pocket permanently.

I have been very lucky with the Neurontin though. It has helped me. I guess some people will be allergic and react to things, others won't. That is one of the problems with us all being different.

Stick with it, ad I hope things improve for you soon,

((((hugs))))
Rhiannon