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Epilepsy questions
Tue, 12/19/2006 - 20:29Hello all,
This side of the building is sort of all new to me, I have been focused on other stuff as you will read and I am looking for advice, thoughts, guidance.
A few years ago I was diagnosed with a brain tumor on my right temporal lobe. It was discovered because I had a gran mal (aka tonic clonic) seizure while out on a run. The tumor was removed with surgery, then radiation and chemo. Due to the "injury," as the medical world calls it, to my brain from the tumor/surgery, I am left with a scar on my brain, which perhaps is the cause of ongoing seizures. I have not had any gran mals since the first one, but it seems like every month to month and half I go through a strong bout of seizure activity, which I am today and yesterday.
The sensations are scary, as I am sure you all know, like I am being sucked into some other world, or like someone hit play on the DVD player and the memories are being activated uncontrolabley, and it all gets me frightened cause they are the strong "auras" that potential come before a gran mal. I've been told I am lucky I get the auras...
I am on 1000mg tegretol twice a day and 500mg keppra twice a day. Took lamictal which made me so anxious, I so now understand clinical depression!
The real reason I am babbling I guess is do you all get the auras and get scared crapless? What are yours like?
I was just in the supermarket about three hours ago and basically had one come on and had to leave the groceries and get to the car for fear of the whole thing. Also, my neurooncologist is finally sending me to a neuroepilepsy specialist to see if he can help = new meds???
Sorry for rambling just trying to start to become an "expert" in this stuff with people who go through this, my brain tumor buddies don't really have this problem and this journey is now seeming to take the lead; I got the brain tumor world down pretty well...
I thought it was neat to learn that the word epilepsy just means repeated seizures. The world makes you think it is akin to lepresy... Cheers and good vibes to you all...
David
Comments
Re: Re: Epilepsy questions
Submitted by cyndels02 on Thu, 2006-12-28 - 12:05
Hi,
I don't have epilepsy, but I found this site by typing in strange symptoms I've had periodically since I was a child. It happens very rarely, probably two or three times per year. I've never had a seizure or anything, but I've been diagnosed with depression, however, I am over this. Anyway, I have the same sort of symptoms. I feel like I'm remembering something from when I was around 4-6 years old. It's a very, very strange sensation. I also feel like I am moving faster and slower at the same time. It's like I'm looking around at everything and everything seems slower than me. The weirdest part is my thoughts. I have one set of thoughts that seems like they are gibberish and in slow motion and then my regular thoughts seem to be working at lightening speed. It only lasts about five minutes, but it happened to me last night and I just finally decided to see if I could find anything on the Internet that sounded familiar to what I was experiencing. Do you guys think it is caused by the medicine you are taking? I am currently not on anything and it has been a little over a year since I was on anti-depressants. I would just really like to know why I'm experiencing this, but I don't want to talk to anyone because it really sounds crazy. Like David, I also have a fear that is accompanied with the experience. I really hate it and can't figure out why it is happening to me. It isn't a huge deal since it hardly happens, but it is strange and it bothers me. Any thoughts?
Thanks,
Cyndi (22 years old)
Re: Epilepsy questions
Submitted by cannas on Thu, 2006-12-28 - 12:21
a dramatic quick feeling of holy terror (as I describe it)is a part of the beginning of my CPS...accompanied by the epigastic rising then a brief vocalization, automatisms etc...a particular pattern
I HATE it, but my meds seem to help that a great deal. I don't have to worry so much about...worry/total fear anymore. I take 3000mg keppra and (ugh) small dose lyrica, do you tolerate the keppra, maybe you can go up?
My auras are changing recently. I used to have jamais vu "I have never experienced /been here before." Now I have deja vu, really strong, but its scary because I dont remember having it until after the fact. My brain doesn't go on guard like the other. Yes, auras can (or you'll just get an aura) be a warning.
I also smell odors or taste weird tastes and then something happens. Even a migraine.
Maybe the body is like," go away from danger," and perhaps that's why we experience that fear. You can leave a place..although it sucks that nothing more may happen, but you can't really know with this.
Re: Epilepsy questions
Submitted by angel_lts on Thu, 2006-12-21 - 08:06
Hi David, I also have scar tissure form my Left temporal Surgery. No not everyone gets the auras, and not everyone gets the scare tissue either. I Luckly, lol have both. I am glad I do have the auras before a generalized seizure, which I only had because I had low sodium many times from one of the meds. But most of the time I have auras by themselves, no seizures follow. Actually The word "epilepsy" comes from a Greek word meaning, "a condition of being overcome, seized, or attacked." take care Lisa Http://health.groups.yahoo.com/group/epilepsyapproach/