Just wondering

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foreverdark

foreverdark

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I am wondering if anyone here has any or the same things as I do. (just curious :))

I was diagnosed with Complex Partial Epilepsy second generalization in '05. I have "Spells" my neurologist and I have come to call them, and only 3 or 4 known seizures since my initial known first one. and only two of them were large. My last one was just this past Friday morning, 911 was called and the whole bit :(

These spells consist of:

-feeling as if I am flying backwards
-like I am looking at my surroundings from afar
-deja vu type feelings
-like my surroundings are completely foreign
-if i talk or someone else talks they tend to sound slow motion
-sometimes it can almost feel like you would when you get devastating news or something

I used to get those 5, 6 sometimes as much as 10 times a day. now it is once or twice a week. I take Tegeretol and Diazapam (as needed for the "spells") I had the largest "spell" of the year Thursday and then Friday morning the seizure, so I KNOW they are connected, but why i rarely have large seizures after these spells, I don't know :D but I was just kinda wondering if anyone else has these kinds of "spells" or has at least heard of them.
 
Wellll, I

have HEARD of them, but I have not EXPERIENCED any of them myself. There are, however, some members here that have, so be patient. They will eventually show up........
 
Sounds like those "spells" are complex partial seizures, and if you have grand-mal type seizures afterwards, or bigger seizures, then that explains the "complex partial secondarily generalizing". You have complex partial first, then grand-mal second.
I am sorry you are having troubles right now.
I am sort of going through so rough time with my seizures too. I have complex partial seizures and also take Tegretol XR 600mg and Keppra 3000mg everyday.

I hope things get better for you. The things you describe sound exactly like complex partial seizures can be for some people. For me, all sound condenses in the middle of the room, everything is slowed down, I don't speak much, and its like being under anastethia or coming out of it.

Anyways- I would talk to your neurologist about your "spells" being more than just spells but being complex partial seizures that generalize into another type seizure.

Take care,
Crystal
 
Spells

Yes, I actually had those for years before I ever knew what they were since for a long time I didn't have the gran mal to follow. I would get the weird deja vu and feel distant. Sometimes I would describe that as if I were in a complete different state (NY, NJ, PA) meaning that I just felt out of sorts, but yet along with a weird deja vu so surroundings were familiar but I just felt like I was in a different place. I would also tend to get completely drained from these. I remember my boss witnessed one and I excused myself to go sit down and he came over to apologize and when I said, "What for?" he just said he didn't know but thought he upset me because I just looked like I got really distant, sad, and the color just went right out of me. At the time I had no clue what they were until the gran mal followed years later. GOOD LUCK!!!
 
Spells

I get those same feelings as well. It usually happens about 6-8 hours before the grand mal strikes. Also as a part of those feelings i get horrific nightmares(i lay down and wait for it to happen and try to sleep) before and after the seizure. I have images flashing faster and faster in my mind and its very hard to keep focused on a single thought. The weird thing is, is that i have no clue to what or where the images are coming from. There are alot of strange things that happen to me before it happens. Eveyone who sees me before it, has told me that i look like i am in another world and my color has turned to completely white. No explanation and i dont think there ever will be.

I have just joined here as well and have found it very helpful. Good luck and stay strong.

Going Postal
 
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Thank you everyone for the replies, I find it very encouraging that I'm not mental (well, I am, but not because of these :D). For years I just thought I was over-stressed, and stress does seem to be at least one thing that can enhance these "spells".

Now, if I can just figure out why I don't always have grand mals afterward I will be happy. The constant wondering, "Is this the day?", is starting to get to me.

Again, thank you all, and I am sure you will see more of me in the near future!! :)
 
Just a side question here, can CP-SG Epilepsy evolve? Like could someone with CP-SG develop into something more and have more of the grand mal type seizures? Going to my Neurologist in about 2 hours, will ask him to, but I am his "most interesting" case so he may not be able to answer :D :D *L*
 
foreverdark, Unfortunately they can evolve or at least they did for me. I lived with the per se' auras / seizures that you're describing for years before they turned into gran mals. There was a period where I didn't have them for years also. When I first started getting them (17 yrs.) they were in my sleep and I would call them nightmares since I didn't know and this lasted for quite a few years then stopped, then at approx. 26-27 yrs. I started getting them during the day (5-10 seconds of weird deja vus', feeling out of sorts, drained, etc.) and this lasted for a few years and at 30 years I had my 1st gran mal and meds controlled them for a while but then to no avail. At 35 had the right temporal lobe surgery lasted for 4 years and at 39 started having seizures again but only in my sleep and here I am. I'm now experiencing what "Going Postal" is saying about the flashing random pictures which I get prior to sleep, which seems to be a good indicator another seizure is to follow in my sleep. However, they're not gran mals but I will make the noise, restless movement and sometimes bang my left arm. Prior to the flashing random pictures now I use to get the random picture but they weren't necessarily flashing and they were more like thoughts (pictures) deja vus that would drain me. I would suggest definitely talking to your neuro and possibly either going on meds or trying some alternative approaches. GOOD LUCK
 
In answer

to your question about partial seizures (of any kind, really) evolving into bigger, generalized ones.

No, they don't always have to. *sigh* I know that is confusing, but sometimes the brain, being the DIFFICULT TO UNDERSTAND piece of "machinery" that it is, chooses not to complete that process, and just sort of "tortures" us with the partial seizure instead.

Yup, it's ABSOLUTELY ANNOYING, I'm sure. But, it's the truth, too. I've only had this happen once or twice, and had to really puzzle it out before I realized exactly what happened (it was years ago when my seizures were still in the daytime). I had to ask about this, to make sure because of my previous statement....

Meetz
:rock:
 
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Evolving

I hope my response didn't lead you to believe that they can always turn into bigger ones. Like I said I had mine for years and then they even disappeared for years, so NO I agree that they don't always have to get worse or turn into gran mals but unfortunately sometimes they can. HOPEFULLY yours will just go away and that too can happen. I don't really know if anyone can know for sure since the brain has it's own mind and we are all unique, so no telling with that. But, I would absolutely start taking precautions with perhaps some of the natural approaches.
 
Well, friends, that was just what I wanted to hear actually. Which is kind of what I figured. Because my E has really puzzled my doc.

I've had these spells for years, just got used to em, figured they were stress. Then, one month to the day after my shoulder surgery, I had my first (physical?) seizure in our van with our now 4yr old in her infant car seat. It was strong enough I tweaked the seat and everything. And now, last Thursday, I had a very LARGE spell and then 5:30am'ish Friday morning I had another physical seizure. So, even though stress can increase the risk of another seizure, I'm stressing that I'm getting worst. Which is why i asked.

Oh well, can't "fix" it now. What happens will happen right? :D

Be well and safe my new friends!
 
You be

well and safe, too, Forever, but if I were you, I'd also be asking your neuro for another EEG...........and this time, ask for one that is AT LEAST 72 hours long. Preferably an ambulatory one, so that you can be in your own environment, so that your natural triggers can set you off.

The reason I say this is that as you probably know by now, the EEG is literally a "snapshot in time" of what is going on in your head at the time that it is hooked up to your head. If seizures are going on then, then the seizures will be recorded--so the LONGER it is hooked up to your head, the more likely it is that seizures will be recorded. Make sense?

It is possible, too, that you may have to up your meds.........but have you also considered alternative choices to help yourself? There are an abundance of them....

Neurofeedback, diet.....the diets are listed here, but they're really not considered diets to lose weight. They're considered diets to help with seizure control. They are the GARD (Gut Absorption Recovery Diet), Ketogenic, LGIT and MAD (or the Modified Atkins Diet). An E journal would probably also be quite helpful, too, and I have plenty of information on that.

An interesting book to read...by Adrienne Richards and Dr. Reiter. Oh, I just lost the name of it. It's in the CWE Shop........I BELIEVE it's called Epilepsy: A New Approach, Treating It Naturally. (Don't quote me on that. My mind is tad messed up this morning, I had to take all my E meds at once instead of spread out, for a specific test in a bit, so I can't think straight.) It's a great book, plenty of information that you'll find interesting and very helpful.

Take care.

Meetz
:rock:
 
Well, my doc said that there is no doubt now that I am indeed Epileptic, since my Tegeretol levels dropped real low and then I had a big seizure. But still thinks allot of these "Spells" I have are anxiety induced or flat out anxiety, of which I am not sure at all. Oh well, thank you all for answering, nice to know I am not alone in the world :D
 
It's usually a fine line between anxiety and epilepsy. I am thinking that by doing what Meetz suggested, a much longer EEG, your neuro could figure out if it's indeed just anxiety or seizure activity. The symptoms can often mimic each other very closely, so it's important to do everything you can to figure out which is what.

I know it's hard because my wife (she has E), has the same problems. She was having mental health issues before her seizures started and so it was really hard for us to determine if it was a mental health thing, or seizure activity. With the addition of meds, things got even more confusing. Her anti-depressant, Zoloft, I still believe caused her threshold to lower. She had 2 tonic-clonic's a year apart, then upped her Zolfot, and then had another t-c soon after. I feel it's more then coincidence. After getting on Depakote and off of Zoloft, her seizures changed into partials as well. It was weird because her post-ictal went from 10-15 minutes after a t-c, to 2-3 hours after the partial. Very strange indeed.

After the SE's faded from the Depakote, and she got on a different AD (Lexapro), she's doing extremely well. The seizures are now controlled and she's doing much better mentally. I honestly haven't seen her this happy and stable in years. Whether or not it's the seizure control, the Depakote, or her AD, who knows. E is so confusing by itself, by the time you add in the anxiety/depression and the mix of meds things get even more so.

Just hang in there and keep in touch with your neuro. Also, think about doing that longer EEG. I think it could help clear things up for you and your doc.
 
Thanks for all the answers, but now this evening has raised yet another question *L* :D

Why would one have the auras without a seizure? Or am I not understanding the concept of auras? Because I had a pretty good "Spell" about an hour or so ago, maybe two, and it got me to thinking why I can have these "Spells" and very few seizures... hmmmm
 
Aura and Seizure?

My neuro explained it to me that the auras are technically mini seizures. In many cases a larger one follows, but not all the time. I use to like getting the auras because it was like a warning for me that a bigger one would follow, so I had maybe a minute to get situated. Then one day my auras just stopped and I would just go right into a gran mal. But sometimes after the arua I would only lose consciouness for about 15-20 seconds, but still functioning (automatism - like on auto pilot). GOOD LUCK!
 
Auras are an indication that certain neurons are overactive. Depending on the initial trigger and context, plus your seizure threshold, the neuron over-activity might progress to the level of a seizure, or it might not. You can read more about auras at the link below -- it's about migraine auras, but the pathology of the aura is basically the same as with epilepsy.

http://headaches.about.com/od/migrainediseas1/a/aura_ache.htm
 
mine are similar..I feel as though all noise is coming from inside of me and magnified 1000x. I feel like I am everywhere like the ground, the trees, the sky, or I experience being whoosed out of my body..one time like I was falling backwards down a tunnel similar as you described. I get words on a blue flashing screen before my eyes, and I tend to repeat words over and over .. the last one I had i experienced ALOT of fear and ran out on the street screaming "no no no no no" over and over. I did not realize I was screaming at all.

Usually the complex partials I have are just absaloute terror, as though some spiritual force is trying to kill me, though at times I have had a few pleasent feelings and everything looking extremly colourful, detailed and vibrant around me.

I hope you will feel better soon and have less of these.
 
Have you considered going to another doc. It sounds like your current doc is dismissing your concerns and not answering your questions. I am pretty new to the seizures (just over a year of being diagnosed) and I have learned a lot from this forum....but when I asked my neuro questions or talk about my worries and concern, it took each very seriously.
I have both simple and complex partials. Often the simples are my aura and gives me a warning...but a simple is really another kind of smaller partial. And I have had a simple without having a complex follow.
This is the best place to learn, vent and get support. It is my lifeline
 
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