Hello, I have been told that what I experience is partial complex seizures. I have an odd sensation in my head, kind of like a "shock" or "wave". Sometimes that is all and sometimes I will lose my balance, have been told I walk with a limp when this is happening. I will forget what I was saying mid sentence. Have problems finding a word, can usually think of what the word starts with, just not the word itself, and I don't mean hard words either just everyday ones. I have had these everyday for 41 days straight, several times throughout the day, sometimes seeming like 100 and sometimes only a few. I never go more than 5 or 6 days without having at least one. I started having some strange ones at night when I am sleeping or about to sleep, they are very hard to decribe as it is like a metal band being bent the wrong way kind of sensation only without the noise. Similar to the ones I feel in the day but different. Also I have bitten my tongue in my sleep and once wet the bed never waking. Anyway that is sort of the background in a nut shell, now on to my question:
Does anyone who has PCE experience vision problems such as blurry, seeing "smoke" that isn't there, or sort of double vision?
Do you experience any of the things that I have described?
Do you take a medicine that controls these? (nothing we have tried yet stops mine completely)
I am scheduled for a VEEG in sept. We have never caught one of these episodes on a EEG. Was just wondering if anyone else feels these things and if so how do they deal with it. I get so tired when these are going on that somedays I could sleep and sleep.
Thanks,
Laura

Some of those symptoms sound a lot like what happens when my dysautonomia acts up....I've been on Neurontin for that, but am tapering down since the assistance program won't help, and am on a beta-blocker, which has actually helped those symptoms more (am on tegretol and klonopin for the CPS). Sometimes, the dysautonomia kicks in just before the CPS, so I'm not always sure what's causing what.... might want to ask your doc. Do you pass out, but not with seizures?

Hello neurowreck and thanks for the reply. No, I don't pass out. The odd feeling in my head is so hard to describe, nothing really seems accurate. It started about 5 years ago and steadly got worse. Sometimes they aren't bad and other times they feel as if it almost knocked my eyeballs out and make me flinch. Sigh I have been to so many neurologists and I just don't think any of them have figured it out yet. I am seeing one now in Chicago (quite a ways to go to try to find out what is going on) and he seems to think it is Partial Complex, which is what 2 other neuros have said.
I have such bad reactions to most meds, neuroton (sp) made me so forgetful that I would forget whole events. Zoloft made every muscle in my body cramp and twist (I never knew face had so many muscles and that they could distort so much) another on made me so dizzy that I couldn't walk, had to crawl around my house till it wore off. I was on trilepital when I first started having trouble with my vison, but I went off it and vision problems have stayed.
But anyway I don't pass out and I don't lose conscience (sp) when I have these. When having only one or two they don't bother me so much, or the mild ones. It is the hard hitting ones and when I have several close together is when they give me problems.

Hmmm....well, there are other meds....curious about the Zoloft- did they think that was going to help CPS? Some of those SSRI class antidepressants make seizures worse. I hope they can come up with something to help- that's a lot of time to be miserable, and be so aware of it-- my auras are the only thing I'm really aware of, and it's a funky chest feeling- not pain, but not pleasant either- just that "uh oh" sort of feeling that tells me to get somewhere safe, and ride it out (usually home in bed, since I'm not able to work).

Does the sensation cause any sort of panicky sort of feeling, or more of the awareness that it's happening again?

No, not a panicky feeling. They happen whenever they want. I can be laughing with family and friends, totally at ease and ZAP one will hit. Stress doesnt seem to be much of a factor either. Mostly if I overdo and do anything that exhaust me or if I don't get enough sleep. I guess I just feel like "wow, what was that". One doctor even said to me that the episodes won't kill me cause they haven't yet (ahhh, thanks doc, I won't be coming back). I have even had doctors suggest that it is due to depression, but I have suffered from depression a lot longer than 5 years. That is where the zoloft came into the picture.
I don't know what it is, all I know for sure is that there is something going on with my brain that shouldn't be. I asked the doctors if the narrowed spinal cannal could be a factor (makes sense to me, spinal fluid not flowing properly making my brain act up) but they all pooh pooh the idea. I just wish I could find a neuro who won't just hand me some anti-seizure pills and do the wait and see thing. I was surprized they hand them out like they do without knowing what is going on for sure. Thanks for your replies, I truly apreciate your input.
Laura

I remember thinking I was just plain nuts when some of the symptoms hit with the dysautonomia, that still seem like partial complex sz w/autonomic symptoms...my tongue, inside of my cheek, and the wet bed happen at night. During the day, I get the weird chest aura thing, and have about 3-10 minutes to get somewhere safe...never know how long, so just try to hurry up and get to bed. I hardly go anywhere anymore because I don't want people to see me with the CPS...speech gets 'blocked', chewing, left arm twitches, but I don't remember anything but the "uh oh, here it comes'" feeling. I've been told about the other stuff (except waking up "chewed" and wet- which is humiliating- I live alone, but it still upsets me a lot). Afterwards I sleep like the dead, turn blue, then pale, and ice cold. One arm can be pale, the other flushed, and with the autonomic stuff, I can get chest blotching, one pupil dilated, and I walk like a drunk when it's first coming on, and when I first wake up...have to pee immediately, then just try to get back on solid ground, and shake it off. I'm going a week without them now, but then the next week, I'll have 2-4...no pattern to mine either, except for infections, and extreme fatigue (my nutrition and hydration could stand to improve as well, but I don't have a hunger or thirst "mechanism", so that's an ongoing problem- sometimes ending up with a nose tube at night to get fluids in).

Seizures are strange things- everybody has different patterns and symptoms. But you're right- you have the right to know what's going on.