...but the one eeg I had (20 minutes) in july or june says no abnormal activity.

Im on dilantin right now and was on klonopin I think it was a few weeks ago. I have a few things that happen.

For example at the doctors last week I was mid sentence he said and I just stopped and stared and my face kind of drooped with my mouth wide open for about 15-20 seconds. I recovered and was a bit confused, even though im usually semi aware of whats going on. We continued to talk and he said same thing happened incept for this time I was repeating the word WAS over and over again with my arm in the air rubbing my index and thumb together.

I always have these "staring" spells since my head injury in january 2014. I usually just stare off into place or stop what im doing and stare, sometimes mid stride. Usually im self aware of my surroundings and whats going on, but not always. If my wife is around she can usually get me out of it by squeezing me or moving a limb around. She says most last like 30 seconds or so.

Ive had 3 where I flop around like a fish and bite my cheek or tongue. Very rare.

I also usually get flashing lights, smell like blood, or see shadows. But they also coincide with the migraines I get, so im not sure if its a seizure warning or a migraine warning.

Ive been told I also will pick at my cheek and then abruptly get really angry for a few seconds, I totally black out with these and have no clue they happen.

I also will get those electric shock jerks throughout the day and my whole body jolts and then im fine.

These dont happen every day thank goodness. The zone outs seem to happen a few times a week and the electric jolt ones every few days. The pick at cheek and anger ones happen around the same but usually need to be told of them.

Confused and trying to piece stuff together. Not even sure what type of seizures im experiencing, just that the dr now definitely thinks I am after witnessing that. I go to new neuro next week.

Sorry should also not my tongue and roof of mouth will go numb as well, it's actually doing it right now. Occasionally my cheeks will go numb too on one side. Not sure if its the dilantin

Hi Bruin,
Welcome to the forum! I'm so sorry to hear that you are having seizures. I've had epilepsy for 43 yrs. and had 2 brain surgeries to help reduce my sz. (seizures).
What you are describing sounds like you are having a simple partial (aura) sz. that is leading into a complex partial or absence sz. I have all of these sz. and just like you before my sz. started I got wicked migraines and that is what led to my sz.
A simple partial sz. is when a person sees colors in their eyes and smell odd odors sometime the person will also get a nervous feeling in their stomach.
A complex partial sz. is when more than one area of the brains neurons a firing up causing the sz. and the person will start out with a daydream look and then sometimes jerk around and often wander around along with smacking their lips or pulling at their clothing.
A absence sz. is one that last only a few seconds and the person just has a daydream look on their face and they don't remember anything that happened after the sz. they will be confused and tired along with having a headache at times.
Often I have simple partial sz. that lead into both the complex partial or absence sz. I have found that the moment I start to see the colors in my eyes to tighten up all the muscles in my body and make my hands into tight fists for a few seconds and it will stop the sz.
Keep track of all your sz. by writing down what time they happened on a calendar with the type of sz. you had by doing this your neuro may see a pattern as to what time of day or night you have any sz. or what days of the month.
Also I would start seeing an Epileptologist at an Epilepsy Center I have seen many neuro. over the yrs. but I have found an Epileptologist is far ahead in better treatment of epilepsy and I take fewer meds.
Try taking vitamin B12 1000 mcg. once a day and cut back on the starch and carb foods and stay away from anything with nutra sweet all of these can trigger more sz. for many people.
I wish you the best of luck and May God Bless You,
Sue

Bruins,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Our shoulders are here for support in many ways.

I agree with Sue on everything she has told you. One other thing is advoid bright flashing lights. If you are in a theater, just shut your eyes and turn your eyes.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you for the responses.

The first neuro I saw said yah they sound like seizures and once we got the normal eeg back, he dismissed it. Still kept happening for months but he never addressed it again, just said yah they sound like them.

The doctor that witnessed them was a general doctor. He was quite shocked and saddened that noone has treated them just because an eeg was normal. He said that a lot of times they dont show up on an eeg because they are occuring deeper in the brain.

Im not sure what the deal is but hopefully the new neuro will help. Im sure though they wont diagnose anything without some sort of eeg confirmation. Not really sure how that all works.

Thanks.

Hi Bruins,
When I had my e.e.g. my neuro only saw scar tissue on the right temporal lobe but when I had brain surgery done they found damage on the left and right temporal lobe that the e.e.g. and no other tests showed. This is nothing new. I found that the Spect and Pet scans showed a lot of detail along with the wada test if you want to know what's really going on with the brain and what area(s) are triggering your seizures. I wish you the best of luck and May God Bless You!

Sue

Hi Bruins -

I perform and review EEG's for Epileptologists. One thing I know for sure is that a normal EEG does not rule out seizures or epilepsy. Some seizures come from very deep in the brain and do not show up on scalp electrodes. The seizure semiologies you describe sound like more than one type, including possible migraines with aura. Staring spells frequently turn out to be absence seizures, which are generalized, but can also be included in more focal seizures that often have auras, hand and mouth automatisms like you described.

Anyway, a 20 min. EEG is not enough. Where I am we do at least 45 min, and the goal is always for the patient to fall asleep while the EEG is running. Frequently, an EEG in someone with epilepsy can be completely normal when they are awake, but when they get drowsy and start falling asleep, that's when the abnormalities come alive. If a patient has the kind of history you describe with such different types of symptoms, we often have them stay in the Epilepsy Monitoring Unit where they would be hooked up and monitored for at least 24 hours - up to several days in order to catch their symptoms.