...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

Thanks again for all the replies. Im just curious about courses of action here. Ive been told now for over 6 months they sure sound like seizures but the other neuro negated them based on the fact that the eeg was fine. I only had some type of "driving" motion shown with the flashing lights.

I know the general dr witnessed them and immediately put me on seizure meds, but he says they are probably seizures. That the new neuro will have to confirm. Just curious how they can do that if another eeg is correct? The dilantin is helping for the most part, only have had a few zone outs where I usually have much more by now.

Its starting to take a toll on me and my already messed up life after the tbi. I honestly think all the migraines and the fatigue from my brain are helping to cause them. Im just hoping someone actually takes it seriously, because hopefully I can go back to work soon and a lot of my job is driving. As of right now I dont drive because im afraid of what could happen as I have zoned out already and hit a bunch of mailboxes.

I dont know, I know nothing about seizures or how they are diagnosed but I can only assume since my mri and eeg were normal in the summer they will be dismissed again and ill continue to have this. Just kind of nerve wracking to say the least. Luckily I do not let it control me, and its just a small hindrance so to speak right now.

Thanks.

HI Bruin,
As I mentioned to you before often damage to the brain will not show up with an e.e.g. and that's because the damage is to deep in a persons brain to show anything.
I'm no Dr. but I have a feeling the TBI has a lot to do with it and that is what could be causing your migraines also. You should go to the VA hospital and have them check you out really good to play it safe.
If the flashing lights bothered you and it triggered sz. for you that tells me you may be photosensitive meaning certain colors may trigger sz. for you or strobe lights will trigger sz. for you. I had a special e.e.g. done where they flashed different color lights one at a time and they found out that 3 different colors would trigger sz. for me. All of this activity takes place in the back of your head called the optical lobe and that's where your eye sight is.
I agree with you all the way the fatique and migraines will trigger sz. for some people just like stress and sometimes when a person is showering the hot water will trigger sz. for the person.
I want you to give this a try it's called "cold water therapy" I had to do it for awhile and it worked well for me. What you need to do is take your temperature 3 times a day at the same time and anytime you have a sz. and write all this down. The date, time of day/night and your temp. Do this for about 1 month and then after that 3 times a day at the same time or any time you start to feel a sz. start up put a cold washcloth on your face and on the back of your neck. The cold water helps calm the neurons down in the brain and it reduces and sometimes stops a persons sz. I had to do this in a medical study and what was interesting is each day that I had any sz. my body temperature was a little warmer than usual and that in turn triggered the sz. You may want to give it a try if you are interested.
In regards to driving each state is different I live in NY and you have to go 1 yr. without a sz. and have a Drs. written statement stating it's safe to drive before you can even try to get your license but I've never been that lucky. I wish you only the best of luck and May God Bless You!
Sue

Thanks for the responses. I actually looked at my eeg from the summer. Evidently I was supposed to go in sleep deprived. I did not know that and actually had a full nights sleep before the test. Wondering if that had anything to do with the results. Theres a few things in the report I dont understand, and never got clarification from the old neurologist because I dont think he could even spell or remember his own name correctly (every appt with him was like my first appt, no clue who I was or why I was there. Heres a vibrating tong, wave it around your head and knees, ask why you are still out of work and then tells you ok bye)

Lower voltage frontally maximum beta activity was seen.

Photic stimulation was performed at multiple frequencies eliciting driving at some but no abnormal responses clinically or electrographically. (i remember trembling a lot with the flashing lights, like I was freezing cold, teeth were chattering and body was shaking like I was shivering)

Hyperventilation was performed with good effort in excess of three minutes eliciting a modest symmetric buildup of slow activity but no abnormal responses clinically or electrographically.


They keep saying in the report that I was sleep deprived as instructed. But I know for a fact I was not, was never told nor was it mentioned before doing it. Curious if that played a role at all.

Ask for an actual sleep deprived EEG! Many people with epilepsy can have a clear eeg, more chance of something showing up with more/longer EEGs. But if the focus is too deep, it just won't be able to catch it. Sleep during an EEG helped show seizure related discharges for our child (location agreed with some descriptions of seizures).