Complex Partial/Temporal Lobe Seizures - Epilepsy Message Board

amydianne1 · 07-02-2003, 02:24 PM

I have recently been diagnosed with complex partial seizures, and am taking Dilantin for the time being. The doctor thinks that it started after a bad concussion that I had (I had one gran mal, then these started quite some time later). I had no idea what was going on with me, and had no idea this type of seizure even existed. I thought I was going crazy! I have tried explaining to my boyfriend and family exactly what they feel like, but it's hard for someone that doesn't have them to understand. Even though I do not like the thought of taking seizure medication, I am just glad they have been diagnosed and can be controlled. They usually come every 3-4 weeks, and I have about 7-10 a day, and they last about three days. I would love to hear from anyone else that has these and what they go through. I would have one out of the blue and it would physically do something to me as well as mentally (hallucinations, vivid dejavu) and then afterwards extreme exhaustion, nausea, etc. Thank you so much!

Rebecca's Mom · 07-02-2003, 05:23 PM

Hi - my 18 year old daughter has complex partials as well as tonic clonic. I can tell you that the complex partials sometime wear her out more than the tonic - clonic. They are an exhausting seizure. After heaving alot of them - she gets migrain headaches as well. She is developmentally delayed so this is just what we have seen........thinking of you........Paula

bruised · 07-02-2003, 05:35 PM

Hi.My brother has all 3 types of seizures.The types he gets are called convulsive or generalized seizures known as gran mal.When he gets this type he usually falls to the ground and moves all over, sometimes up to 7minutes and he moans.

2nd type is absent seizure where he is in la la land.You can talk to him,but is zoned out in another world for about 10seconds and doesn't recall anything you said to him.Kind of like concetrating on something hard and not hearing a word.

3rd type is complex partial.My brother will chew on his lips,or itch his hands and not even realize he's doing it but is seizure activity ready to happen.It starts on one side of his brain and spreads to the other.

So as I've learned from the epilepsy society,my brother has seizures every day of his life and doesn't know it's happening.He may not have the "big"one happen all the time,but has mild ones every day.I've only seen my brother have the "big"one once,and it made me scared and helpless.But I do and have seen him have his "small"ones all the time.I think that people that don't have epilepsy should be aware of what's going on and how to handle it,because for someone that's never seen one,can get quite emotional.

My brother will get seizures if he plays video games because there's too much brain activity going back and forth.
He gets them if he sees flashing lights,whether it be an ambulance,firetruck,police,or strobe lights.
By being on the computer and concentrating very hard.
He doesn't drive anymore because he's totalled 7 cars in 2 yrs. due to his gran mal seizures.Complete loss of driving.
Sun stroke can cause him also to have a seizure.

curse · 07-02-2003, 06:35 PM

How long since you were diagnosed & on dilantin? You say you have frequent seizures. Sounds like if you have been on dilantin for some time & still " flop" often it might be wise to get a better drug. Obviously dilantin is not doing the trick.

amydianne1 · 07-02-2003, 08:36 PM

I literally have been trying for months to get to a neurologist. I made notes of everything that I can remember after they happen and the symptoms afterwards (i.e. memory loss, extreme fatigue, nausea, loss of muscle control, confusion lasts for about 30-45 minutes. During the seizure, I will play with my hands or pull my hair, I don't lose consciousness, but lose all grasp of my surroundings and have no idea where I am and have almost a paranoia feeling (this lasts for about 30 seconds). It's almost like a strange movie in my head going on during the seizure...It's also an intense dejavu feeling, but I can't remember any details really afterwards. My insurance requires a referral from my PCP and it has taken forever. They finally referred me to a neurologist after many phone calls and several visits to my PCP and the neurologist turned out to be someone who only treated headache patients, nothing else. I started having them one day again, and had roughly seven in a 6 hour period and my boyfriend took me to the emergency room this time. I was still in a state of confusion and couldn't remember what day it was (about 15 minutes after my last one). They admitted me in and I was finally able to work with the neurologist on call. They put me on Dilantin immediately that evening and I was on 1500 milligrams in a twelve hour period. I still had some the next day (about 7 and then roughly 25-30 "small ones" where I would just feel the sinking feeling and kind of zone out to my surroundings, not as intense as they can be). They did a tremendous amount of blood work and said my white blood cell count was extremely high which was normal after having seizures. The neurologist calls it complex partial and temporal lobe seizures. I am hoping that the Dilantin will wipe them out, although I am not enjoying the Dilantin! (I have been on it for two weeks, 300 mg a day, for two weeks, and am still having trouble adjusting to the exhaustion and dizziness. I go back to the neurologist next week (FINALLY able to get a referral by changing my PCP!) and am hoping to see the different seizure medications available. I truly appreciate everyone's imput, this is all pretty new to me!