Temporal lope seizures, does anyone else experience this?

[ferne]

A little history...
I recently found out I have temporal lobe epilepsy. Because my EEG activity was so concentrated in one area, I had an MRI to rule out a tumor, and none was found. I was pregnant at the time and hey could not do the MRI with dye, so I'm told there is still a slim possibility of a small tumor (the doctor just wants to completely rule it out). I'm not planning on getting the MRI until I quit nursing in about 6 months.
Anyway...
I have twinges of sharp pain in my temporal lobe area several times a day. Not constant like a headache and not enough to even take an aspirin. It is almost like being flicked in the head from inside my scull. Part of me even thinks I'm being psychosomatic.
Has anyone else experienced this? Could this just be another effect of epilepsy? Or could it be a growing tumor that I should check out sooner rather than later.
I will be seeing my doctor again fairly soon, but I was looking for some peace of mind before then

[momof3boys]

Are you on any seizure medications?

I have left temporal lobe epilepsy. Ive had several EEG's and MRI's done. My MRI's always come back normal, but my EEG's indicate seizure activity in my left temporal lobe area. Ive been on alot of seizure medications over the 30 years of my life, but the longest Ive been on any medications has been for over 12 years, and I was on Carbatrol ER and Keppra. Since the age of 18, I was put on those two. During that time period, I would have alot of headaches, but I also had a sharp pain that could come and go during times. It almost felt like a sharp shooting pain in my left temporal lobe area. Now I went to see my dr, and they said it was possible I was having small "on-coming" seizure activity. They tried increasing my Keppra dose to 4000mgs a day from 3000mgs. but I had the worst head pain ever, and also had break through seizures. I was like a zombie then too. No energy at all, just felt dead. I went back to 3000mgs, but they they switched me over to the Keppra XR, in November 2010. Since then, the headaches, and pain I was experiencing, has gone away. But I do recall getting the sharp shooting pains for years prior to being switched over to the Keppra XR.

[Nakamova]

Hi ferne, welcome!

The sharp pulsating headaches can be temporal lobe epilepsy symptoms, so I doubt you're being psychosomatic. Are you on anti-seizure meds? If so, do they help with the headaches at all?

[ferne]

Thanks for the response!! I'm not on any meds right now. The doctor wanted me on seizure medication right away, but being pregnant - I didn't feel comfortable with it. I was on the ketosis diet for 3 months and was MUCH better!! After the baby was born, I've been pretty lax on the diet and I've gotten worse again. Of course I'm totally knee deep in triggers (lack of sleep with a 3 mo old, stress of my 4 other kids ages 10 and under).
I'm really glad to hear that you also had the sharp head twinges and didn't have a tumor
I'm really nervous to start meds and deal with the side effects, I hear that it's hard to find the right meds and dosage...

[Chrissy]

Hi

I to have this type of epilepsy. Have had for 30 odd years. I still get the headaches now and then. But on 1000mg epilim morning and night and have been for years.

[momof3boys]

Yeah, we have three little boys, ages 7, 6 and almost 5 years old. With all my pregnancies, I was on Carbatrol and Keppra. My dr wasnt comfortable with me being off the medications during my pregnancies. All my little boys came out healthy and happy. No birth defects from the medications. When I was a teen, and just starting to get my period, I had a bad time having regular periods. I would go for up to 18 months with no periods. I finally moved out of town, and found a specialist, who said I had PCOS (polycystic Ovarian Syndrom) She put me on Glucophage XR to help regulate my periods, and I was also on Birth Control pills too. Drs have always told me I would never be able to have kids. But little did I know, I found out when I was almost 3 months along, that I was pregnant with our first in December 2003. He was born in June 2004, and I again found out I was pregnant in September 2004. So our first two sons are 10 1/2 months apart in age. Our second son was born in May 2005. We had our third son in November 2006. They keep my busy and on my toes!

[Chrissy]

You are blessed with your three boys. What a great feeling after being told you wouldn't have kids. I have three girls but unfortunately they all have e as well as fetal valproate syndrom and the youngest also has complex partial. But love the lot so much wouldn't know what to do without them.

[momof3boys]

Yes I was very blessed to have three little boys in my life. The drs always told me that if I wanted kids, I would have to adopt. I never thought I would get pregnant, til one morning I woke up feeling different. We were engaged at the time, and something inside me said to just take a test to reassure my mind everything was ok. When I saw that test turn positive, I was in total shock! My first worry was if they baby was going to be ok, and when I got pregnant? I had no clue how far along I was. Luckly after an ultrasound and some tests, all came back normal, and he was born on his due date. Now drs have always told me it takes months to get a woman's body back to being regular with periods after giving birth. Well, i proved the dr wrong when she told me at my 6 week check up (it was really closer to 8 weeks for me though when I had that done) that I was pregnant again! Being pregnant for three years, back to back from each other was a challenge for me.

I have two little nieces and let me say, girls are so much fun! A total change from boys! Im sure they keep you busy!

[Chrissy]

They keep me young. They are so easy to entertain. Given that they have learning difficulties as well as the medical ones they are really loving and I really live for that. They are very thoughtful and loving. I dread the day they will want to move out. Though the 17 year old tells me that she will be looking after me in my old age, I am only 45.

[momof3boys]

My mom keeps telling me, "Wait til they become teenagers!.... then you will have your hands full"! Im the oldest of three girls in my family, so having boys was def new to me. My mom has always told me stories of us being easy to handle as a child, but once we grew up, the worries came into place. She said its going to be worse with boys. So Im sure my days will be numbered in the upcoming years with tons of worries! But with two being in school, the youngest will be going to kindergarten next year, Im looking foward to what life brings with them. They may drive me crazy at times, but I love them so much!

[ferne]

I can soooo relate My oldest was born 9 months after we got married and I have been either pregnant or nursing ever since lol My oldest is a boy, 3 girls, and then I just had another boy. I have to say that my boys are much more difficult than my girls! Maybe it's just MY boys, but they both were/are colicky as infants, and my oldest boy is very strong-willed! The girls are so laid back and just play so nice. I was an only child, so 5 kids is totally above anything I've ever experienced!
Kids are wonderful, even through the chaos, and I wouldn't change any of it...

[momof3boys]

I can soooo relate My oldest was born 9 months after we got married and I have been either pregnant or nursing ever since lol My oldest is a boy, 3 girls, and then I just had another boy. I have to say that my boys are much more difficult than my girls! Maybe it's just MY boys, but they both were/are colicky as infants, and my oldest boy is very strong-willed! The girls are so laid back and just play so nice. I was an only child, so 5 kids is totally above anything I've ever experienced!
Kids are wonderful, even through the chaos, and I wouldn't change any of it...

Yes, I agree, boys are so much a handful compared to girls. I have two neices, 5 yr old, and the other just turned 1 today! Now the 5 yr old can have her times where she can get alittle drama going! But compared to my boys, it seems they are so much different to handle. My boys are always on the go, wanting to go outside, play, etc. Seems like with the girls, they are more "relaxed" and just like to have fun playing indoors. My boys def keep me on the go!

[jyearta]

I can't seem to get this straight..

I was told I have Temporal lobe epilepsy on the right side. Is that just the name of the epilepsy from where it originated.

My seizures are the deja vu, fixed staring, smacking ligs, jerking of arms. Is this called a complex partial serizure or temporal lobe seizure.??

I have always just thought I had temporal lobe epilepsy.

As much as I've read, I should be able to figure this out. But I haven't. On my medic. inform. page I put on thing, then I go changing it. I just want my inform. right.

[Nakamova]

It can be confusing can't it? Seizures disorders are classified in one or more overlapping ways -- not only by where they originate, but where they go, and what symptoms occur during them. So you have temporal lobe epilepsy (i.e. originating in the temporal lobe) that manifests as simple and/or complex partial seizures. (It's "simple" if you are fully conscious throughout, and "complex" if there's partial consciousness.)

In my case, I have "generalized tonic-clonics" -- which means the seizures spread quickly to the whole brain (i.e., they "generalize"), with resulting immediate full loss of consciousness and convulsive phase (tonic-clonic).

Probably it's simplest to write down temporal lobe epilepsy on any forms.

[momof3boys]

I can't seem to get this straight..

I was told I have Temporal lobe epilepsy on the right side. Is that just the name of the epilepsy from where it originated.

My seizures are the deja vu, fixed staring, smacking ligs, jerking of arms. Is this called a complex partial serizure or temporal lobe seizure.??

I have always just thought I had temporal lobe epilepsy.

As much as I've read, I should be able to figure this out. But I haven't. On my medic. inform. page I put on thing, then I go changing it. I just want my inform. right.

Youre having complex partial seizures, by what you explain, such as the jerking of the arms, smacking lips, staring, deja vu, etc. Thats what I had when I had the complex partial seizures too. The kind of Epilepsy you have is Temporal Lobe Epilepsy. Meaning the area in the brain where the epilepsy is located. Like for me, I have Left temporal lobe epilepsy, my epilepsy is on my left side, but affects my right side with jerking of the body, I get the tingling and numbness in my left side, and my head turns to my right when the seizure is occuring.

So if anyone asks what kind of Epilepsy you have, just tell them Temporal lobe Epilepsy, and if they ask what kind of seizures you have, you can say complex partial seizures.

I did my fair share of googling all sorts of Epilepsy information over the years!

[kjcolmo]

ferne,

Its sounds like your going through alot right now.
As of the sudden pains your having in/on your head, is it all the time? Is it after an episode? Is it after yout ake your medication?
I ask because I myself have (Simple partial complex siezures) located on my left temporal.
In fact, I occasionally have the pains your explaining.

I hope to hear back,

K