Hello to all!!

[PackerFan12]

Hi everyone-

My name is Katie and I am a 28 year old with Intractable Partial Epilepsy. I have Grand Mal Seizures approx. once a week (3-4 a month) I was diadnoised at age 13 and had a Right Frontal and Tempral Resection when I was 15. I have been through the list of medications...I don't think there is one I HAVEN'T Tried. I am currently Taking Keppra, Tegretol XR, and the newest is Vimpat (which I just started and am having some not so fun side-effects with)

Two years ago I was ALSO diagnoised with what they called Nonepileptic Behavioral spells. Basically I was having seizures due to stress at work...but they weren't seizures. They told me because my body aready know how to have a seizure, it was my bodys way of dealing with the stress. OK. Weird.
Anyway, these are now under control. But the grand mal seizures continue to alter my life about once a week.

I just found you all while i was playing around on Pintrest--my new favorite website! I am hoping to learn some more about myself and coping with my seizures as well as make some friends along the way.

Katie

***Oh, and my username describes me the best way I know how. I LOVE the Green Bay Packers. I usually get to go to Lambeau once (maybe twice a year) and cheer on my Pack. I love football and watching the Pack on Sunday helps me to forget all the crap I go through dealing with seizures.

 

[Nakamova]

Hi Katie, welcome to CWE!

You didn't want to call yourself Cheesehead, I guess...

Just out of curiosity, how did the docs decide that the "spells" were non-epileptic? From what I understand, this is a grey area where it can be hard to make a definitive diagnosis.

Anyway, I hope you feel free to make yourself at home and explore the different forums.

Best,
Nakamova

 

[PackerFan12]

Well a Cheesehead I certainly am! Thank you much for your welcome! I look forward to getting to know everyone.

You are correct about the difficult diagnoisis. It took two neuros, 8 weeks in the the hospital, and a trip by ambulance from one hospital to another thrown in the mix but they did finally diagnoisis it. And it was so WEIRD...in a matter of days they stopped. I had to talk to a shrink and take some anxiety meds but I was able to work through it.
The two neuros had VERY differing opinions. One was treating it as epilepsy (as they looked identical to my grand mall seizures) and the other knew right away it was nonepileptic.
I can't tell you for sure as I have never asked my current neuro but I am almost positive he knew when he saw me have one that it was nonepileptic. He, of course, ran several test to confirm but I think the deciding factor was a lot of what my body was doing during it. It was two opposite sides of my body--my Right arm would jerk but I would turn to the left. I guess its not possible to have two opposite sides of your body work differently during an epileptic seizure.

Don't quote me on this though...it was all very confusing to me. I'm just glad they diagnoised it so I could work through it.
Now just to stop those dumb epileptic seizures.

Thanks again for the welcome!
Katie

 

[serendipity324]

Hi Katie.
Welcome!
I'm new to my seizures and to CWE too, but I just wanted to say hello and welcome you. I'm exploring and learning about this forum and epilepsy.

My husband is a Packer fan..after being an Eagles that is. well was before this embarassing season. ugh. anyway, he has his cheesehead and old jersey..lolol

 

[momof3boys]

Hi Katie! Welcome to CWE! I too, am a HUGE Packers fan!

I have left temporal lobe epilepsy and have had grand mal and complex partial seizures through out the childhood years. Last year for the first time, I got to have a VEEG and after being taken off of Keppra XR and Carbatrol ER, I had alot of simple partial seizures during my VEEG. But my dr said that He can see epileptic spikes and activity on the EEG, he didnt know if what he was seeing on the Video was true epileptic seizures. So he referred me to a psych dr, who sat down with me and we discussed what stresses I may have, if the Keppra XR, which my dr had put me back on after the VEEG was helping etc. One thing she did tell me is that if the seizures did stop with taking the Keppra XR, then what the dr saw was really epileptic seizures. She explained to me if they were non epileptic seizures, the Keppra XR wouldnt stop them from coming. They would come when they wanted to no matter what medications I was on. I was off all medications for four days, then put back on Keppra XR and returned home, within a few days of being back on the Keppra XR, all my seizures stopped. So, I know what you mean when you say you went to a psych dr about the non epileptic seizures. So far, its been almost a year since my VEEG and the Keppra XR is holding me good. I did find that if I dont get enough sleep, I will have that funny feeling before a seizure starts, which is a warning to me, that I need to get more sleep. So my dr has told me about Melatonin and Im taking 1.5mgs at night to help sleep better. Since taking that, Ive had no seizures!

 

[momof3boys]

I was reading your last post better and saw how you described your non epileptic seizures. My seizures I had during my VEEG were almost like that, but had other stuff with it too. I would get this weird feeling before the seizure, like something wasnt right. Then my heart would begin to race, I get a feeling in my stomach like I just wanted to throw up, and then this "fear" came over me and I would get tingling feelings in my left foot and hand. The tingling feelings would go all the way up my body, to my head where it felt like a million needles were attaching the roof of my mouth. As the tingling would go up my body, my head would turn to the right, and my right and sometimes the left too would jerk. I would stiffen up so much that after the seizure was over, I felt like a truck had hit me. I was so sore. During the jerking and stiffening, I couldnt move, but could hear what people were trying to say to me. Most of the time i would respond by nodding my head, but the seizure got so intense that I just had to wait til it was over to talk to anyone. Afterwords I felt tired, and had a headache.

Did you have any symptoms like this along with the jerking during the seizures?

 

[acpollard2010]

hi katie i have both of those still having a hard time understandand the nonepileptic ones they remind everybody i know of gran mals i have besides i can control some movements and my memory is even more out of wack.neither of mine are under control

 

[matlock]

PackerFan12/Katie:

I am sorry to hear about your unfortunate condition: being a Packers fan! I'm a Falcons fan which is generally prefaced by the phrase "Long Suffering. (You're welcome for us letting Farve get his heavy partying days out of the way in a Falcons uniform before leading you to glory...)

Kidding aside, I'm new to all this and this site has been a great place to get feedback and support so welcome from another newcomer!

 

[huskymom]

Hi Katie and welcome!

We will try to not hold the packer aspect of your life against you

I have intractable E as well. I just consider myself "special", but not in the short bus kind of way!

 

[PackerFan12]

Its so nice to hear such a response from all of you. As sad as it is, it is nice to know I am not the only one with these problems.
Kristen-you describe my Non-epileptic seizures almost to the T. My heart would start to race among the other things you mentioned. In my EEG monitering, there was occasional epileptic activity--which showed my epileptic seizures were present. But other then the occasional 'spike' there was nothing while I was having a non-epileptic.

You know, its so weird. I cried when they told me. I was so afraid of what people would think--including my family and friends that love me the most. I think this 'fear' helped me work through it all the more quickly.
To those of you that are currently struggling with these non-epileptic demons, I totally understand. And I have the upmost compassion for you as I have been there and it is SO HARD. They tell you, you can control this, its 'fake' but you feel as if you have absolutly NO control.

As for all the comments from you NON-Packer fans, sucks to be you! You all made me laugh this morning when I read your thoughts on the Green and Gold. I've found most people either LOVE or HATE the Pack and I am on the LOVE side. My Bedroom--painted Pink--is packed full of Pack Pictures...among the latest, My Packers Stock in a frame.

Katie

 

[momof3boys]

Kristen-you describe my Non-epileptic seizures almost to the T. My heart would start to race among the other things you mentioned. In my EEG monitering, there was occasional epileptic activity--which showed my epileptic seizures were present. But other then the occasional 'spike' there was nothing while I was having a non-epileptic.

That was the same with me. My dr could see the Epileptic spikes on the EEG and said he didnt feel comfortable taking me off two medications, so he got rid of the Carbatrol and left me on the Keppra XR. That was in March, then the next month, he tried to switch me over to Lamictal, but I had an allergic reaction, and while doing that, he slowly tried to wean me off the Keppra XR. They had to switch me over to the regular Keppra, which was hell because it caused really bad headaches. But as I went slowly off the Keppra, (I was being weaned 250mgs a week for 12 weeks til I got completely off) I got down to 2500mgs from the 3000mgs I was originally on, and I had tingling in my hands and feet all the time. Just like what was going on when the seizures would start during the VEEG. I didnt feel normal either. My dr thought it was ok to leave me on 2500mgs when he found out I was having an allergic reaction to the lamictal, so I was on the 2500mgs for about a month. Talk about not a good time. I had a follow up appointment scheduled for the end of May and when I went back, I told them about the tingling I was having and the dr agreed to put me back to 3000mgs of the Keppra XR. Within a few days of being back on that, all that tingling went away. So the dr believes it was seizure activity wanting to come on, since I was going lower in dosage. But since being back on the Keppra XR at 3000mgs things are going alright. As long as I get enough sleep, things are good.

 

[Ruth]

Hi PackerFan12,

Glad to have you here. This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

You have come to the best and largest forum. You will find anything you want to, just go into the nooks and crannies. You will be an asset to the forum.

I was diagnosed with epilepsy when I was 6 years old. That was 62 years ago. It was true epilepsy.

I do not know when, but I was diagnosed with NEAD (non-epileptic attack disorder) as well. It is due to stress. It is seizures. I am on medication for both.

Have you had a Video-EEG to see if you have both?

I live on the West Coast. The Green Bay Packer's are out for me.

Again, welcome to our forum. I look forward to your posts and reply's.

 

[PackerFan12]

Ruth-
Thank you much for the very kind welcome! Wow, 62 years with epilepsy. I thought my 15 years was a lot. My True form of Epilepsy has been uncontrolled for 15 years--not all that long compared to your 62.
They did do Video EEG and determined that I DID have both--I was put on anxiety meds to help with the Non-epileptic (which I am now off) and I take Keppra, Tegretol, and Vimpat for the epileptic seizures. They say the Non-epileptic ones are 'in remission' but I like to say they are gone. I just hope they stay gone.
Thanks again for the welcome....I have to ask, did/does Bernard's wife Stacey have epilepsy too?
Katie

 

[Ruth]

Bernard does not have epilepsy. Stacy has epilepsy. Bernard started the forum for his wife Stacy. That is why I said that it was out of love. He is a very caring person to everyone in the forum.