Hello all!
I have missed everyone! :'( I had a bit of a scare this weekend.  On Saturday evening I had what is being named a complex partial seizure or temporal lobe seizure.  I have had a tonic clonic and simple partial seizures.  However, this seizure was much scarier!  It was very frightening for myself and especially my husband.  At the time he thought it was a stroke! :o

I was telling him about my day and then said I felt strange.  Then I stared off into space for several minutes.  Then I kinda' came to, but had trouble focusing and speaking.  I vaguely remember telling Mark that he looked like leather, like a monster with black eyes.  I remember feeling very isolated, disassociated, scared and completely vulnerable.  Mark said I then fell asleep and talked in my sleep.  He then decided to take me to the ER and I had trouble walking.  They said it was not a stroke or TIA b/c I had too many different symptoms--trouble talking, seeing double, trouble walking!  They have increased my Keppra and so far so good.  

Anyway, just wondering if anyone can share their own experience with a complex partial seizure. [smiley=huh.gif] What do you think lead to it?  How did it feel?  How did you act during the seizure?

Thanks and take care, ;;D
Stephanie

Stephanie,

That sounds soo scary! I'm not too familiar with seizures in general, but I'm now looking for more info on what you had...complex partial seizure or temporal lobe seizure.  How did they determine what type of seizure it was?  Any specific tests or was it determined by your symptoms?  Is the increased Keppra helping? Also, did they say what may have brought it on? (oops, I see you're asking the same question above)

Big  [smiley=hug.gif] to your husband for being so observant and taking you to the ER!  

Thanks for sharing this very scary experience with us!  :o  Scary too because you didn't even know you were having it.  Anyway, you're in my praryers...I hope you're feeling better!
[smiley=hug.gif]

Take care,
Shan

Hi Stephanie,

I found many websites on complex partial seizures and wanted to share one site's definition of it in case others like me aren't too familiar with it:

Complex partial seizures(temporal lobe): Consciousness is altered during the event. Patients may have some symptoms similar to those in simple partial seizures but have some change in their ability to interact with the environment. Patients may exhibit automatisms (automatic repetitive behavior) such as walking in a circle, sitting and standing, or smacking their lips together. Often accompanying these symptoms are the presence of unusual thoughts, such as the feeling of deja vu (having been someplace before), uncontrollable laughing, fear, visual hallucinations, and experiencing unusual unpleasant odors. These interesting symptoms are thought to be caused by abnormal discharges in the temporal lobe.
http://www.neurologychannel.com/seizures/types.shtml

Take care,
Shan

Stephanie,

I'm very sorry to hear you had a scare.  How frightening it must have been for Mark to watch you go through that, and frightening for you to have the feelings of isolation, vulnerability, etc.

Have you been in touch with Dr. Steinberg's office?  It would be interesting to hear their "take" on it all.

I'll be hoping for no more recurrences!

[smiley=hug.gif], Jill

Shan,
Thank you for sharing that info and link.  As you read in the info, the symptoms vary widely, but some sound like what I experienced.  I guess that is how they identified what type I had.  I am having a second EEG this coming Monday.  

You are right in saying it was scary.  I will be sure to give huge hugs to Mark, from you, for caring for me and taking me to the ER---and not freaking out which is what I would have done.
Take care, ;;D
Stephanie

Hey Jill!
I have contacted Teresa about the seizure.  I will let you know what they have to say!  If you remember, I was having those spells after my 2nd surgery.  I think this was a basically a more serious verion of those.
Good to hear from you, ;;D
Stephanie

Stephanie,

I do remember those happening.  You just looked so good the last time I saw you, I didn't think you'd have anything but smooth sailing!  Wishful thinking perhaps, as it seems most people have some residual following surgery . . .  (I don't want to say this too loud, but Tara has been TIA-free since January, and we're excited about that!)

It will be good from an education standpoint to hear how your episodes tie in (if at all) with your MM.  I will be anxious to hear what you hear back from Teresa.  Until then, take care - hugs to both you and Mark.

Jill

Hey Steph,
So sorry to hear of your frightening experience. Hope everything settles down soon - you are in my thoughts
Wonderful husbands are a blessing - I have one of those too. (I wouldn't be alive today if it wasn't for Tony insisting on every test known to man!!)
Best regards from Australia
Moira

Stephanie-

I am not sure if I had a complex partial seizure but between surgeries i did have a seizure and i can relate to how scary it was. It was horrible. I had already fallen asleep for the night and woke up with doctors and nurses all around me trying to talk to me and all i could say was i cant breathe. All i wnated was to breathe normal again it was scary. That is the only one that i have ever had and count my blessings that it was the only one. So sorry to hear about you having one and hope for it to be the last one. Take care!

Christy

Hi, Stephanie.  I'm sorry you had such a frightening experience.  I am used to witnessing seizures from a parent perspective, so I don't know what it would be like to have one myself.  I can only imagine what a scare that must have been.

Our daughter has had a few seizure types, all of them partial onset (from a focal point).  It can be difficult to pin down exactly what type you have, since there are so many different experiences.  Daphne was diagnosed with a specific seizure disorder (infantile spasms) before her MM diagnosis. She never completely fit into the category (her EEG pattern was not consistent with infantile spasms, and her body movements during siezures were not "classic"). Now, Dr. Steinberg and team feel like she never had infantile spasms... very confusing!

I do know that Keppra is supposed to be a good medication for partial seizures.  I hope the increased dose does the trick.

Daphne had a break through in seizures a few months ago, which finally resolved after several weeks.  I have no idea why, but I like to think that it was due to the process of blood flow returning to her brain, and that the increased amount of oxygen/blood caused a temporary increase in neuron firing.  

Ha ha  [smiley=laugh.gif]  I always try to spin things to the positive with Daphne.  But, who knows, maybe I'm right  ;)

Jenny

I totally agree with your theory about Daphne's nuerons!  I attribute everything to my new and fluxuating blood flow, headaches, lack of headaches, seizures, lack of seizures, clear-headedness, fogginess, and so on! ;;D It is a marvelous process b/c we can blame just about any symptom on it and have the symptom be a good sign that the new blood is flowin'!

I briefly read about infantile spasms...how scary that must be for you.  What did Dr. Steinberg and the team decide she was having?Have they mostly subsided since the surgery/ies?

Jill,
I wanted to let you know that seizures can be caused by brain trauma, including brain surgery and strokes.  After I had my big, generalized seizure in 2003, my nuero. told me that 30% of stroke survivors have at least one seizure--due mostly to scar tissue. Based on this info, it would not surprise me if MM survivors commonly have seizures. So , yes I think MM and my seizures are related. You did ask me this question, right?! [smiley=worried.gif] I think I need to go to sleep!  [smiley=snore.gif]

Take care all and sweet dreams,  [smiley=sleep.gif]
Stephanie

Hi Stephanie,

Sooo sorry to hear about your ordeal.  :( I can't imagine how your husband feels as well. Tell him I can understand his fears and concerns.

Bob had 2 seizures 2 days in a row after his surgery and I was at work both times. He laid on the floor for at least 2 hours each time. I felt so bad for him and guilty as well. I had always called him every hour to just check on him but the first day it happened I was in a meeting at work and the second day I had went to lunch and when I got back I was so busy I couldn't call until about 2:00.  :'(

We thankfully had found out though that it was the medication his local doctor had put him on to try and help him with his headaches. He hasn’t had another one since he has been off the medication.

I have noticed others post on the board as well stating they have seizures, TIA or other things even after the surgery.

Since my husband only had migraines before his surgery, is he likely to have siezures/TIA's??? We would appreciate any information from anyone who really didn't have any symptoms BEFORE surgery. I would really like to know if he is at risk for anything now AFTER surgery???

The reason why I'm asking is he is driving.

Terry

Hi Steph,
 Sorry, about the ordeal you had to go through. Thank goodness your Husband was around for that situation.  I hope you do well in the future. Did they say if this could happen again?  
                                 Good luck  Lena...........

Mandy had a seizure out of nowhere a year or longer after her surgerys she had not had anything since the surgery then one morning she was on the floor next to her bed and was totally unresponsive her eyes were open but she couldn't here us or even hold her weight of her head up. We cleaned her up as she cannot do this herself all the way normally, and was ready to take her to the hospital and she just wanted to go to sleep so I laid with her for 2 hours while she slept and she woke up like nothing happened she asked why I was in bed with her and how come she had different clothes on. She did at one point about 15 mins into the seizure start to answer questions slowly but gave her address of where we used to live when we asked her her address Dr. Steinberg......actually Theresa said there is so much scar tissue from the surgery that it is common for seizures to happen, her neurologist put her on Carbatrol and she has had no problem since that has been about a year now. I sometimes wonder if she needs to be on Carb. still as it only happened once. She takes so much medicine I just wish we could get rid of some of it. That was her one and only seizure.
                               Nancy