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Posted 2/24/2005 10:55 PM (GMT 0)
Hi everyone...me again you hve all been so patient with all my questions so thank you here I go again. I just had that weird feeling you get before big seizure liek i have before CP very shaky nauseous and knew I had to gt on floor so I got on hands and knees then something said to lie down so did, then fro then on I was in semi-conscious state??? eyes were sorta closed...flickering...couldnt keep them open thats for sure....I knew where I was but I didnt if that makes sense??? laid there for about 15 minuts maybe 10? shivering then and afterwards...very disoriented and groggy nauseaus still....thanks for help...with all the nightime weird stuff this is really freaking me out ....Sheena
Posted 2/24/2005 11:33 PM (GMT 0)

Sheena-

Girl, you've just got to get those neurons under control!  sad   I'm sorry  you are having a yucky episode!!!  I'll bet the lack of sleep and stress thing are really contributing to everything...  If I was there I would give you a giant hug!  ((((((HUG))))))    I know sometimes when I have the feeling it's going to "happen", my vision starts to blur and suddenly time and space seem to move really fast- like warp drive.  It's all I can do to sit down really fast.  Afterwards, my brain is scrambled  confused  !   I can really relate.      Hang in there, Sheena!!!!

Posted 2/24/2005 11:44 PM (GMT 0)
Goodwitch-hi! thx for reply so quick...you think just a cp then cuz I was semi-consiocus? wow I am scrambled....sorry...my hubby be home in an hour or so then I will feel much better! thx for listening your always there for me!!! (((Sheena)))
Posted 2/25/2005 1:25 PM (GMT 0)
Hi Sheena...

You are having some tough times there sad ...Dont panic... I would say the same too.. When I was not having much control,  I was having the same type of episodes... I would all of a sudden just say .. I have to go lay down... I would lay down and just be frozen like.. just feel, like I was in the twilight zone...I cant say my vision was messed up, because I would close my eyes...But I always managed to get to bed...I always got disoriented after and would nap at least a half hour... then after that for a while I was just wiped.... I am far from a neurologist... I would say from your explaination it sounded like a CP... But again.. I am NOT a doctor :-) ... You should give yours a call... You seem very unsure of what is going on in your body, I dont blaame you !! It is scary !!!  I would call though....

I hope you feel better today !!!!

Have a good one :-)

Posted 2/25/2005 9:56 PM (GMT 0)
Hi Minnie66; thanks for your help! What you described is how I felt like I needed to lie down and keep my eyes closed...they couldnt stay open by themselves....lst night after my hubby came home I fell asleep sitting straight up! I was zonked and today same so am almost sure CP...will see neuro on Monday and let him know....I sure hope they straighten this out soon lol!! But this is the first cp I have had since I left work and have been on med leave so that is better right? Something positive....at least the sp's dont scare me as badly! Thanks for your help! take care! (((Sheena))) tongue
Posted 2/28/2005 12:53 AM (GMT 0)
Hi,
This sounds all to familiar....I've been having the same kind of seizures. Feeling spaced out, just making it to the bed, in and out of it...not a full blown seizure just feels like you're right on the edge and your body doesn't know what to do. Afterwards...very cold and nauseated, splitting headache and sleep for hours. Many times lately it started with a outburst of crying for absolutely no reason at all. I was on a website about seizures last week and found out these type of crying seizures are called Gelastic seizures and they are migraine related.
cm
Posted 2/28/2005 6:57 AM (GMT 0)

Gelastic Seizures, wow,...I'll bet that kind of seizure is often misunderstood as emotional outbursts and temper tantrums.  Can't imagine how many people go undiagnosed or treated for other conditions. 

Speaking of symtoms...when I get simple partial seizures I feel like my hands are really large- like the size of the "Hulk".  I call it my "Hulk Hands".  I also feel like I'm holding the world's largest beach ball at the same time.  My mouth and teeth have the same large sensation.  Sometimes I can't talk very well when it's happening and I feel panicky.  Do any of you have this large sensation in your body feeling?   Wondering what you are experiencing with yours. ...

Sheena- Aren't you going to the neuro Monday?  Hope you have a successful visit  :-)  .                Glenda

Posted 3/3/2005 12:41 AM (GMT 0)

Hi Goodwitch and c. michele--sorry it took me so long to reply--I have been having wicked migraines/seizures lol!! Gelastic seizures eh? I will mention that to me neuro next time....get this one.....here is how my visit went: I took my mother in law with me for moral support as I usually get emotional and nervous when I go....so she was so helpful and wonderful! He says that I am a mystery to him.....he does not know why I am having so many different types of seizures....if it is me the E the meds.....that are giving the symptoms.....he does know that it is scar tissue on the temporal lobes on both sides of my brain that is causing the E and the CP seizures.....so that is the cause....surgery when I was 5 yrs old (craniotomy). So he said that I can stop Keppra now and start new med with the tegretol and topomax...or keep on Keppra for 2 more weeks and see how I do and if still feeling crappy then we start new med.....problem is we are running out of meds to use and the next option for me is SURGERY>

so......I am on 1 yr waiting list to see if I am suitable canditate for surgery. My MIL liked him....but she said that she thinks he does not know why I am having so many seizures and what is going on at night time......so I am a mystery?????  Good news...my IBS has settled down finally.....bad news....I had huge seizure in car after neuro appt with MIL (CP) and then last night in bed I had huge migraine and fell asleep..woke up and my legs were kicking up and down rythymically and my eyes were opening and closing the same.....really freaked me out.....I called for my hubby that I was haing a seizure but I dont know what it was for sure??? Have you guys ever had anything like that before? I also got my period yesterday which leads me to wonder if my seizures are also triggered by hormones but my neuro says that they are triggered by scar tissue so why is everything setting them off??????????

I am so sorry to ramble/freak out/go off/I am just weirded out!!

whover asked if anyone felt like their hands ever got huge before a seizure.....yes!!! I get that! and my mouth gets all weird sometimes too. LOL! Guess i am a reall mystery woman!! LOL but I will never lose my sense of HA HA!! How are you guys doing? Hope you are feeling well and seizure free! take care and sorry to go on....... tongue (((Sheena)))

Posted 3/3/2005 1:23 AM (GMT 0)
EERRR !!!!  It must be hormones !!!  I cant write much @@ My head feels like it is going to explode !! But I am actually laughing... and had to write back  tongue .... You see, I also noticed , in the past maybe 6 months or so, the day before, the day after and maybe a day or so, before that time of the month mad ... MY head kills ME !!!  I always get headaches... But nothing like these... that is why I havent written !! As a matter of fact I gotta go !!  devil .... I should feel better by tommorow, there was some good posts on here :-)

hope all is well... Gotta go pop some more advil !!! 

devil  ...................................OOOWWWWWWWW  !!!!!!!!

Posted 3/3/2005 5:48 AM (GMT 0)

Hi, you guys are so funny! You make me laugh out loud!  So, Sheena, from now on I will think of you as "The Mystery Woman".    Hey, maybe your seizure episodes are triggered by the darkness? or horizontal position?  I'm sure stress has something to do with it.  I know that hormones are DEFINITELY a trigger for many women.   Maybe you should try to meditate or do yoga or something?  I was thinking of trying that.  I've heard that helps with stress.  I don't know if it helps with seizures at all, but if it helps with stress I think I am going to try it.

I've had two more of those simple partial seizures where my hands were feeling really large again.  And I noticed that both times it happened I was squinting into the sun!!  I was waiting at the bus stop with my son and the sun was coming up at such a sharp angle that I had to squint the whole time we waited.  So now I know what one of my triggers are!!!  Hurray!  Now I know something to avoid!  I'm going out to buy me some dark sunglasses!   tongue       Glenda

Posted 3/3/2005 4:39 PM (GMT 0)
Minnie! How is your aching head? I hope that your advil worked because mine took

forever to work I thought it said extra strentgth on the bottle???? You guys wont believe

what happened this morning!?! I think the advil affected my IBS because I didnt make it to the LOO this morning!!! OOPS!! NOw thats a mystery!! see its a good thing to have a sense of humor and an ever better thing to have a hubby with a sense of humor!!!!

Hope your headache is gone.......mine is in remission but my neck is still really tight not a good sign LOL!! take care and have a good day...... tongue   Mystery Sheena

Posted 3/3/2005 4:44 PM (GMT 0)
Glenda....aka....Goodwitch!

Good morning...glad you found a trigger thats awesome! Get some cool shades! Maybe I should too and that would help my headaches.....The advil is obviously not helping the IBS LOL! Soon I will need some Depends. Then we will be in real trouble LOL!! I think you guys are right about the hormonal link too!! I had 2 or 3 cp's within 4 days of my period. I have been trying some meditation and breathing exercises....they are really relaxing....I used to do Yoga I just have to find my tapes! lol!! Have a great day....talk to you in a bit!! tongue   (((Sheena))) aka Mystery girl

Posted 3/4/2005 1:56 PM (GMT 0)
AHHHH !!!  Head feels much better :-) .... Ohh , I hate to sound so forward !!! But oh Yes !! I know Hormones are a link !!! LOL !!!  What to do about it , is another thing, I wish I knew what to do about it !!!!  But thanks for asking, my head feels much better today, I dont think the advil helps much either, I actually took 3 yesterday morning, I never take that many at a time, but I was desperate, It may have helped a bit, but I think when I get those headaches nothing helps !!!!

I am the same also , with the sun... I get made fun of !!! I have room darkening shades in my house !!! I cant handle the bright sun !!!  They call me the wolf lady !!! I like dark !!! I could picture us outside with those BIG BLACK sunglasses !!!! cool .... Alright thats it !!!  Depends, BIG BLACK sunglasses, something needs to be done here !!!!  We are a little too young for this !!!! :-) .......

Posted 3/4/2005 2:08 PM (GMT 0)
Hello Minnie,

Just wanted to take a minute and share my sucess story with you on my brain surgery for epilepsy.. On June 11, 2005 I will celebrate my third year of being seizure free. I had complex partial seizures for 30 years of my life, I had been on many anti-convulsants, but they didn't control my seizures for very long before I would have breakthrough seizures. I would have the surgery all over again, it has truly changed my quality of life. I can fianlly drive again and not feel anxious that I might have a seizure.
I am now involved with the Epilepsy Foundation and go to all support group meetings and share my story about the surgery with those who might be considering the surgery. I also go to schools and give Epilepsy awareness presentations which I have just started doing, I have my first presentation on March 16th. The teachers really need to be educated about epilepsy, I remember being in elementary school and have a seizure I didn't have a clue what was happening to me, and the teacher didn't even know about it. If teachers know what to look for and what to do if a child has a seizure it will make such a difference in the child's life. I never had anyone to talk to about my epilepsy all the way through school I never told a soul, I was afraid if anyone knew they wouldn't want to be around me. I want to stop the stigma associated with epilepsy, and I think the schools is a good place to start.
Minnie if you would ever like to talk to me about the surgery, or the vns please feel free to e-mail me at [email protected] I am more then happy to share with you my experience and any questions that you may have.

Many Blessings,

Mercyme/Cindy
Posted 3/4/2005 2:14 PM (GMT 0)
Thanks Cindy !!!  I will probably take you up on that !!!  I am going in in 2 weeks for my video... cant wait !!! I am hoping I am a candidate !!!!  I want off meds sooooo Bad !!! I will write to u soon !!!  I been behind on the comp lately... My dad is very sick now.... I been trying to see him as much as possible...  I will write soon !!!  Thanks !!! :-)
Posted 3/18/2005 5:00 PM (GMT 0)
I also get that "large feeling"...I call it my alice in wonderland seizure.

I can feel myself leaving my body, i am stiff as a board. then i feel like i am off to the right of the room...always the right, and up in the corner, and then i am as large as the room, looking down at myself....

it took me a couple of years to tell my doctor this one, i didnt want him to send me to the "nut house".

I have a long list of seizures that i remember. And a long list of the ones that my boyfriend does witness, and I have no clue...no memory of.

If I have those late at night, i'll feel like I have a hang-over the next day....yucky.

Pam

 

Posted 3/18/2005 5:31 PM (GMT 0)
Pammy,

 

I have similar experiences almost everyday.

 

I get this about once a day. I feel like I'm looking down on myself trying to control my actions from above or when I'm doing a certain task, it feels like someone is wispering in my ear and telling me what to do but there's nobody else around or if I'm sitting idle, I feel like I'm doing something.

 

These feelings I've been getting are really starting to scare me, it's hard to describe, my wife thinks it's from stress but I differ.

Could  this be a form of a partial seizure?

 

I've had EP for 25 yrs. but only started getting these feeling about 2 years ago.

I didn't tell my Doc. because he might think I'm nuts.

(Maybe I've been on the meds too long)

 

Randy
Posted 3/18/2005 5:47 PM (GMT 0)

Pam and Randy-

I feel better knowing I'm not the only one that has the larger than life feeling.  I only experienced this recently since I had a medication change.  My neuro said he thought that it was simple partials since my complex partials were suppressed lately. 

I do have the out of body feeling however and I feel really scared when it happens.  I am somewhat aware of what is happening and  I can't help the feeling of coming out of my body and being pulled out of the top of my head.  It's all I can do to grip on to whatever I can to prevent myself from floating off and never coming back - like a helium balloon. 

I, too, was scared to tell anyone for a long time due to the reason I thought I was going to be thought crazy and thrown in the nut house.

To this day, I don't like heights or looking over balconies.

Glenda

Posted 3/19/2005 7:04 PM (GMT 0)
Lets see....

smelling something burning...not toast, but something..., hearing my name being called, these two are usually at night...wake me up.

a "bark", just one though...lol and it's loud

a feeling like my head had fallen asleep...like a foot.

oh, yes the alice in wonderland thing...

lips numb...nose numb...

loss of time.... no idea where i am.....

memory loss....oh forget my short term memory...

drop to the floor...that's a good one.

in mid sentence with some one....im here and im not

im sure i have forgotten a few...then there are the ones that i dont remember, that knock me out.

saw a triangle in the window, then the right side of my head was buzzing, that is all i remember...had a P.M.

Is it stress related ?....for me I have no clue, I have been on the sofa eating Godiva watching a movie and had one...lol

Headaches....but not pounding, sort of feels like someone just hit me.

Very very cold when i have a BIG seizure, I have been told I am cold like a stone...anyone else ?

When I come out of it, i do warm up.

Now the depression.... who needs it.

Thanks for listening..

Pam

 

Posted 3/19/2005 7:14 PM (GMT 0)
Oh...sorry to post again....

I had all of these episodes prior to any medication.

I wonder sometimes if my meds do wacky things to my brain also.

But all of the strange seizures were before meds.

Being over tired, "time of the month", not eating well,

I notice trigger my seizures.

Does anyone ever feel as though they will have a seizure.... there are times I will feel like this all day, but never have one.

Like when you feel a sneeze coming, but dont.

Pam

Posted 3/20/2005 3:26 AM (GMT 0)

Pammy-

Hey!  I've had that feeling a lot... like I just knew I was going to have a seizure all day.   I never thought of it like that before...when you feel a sneeze coming but you don't. I'll have to remember that one.

Deja Vu....

I'm suddenly aware that I've had the same conversation before or maybe several times or even a hundred times before.  In fact, the feeling is so intense, that I can even sense what is going to be said before it is said. 

I'm watching a tv show and even though it's a show I've never seen before I know what they are going to say and do before it happens. 

Even myself... as strange as this may sound... I can predict my every move... I reach down to scratch my knee or tie my shoe... I know I have sat in this chair and done this exact thing before and I can predict exactly what I will do next.  Noone around me seems alarmed by the repetition of the events.  But I am. 

I've done it so many times before...

Anyone else care to share?

Posted 3/20/2005 2:31 PM (GMT 0)

Oh yes....I knew I was forgetting some....

Deja Vue....

I should get a hot line where people can call and I tell them what is going to happen....lol

I never get lottery numbers....darn

Brain is a complex organ....so many odd seizures

So many odd feelings

When family ask "how ya feeling" ?...I just say...great

they dont want to hear about the "dog barking"...lol

My thoughts are with you all.

Pam

Posted 3/20/2005 3:23 PM (GMT 0)

Hi All,

It's been awhile since I've been able to visit.  Much of what you have said sounds so closely related to migraines. I've had migraines since I was 26 and the first one I ever had truthfully I thought was a stroke. I was in the shower and reached down to pick up the soap when I went completely blind in my left eye. I had them periodically over the years, but it wasn't until I was in my 30's that I started to have them like clockwork right before my period (almost everyday for a week). I never really mentioned again to any Dr. since the ER Dr. seemed to think it was a minor thing that Tylenol would help. Until one day I mentioned it to a female Nurse Pract. and she said let's put you on Fiorcet and see if this doesn't help when you feel one coming on. Well, it does help and when I get the first sign of pain I take it. But, lately I feel like I'm living on it. Between the frequent seizures and migraines it's been the only thing that helps relieve the pain. You see after I have a seizure I have a splitting headache and I can certainly relate to the freezing cold feeling. It happens to me alot as well. So, you could say I'm a cave dweller too...no light, no sound, not hungry. I was so embarrased when my cleaning lady came this month and I had blankets hanging on the windows in our bedroom. My son forgot to tell me she was coming that day and I went off to work leaving the room like a cave. She left me a note saying I hope all is well. She does know I suffer from seizures and can generally tell if I haven't been able to clean as well as I normally like to throughout the month. Off the subject.... I can tell you that hiring a cleaning lady once a month was the best thing I ever did for myself. $50/mo. is a small price to pay for the peace of mind she gives me. Due to my illness I can do all light cleaning but anything that requires chemicals I need to stay away from, it's not worth the price my body pays. I've found that one of the things I had to come to terms with in my illness is that I'm not going to be able to be the person I was, close to it but never the same. I've had to deal with the fact that my energy level is no longer the same and the things that I seemed to be able to breeze thru take a little more time. Only those of you on the website would know how difficult it is to make it thru a full work week without total exhaustion by Friday. I never told anyone that until just recently I shared that with my husband. Sometimes I think we are in denial about certain aspects of our lives until they go on for so long that we are forced to deal with them. When I was controlled I never even gave this a thought, but recently my feelings have changed. We've decided that everyday that I don't have a seizure or migraine is a day to celebrate. I'm back to baby steps....but not forever.

cm

Posted 3/20/2005 5:22 PM (GMT 0)

So well put. Baby steps.

Several years ago, My doc thought Migraines, so we tried different meds....nothing.

I have found with Keppra, I lost my appetite, and can go all day not knowing if I ate or not.

Now I write it in my journal, along with everything else.

Pam

Posted 3/31/2005 12:55 AM (GMT 0)
 I have suffered from Bad miagrains for 3 years trying all different kinds of meds. Finally In Feburay I had a hsyterctumy for other reasons and they found a cyst on my only ovary i had so my hormones were all messed up! Then i was put on Premarin the miagraines ARE gone  and i am regaining what i have of my so called normal live ! ( I have Epilepsy skull which is robbing my mind)
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