Mentally aware during seizures

[gamerchick89]

Hi, I'm checking in for the first time, and I'm interested in hearing if there are others who have the same kind of seizures as me. I'm a 37 year old gal from Maryland. I was diagnosed when I was a child and had a seizure. They did EEG testing. What is strange about my seizures is that I am sort of locked into my mind without control of my body. For example, in my mind I will be thinking, "Oh no, here it comes again. I hope people don't freak out." But my body is all twitching and jerking, like my foot or my facial features, without my control. I get a seizure warning that feels like a sickening rush, best way to describe it. It's like I know something bad is coming and I have to get to something soft like a bed. Then it's like little storms across my body.
Last night was a really disturbing night for me because I had several of these smaller seizures back to back, but I was still totally mentally aware. Is this sounding familiar to someone else?
I am not currently on medication. I used to be on Keppra, Dilantin, Neurontin, and a whole host of other things that my neurologist at the time was trying. After a while I grew tired of various side effects and just stopped going to the neurologist. Last night kind of made me want to start the process again.
Anyway, nice to meet you all.

Kara

 

[Abynorml]

Sounds like simple partial seizure, your not alone, ive been getting the same thing lately, I hate the feeling of dread that happens right before one happens. Hope you get yours under control I'm trying to do the same.

 

[Nakamova]

Hi Kara, welcome to CWE!

The nausea and anxiety auras can be simple partial seizures, and the twitching called myoclonus can accompany them. I can understand getting tired of the medication merry-go-round, but if you think your seizures are getting worse, it's a good idea to seek out treatment again. (Untreated seizures can potentially progress if the brain gets in the habit of seizing.)

Do you keep a seizure journal? If there are certain factors that are triggering your seizures or making them worse, a journal can help identify what those triggers might be. If you can, write down when your seizures occur, what time of day, how long they last, and what happens during them. Make a note of any possible triggers -- triggers can be things like fatigue, low blood sugar, low blood pressure, alcohol/caffeine/MSG/aspartame/gluten, fluctuating hormones, photosensitivity, illness/infection, emotional stress, etc.

Best,
Nakamova

 

[LJ-Bain]

These sound really familiar to me! I get the brain fuzzies and then I can't talk or move and get really weak, then my muscles tighten and/or twitch a bit with some drool and/or lip smacking and I get a right sided facial droop afterwards. It takes me 1/2 or so to recover and I'm exhausted afterwards.
Totally like my simple partials. Not fun at all.
It's like watching a movie but I'm the star and not the director.
I'm really calm during them too and think ok, here we go again. I try to get to a bed too if I have time but sometimes the floor I'm standing on will have to do.
Were yours ever connected with your cycle and hormones? If you're 37 (I'm 36) and I've heard that people with epilepsy often begin menopause early maybe you're approaching that time of your life, the pre part of menopause when hormones start changing again. Just when your body gets used to things. I just finished nursing so I think my hormones are out of whack.
It might be worthwhile to see a neurologist again! As our bodies change our reactions to meds can change too. Maybe give it another whirl?

 

[gamerchick89]

Just read all of your posts, and first of all thank you for responding. I have never kept a seizure journal before. Most of mine are not long after I got to bed, or an hour after I fall asleep, or right before I wake up. I could still log what happened in that day, though. I don't have any other medical problems that I am aware of.
However, I am in early menopause, so I can see how hormonal fluctuations might have something to do with seizures becoming more frequent.

LJ-Bain, what you said about watching a movie sounds so familiar. It's like an alien force taking over your body and you're just along for the ride in your head going "Dum dee dum dum, are we finished yet?" I always wondered if there were others like me out there, because all of the other epileptics I ever met in school and growing up had seizures where they lost consciousness. One thing that strikes me about mine is that there is a real feeling of electricity there. Like when you take a pillowcase out of the dryer and it still has static, and when you lay your hair on the pillow you can feel it crackling.

Thank you all for the welcome. I do think I'm going to go try and see if there are any new medications on the market. I haven't been medicated since 2002.

 

[momof3boys]

Sounds like what I have when I have seizures. I was born with epilepsy, but wasnt dx'd with it til the age of 18 months old when I had a grand mal seizure. My mom saw me staring off at times and didnt know what was going on. She said I would smack my lips, and my eyes would be blinking non stop. At the time she didnt know they were seizures, til after I had a grand mal and was told about what seizures were.

Anyways, back to my reason for posting here... :lol:

In March of 2011, I got to have my first VEEG. I was taken off all seizure medications. Keppra XR and Carbatrol ER. Not slightly taken off, they just stopped them cold turkey! Talk about a bit of a shock! The first day I was ok. But then came the second day and I started having seizures. All my life I had either complex partial seizures or grand mal seizures. All those times I wasnt consious through out the seizures and dont remember anything that happened when I came to.

When I started having seizures during the VEEG, I was aware of what was going on. My mom was with me and she didnt know what was going on. She was expecting me to have a grand mal. But this is how things started for me.

First I felt like something was different. I just felt like I wasnt all there... I knew something wasnt right. Then my heart would start to beat faster, my left hand and foot would start to feel like needles were attaching it. It would start in my hand and foot, and go up the rest of my body, attacking my face, I recall it feeling like a million needles were attacking the roof of my mouth! My stomach felt like I was sick... like I wanted to vomit. I would get this feeling of fear and sadness that would over come me and I would want to at times start to cry. I could feel my head wanting to turn to the right. If I tried to fight it, the feeling would get worse. then my body started to stiffin up and start to jerk. I recall my right leg jerking and my arms feeling like they were locked up and jerking. During all of this, I can hear people talking to me, asking me questions, and due to how strong the feelings are during the seizure, the only way i could respond back was try to shake my head or wait til the seizure was over. They lasted between 2-3 minutes each. Afterwords my head would be hurting and Id feel so tired and sore.

I was put back on Keppra XR and within time, my seizure stopped. But two things I have noticed since going from two seizure medications to only one, is that lack of sleep or stress can cause the seizures to come on anytime they feel like it. Where as before, It didnt bother me like that.

 

[gamerchick89]

The heart racing and feeling of impending sickness is very familiar to me. It's like knowing that something bad, very bad is coming. It's funny that you mention lack of sleep. I have a high functioning autistic 9 year old daughter (epilepsy free, btw) who has me worrying and lying awake at night because of her behavior at school and how she relates to other children in this neighborhood. Not sleeping much seems to add up in a big way very quickly!

BTW, I've tried to fight it too, but it's like there's a disconnect between body and mind. Like you're unable to get the controls to do what you demand.

It sounds like you are very well controlled with your meds. I'm thinking that when I go back to seeing a neurologist I'm going to request Tegretol. It seems to be the one thing that didn't give me too much trouble. They took me off of that when I was pregnant.

 

[epileric]

BTW, I've tried to fight it too, but it's like there's a disconnect between body and mind. Like you're unable to get the controls to do what you demand.

I used to have seizures where I would remember my head being pulled to the right (I still have them but don't really remember it anymore). It was a reflex to fight the force pulling my head but I eventually figured out that the more I fought it the more momentum I gave the seizure and if I were to try & breathe & let my head be pulled the seizure was less severe & I'd be less tired or confused afterwards.

It was hard to do because fighting it was reflexive & it took a few seizures before I was able to do it, and I still didn't do it every time but they were less severe when I did.

 

[Little a]

I am so glad I came across your post! My 18 year old daughter started having seizures one year ago, so we are still trying to figure things out. Like you, she has had seizures where she retains consciousness. My heart is breaking for her because during them, she will struggle to say things like, "Hold me," or "What's wrong with me?" She also has the head turning episodes, and this is the first place I have heard of other people experiencing the same thing. So thank you!
First think you need to do is go back to the neurologist, and no more cold turkey!

 

[gamerchick89]

Hi Little a. Sorry your daughter has had to go through this. It can be disconcerting to feel out of control of your body like that, so I can understand why she would say those things. Sometimes there is a falling feeling, or even a 'spinning' feeling like the world will just not hold still. I'm glad we were able to let you know that she is not alone.

 

[momof3boys]

I am so glad I came across your post! My 18 year old daughter started having seizures one year ago, so we are still trying to figure things out. Like you, she has had seizures where she retains consciousness. My heart is breaking for her because during them, she will struggle to say things like, "Hold me," or "What's wrong with me?" She also has the head turning episodes, and this is the first place I have heard of other people experiencing the same thing. So thank you!
First think you need to do is go back to the neurologist, and no more cold turkey!

I will be seeing my dr in august. So we'll be talking them more about what he wants to do. Yes, I was very suprised they took me off all medications "cold turkey". I guess its the way they do it at that hospital if you're all hooked up, and ready to go, they said they had the stuff to help me if I went into status epileptic. Kind of scary though.

 

[Believer]

mentally aware during seizures

Hi,
I'm a 44 years old and have had epilepsy since the age of 3, I was then diagnosed with grandmal seizures but I presently have complex partial seizures. They are seizures of when I'm asleep and I'm scratching my pillow that is considered as one, I have had seizure that I would be talking to someone but all of a sudden I'm in a daze until my name is called out several times. I haven't had any for about 6 months but that is what I have experienced. I have had surgery as well and the seizures after surgery have improved to less to no seizures. Hope you find some answers but if does continue it is probably a good idea to see your neurologist.