Aura's

[kashani19]

Hello!
My 8 year old daughter was diagnosed with Grand Mal Tonic Clonic two years ago. She has not had a seizure since having 2 when she was diagnosed. She does have constant aura's or what we think are aura's. My Neuro calls them spells and does not believe that what she is feeling is an aura. He is ready to wean her off her meds. I am scared to death! He would like to have a EEG test done for 2 or 3 days, then he will decide if there is no seizure activity on the brain, then he will start the weaning process. I am scared because my daughter has aura's even on the meds. She currently takes 11ml of Keppra a day! So about 1 1/2 teaspoons.

I have 2 questions - can anyone tell me and help me understand what it feels like to wean off Keppra? And does anyone else have aura's or "feelings" even though they are on meds or off meds? Do you feel like they bring on seizures?
Thanks for your help! Just wanting to get answers before we move forward with this process. Hopefully it will ease my mind a bit!
Thanks!

 

[N Sperlo]

I have 2 questions - can anyone tell me and help me understand what it feels like to wean off Keppra? And does anyone else have aura's or "feelings" even though they are on meds or off meds? Do you feel like they bring on seizures?
Thanks for your help! Just wanting to get answers before we move forward with this process. Hopefully it will ease my mind a bit!
Thanks!

Hi kashani,
I was on 1000mg of Keppra and took myself off cold. I couldn't even tell a difference, but that was me. It will be different for everybody. I should not have taken myself off. I'm on 2000mg now.

As soon as my neurologist found out I was having problems with simple-partial seizures (auras, and yes I was on 2000mg Keppra and 100mg Vimpat) he put me on more Vimpat. When the doctor doesn't "believe" the simple-partial is happening, something is wrong. If she is having "spells" there may be more questioning. Simple-partials don't always show up on an EEG. I know that from experience.

Maybe time for a second opinion? That doctor works for YOU to ensure the health of your daughter.

Good luck and welcome.

 

[CathyAnn31]

No advice about weaning off meds as I've not had to go through it but just wanted to say hello from Richardson. I wish your daughter the best of luck.

 

[cadsgj]

Weaning off the drugs in general for me does not work well, especially the ones I have been taking for a period of time. But, as N Sperlo mentioned, it will be different for each of us.

Aura, hmmm... that is more a maybe field for me than a certainty. Reason being just what actually is an aura? Go to one place (or dictionary) to get an actual meaning of aura, then going to another place (or dictionary) to get the meaning and it changes as to just what it is, then define just what the start of a seizure actually is. Did I get an aura just before my seizure started or was it merely the start of a seizure. I get both complex partial and simple partial seizures, so for me, is what I suspect a possible aura actually the starting of my seizures? If I do get auras, it would be the light headedness (kinda like dizziness, though not dizzy) and the thought process not working so well which is what almost always happens prior to my partial seizures... I do get grand mal seizures, though not near as much as the partials and I really don't remember the before time after the fact, only the seizure starting as I slowly loose my vision, then wake up later very light headed.

Don't think I was much help there with the aura for you, but I shared it just in case. I do hope you get answers here that will help you best!

 

[Kgartner]

cadsgj - Those sound just like what my daughter is experiencing that I think might be simple partials! I mean exactly - light headedness and dizziness that isn't exactly dizziness (she also has used the words "weak" and "disoriented" and "feeling weird")! She had three t-cs in September that earned her the epilepsy diagnosis, but does not remember anything about the incidents so I feel like I have no idea if her dizzy episodes are seizure activity or something else. From my research it seems that the dizzy feeling is not a very common aura, but this not something that she described much at all before the seizures in September, and now they are happening several times a week.

None of these episdoes have obviously moved from the odd "feeling" into a complex partial - except perhaps once when I found her kneeling on the floor in front of her chair, but I did not witness the episode until it was over, and she was conscious (although somewhat muddled) when I found her. Do yours ever stop at the dizzy/lightheaded feeling without progressing? If so, how long do they last, and how do you feel afterwards? Most of Annika's last only 5-10 seconds, although she has had them that last longer. And generally she is OK after the short ones, although after the one where I found her on the floor she was pretty confused and unfocused for a couple of hours.

Finally (last question I promise!) yesterday evening she had a "panic attack" at dance, and I am really wondering about it. She had not been feeling well all day, and says she started to feel dizzy at dance class. She was about to speak to her teacher about it and ask to sit down, when she suddenly felt panicked and short of breath and had a full out panic attack. Again, I was not there to observe, but when I picked her up she was very upset and she was anxious all evening. She does deal with anxiety issues, and has had one other "panic attack" (although that was in a more stressful situation) - so it is certainly possible this was an anxiety reaction. However, some aspects of it sound more like a seizure, in particular the suddenness of the experience of panic, and the way it followed from the dizzy feelings. I do have a call into her neuro. Have you ever experienced anything like that?

Sorry to hijack the thread a bit, but I have not read anyone describe their "auras" in a way that sounds so much like what I am observing with my daughter. I did mention some of these incidents to her neuro, and he agrees that they are troubling but they are also inconclusive. I would appreciate any thoughts! Thank you!

 

[kashani19]

Kgartner

Please highjack any time. After reading your post,my daughter has stated that recently she is feeling differently with her aura's. That she just feels weird. And I wonder if it is dizziness? She also gets a LOT of headaches daily. I know they are from the aura's but my neuro thinks they are just headaches! I am so confused, puzzled, questioning everything all the time. I am so confused with the aura's. And my sweet 8 year old does what she can to describe them, but I just stay so confused all the time. ANY talk about aura's are greatly appreciated and wanted on ANY of my posts!

Thank you for your information!

 

[cadsgj]

Kgartner, Wow! You added experiences I live with - "she also has used the words "weak" and "disoriented" and "feeling weird" - part of my life. For me, these episodes are quite often heading to a seizure... usually simple partials though. Usually the complex partials I just feel light headed which gets worse, worse, worse, and then I take my little step into what I feel is a world next to reality where I can see things but understand nothing, my step out of the real world.

Many times I do get these feelings prior to what I feel is a seizure coming, but often the seizure does not make it - THANK GOODNESS! Usually these feelings coming that never make it to the seizure will last maybe a minute or two (hard to tell for sure as the mind isn't 100%) but they go away and most often will come back again - sometimes again and again, like teasing me of a potential seizure - some people believe they are actual seizures, so it is hard for me to say. It will be interesting when I get my upcoming EEG which I believe I have not had in 10+ years.

When you were talking about the panic attack, what popped into my mind as I read it was to me it seemed like she was actually having a seizure. Then you mentioned, "However, some aspects of it sound more like a seizure, in particular the suddenness of the experience of panic, and the way it followed from the dizzy feelings." And as I read that the first thing that popped into my mind is that of my seizures, they are not always the same when I get them. i do not know if it is what I recently ate, how much sleep I got night before, or many other things thru my days, but, I do know that it sure seemed like seizure to me as many of my seizures often change to some extent in the way I actually get them - same kind seizure, just different in how it comes about. My neurologist told me I don't have different seizures, just feeling them not always the same based on the reason I mentioned: food, sleep, etc.

I really wish I could learn what an aura actually is and what the true difference is between an aura, a simple partial, a complex partial... for me, i only know that they come from the same part of my brain. With your daughter and what you mentioned, it seems so similar.

And yes Kgartner, please do "highjack any time." The more I read here in this field, I really think I can feel and understand a bit better!

 

[Kgartner]

Thanks to both of you for your replies! They were very, very helpful. My daughter really hates to talk about any of these episodes, and it is very hard to figure out what is going on with her. She is definitely not convinced that they are a result of seizure activity, but we are very new to this and still figuring it out!

From what I understand, an "aura" is a simple partial seizure (i.e. activity often will show up on an EEG), but it is very, very localized to a small area of the brain. Cadsgj, perhaps when you experience it moving to what you consider a "simple partial" it is just affecting a greater area in the brain. I would be very curious to know what your experiences and symptoms are at that point, and how they differ from the "aura." And I would be very curious to know the results of your EEG!

Thanks again.

 

[Cint]

From what I understand, an "aura" is a simple partial seizure (i.e. activity often will show up on an EEG), but it is very, very localized to a small area of the brain.

This is what I understand an "aura" as also, a simple partial seizure. I usually have 'auras' before I go into a complex partial and definitely before a TC seizure. I feel like the world is starting to go in slow motion during the 'aura' and sometimes I do feel panicky and want to run. If I am with family or friends, they have said I've stopped mid-sentence when I have an 'aura' and they know a seizure is about to happen. Other's voices also start sounding sooooo loud to the point I can't stand it...... them I'm out.
And sometimes I do only have an "aura" or a simple partial seizure.

Check out this website for explaining auras:
http://www.epilepsy.com/epilepsy/auras

 

[MAB]

Thanks to both of you for your replies! They were very, very helpful. My daughter really hates to talk about any of these episodes, and it is very hard to figure out what is going on with her. She is definitely not convinced that they are a result of seizure activity, but we are very new to this and still figuring it out!

From what I understand, an "aura" is a simple partial seizure (i.e. activity often will show up on an EEG), but it is very, very localized to a small area of the brain. Cadsgj, perhaps when you experience it moving to what you consider a "simple partial" it is just affecting a greater area in the brain. I would be very curious to know what your experiences and symptoms are at that point, and how they differ from the "aura." And I would be very curious to know the results of your EEG!

Thanks again.

I had a short EEG 3.5 years ago that showed nothing. My neuro doctor treated them as TIA's from a stroke I had just had.

I just kind of assumed I had mental problems. Finally I decided to tell my family doctor about the phantom odors that were bothering me all the time for the last 3.5 years. She suggested I go back to my neuro doctor but I told her I didn't like him. She referred me to another neuro doctor that actually listened to me and told me she thinks I am having partial seizures. This was only 2 weeks ago. It's been an emotional time but at least I no longer that it's all mental.

My auras are olfactory and sensory. I smell phantom odors, having strange tastes and my left arm and leg will feel weak. During this time and for a period of time after, I will feel extremely exhausted. As far as I know I have never had anything other than a partial seizure. The family doctor and new neuro doctor believe the seizures are caused by the stroke since I think all the symptoms started after that.


As you said, a partial seizure affects a very, very localized small area of the brain. My stroke was the same way, just a very small, localized area.

 

[MAB]

Weird, when I shorten "neuro" doctor it automatically changes it to neurologist doctor.

 

[N Sperlo]

Kashani,

Anxiety attacks can be brought on by many things. That doesn't sound directly effected by the seizures. It may be, but more than likely it is the stress from dealing with situations that may scare her or some completely unrelated stress. Panic attacks should be brought up to a professional.

MAB,
I can type neurologist just fine.

 

[Kgartner]

Kashani,

Anxiety attacks can be brought on by many things. That doesn't sound directly effected by the seizures. It may be, but more than likely it is the stress from dealing with situations that may scare her or some completely unrelated stress. Panic attacks should be brought up to a professional.

I think this was directed to me rather than the OP! Thanks for your input. My daughter has dealt with anxiety issues before, so I'm not certain this is directly related to epilepsy - but I do think the stress of the new diagnosis (she was first diagnosed in early September) is definitely adding to the mix. I did speak with her neuro this afternoon, and went over what happened during her "panic attack." His concern was less that this was seizure activity, and more that the Keppra may be exacerbating or amplifying any underlying anxiety/depression issues. It basically seems to be working for her so I am not looking to make a change - but if these things keep happening it may be worth exploring.

 

[N Sperlo]

Kgartner! OOPS!

Check out Kepprage. Those of us on Keppra have it.

I'm a very stoic person. I don't show emotions normally. Even the rage can get to me. I shake, turn red, etc. We try to find good ways to let the anger out.

Maybe your daughter released some "rage energy" via way of a "panic attack".

Food for thought... I need real food ....

 

[mejohn1]

Hi Kashani. It sounds like she is having aura's to me. Tho no doctor, we all have varying experiences and seizure types and I've noticed from reading threads over time these are quite common. Mine are similar to what Cint said earlier in that the world slows down, almost feels like I'm experiencing things in 3rd person, which is really weird! I'll stay conscious but may not be able to respond to what's going on around me. I also have deja vu a lot. My auras have not always lead to partials, sometimes they've lasted all day with nothing more happening, other times I've had 10 seconds of aura then bam! What Keppra has done is reduced the number and duration of my partials, though I still have many days with auras. I'm on 3000mg daily and they just added lamictal 50mg daily to try to make it all stop. I havent had an aura or partial for two weeks now, but the lamictal ( I'm guessing) is causing major headaches and insomnia...which makes me think I'd rather have an aura and be able to sleep and not have my head exploding...

 

[kashani19]

I think I am going to get a second opinion! I am so terrified of taking my daughter off the medication because her current neurologist doesn't believe that her feelings are seizure related. I will say that she used to have aura's that tired her out all day long, and scared her. With the Keppra she seems more able to deal with them and they don't scare her as much. She also is not tired at all after having them. I have noticed that when we sit around all day, or she just wakes up in the morning, she will have more aura's than when we are active and moving around all day. Is that normal? Anyone else out there feel like your aura's are more frequent when you are sitting and calm, rather than moving around more?
Thanks!

 

[Nakamova]

Good for you -- it won't hurt to get a second opinion and it may very well help. It's important to feel more comfortable with and confident about the advice you receive from the neurologist. When you see the new doctor, be as detailed as possible with your descriptions of your daughter's symptoms. That will help the doc get a good sense of what's going on.

Seizures can be more common when the brain is producing the slower brainwaves associated with drowsiness or daydreaming. For this reason, many people have seizures when they are falling asleep, or just waking up, or are "not paying particular attention". This might explain the auar pattern in your daughter's case.