Aura's - So many questions!

[kashani19]

Hello Everyone! My 7 year old daughter has aura's. She has had them since December 2011. I didn't know what they were until she had a seizure in February 2012. I now know they are the prediction of a seizure. My daughter has them all the time without having a seizure. Anyone else out there like that? What do you feel? See? Smell? My daughter tells me she is "thinking crazy thoughts" She used to describe them in detail before the seizure that she would see puppets, but no one was controlling them. She now is on Toprimate 60mg a day and Keppra 3ml at night 1ml during the day. She still has aura's sometimes daily, sometimes once a week, but she can't describe them to me anymore. The aura's do scare her each time. I guess my question is, how many people here have aura's? How often do you have them? Do they bring on seizures each time? I am just really trying to understand them more!

 

[Nakamova]

With epilepsy, auras are actually considered a kind of seizure called a Simple Partial. They don't always progress into larger seizures, but when they do, they are referred to as auras. (I know it can be confusing).

Simple Partial Seizures can take a wide variety of forms, and can be different for different people. They are usually characterized by some kind of sensory disturbance -- it could be a phantom smell/taste/sound, or a feeling of deja vu or jamais vu, or inexplicable anxiety, fear, anger, sadness, happiness. It could be a perceptual disturbance -- flashing patterns in the visual field, warped perspective (Alice-in-Wonderland syndrome), an out of body sensation, illusions or hallucinations. It could be a disturbance with the autonomic nervous system -- increased heart rate, sweating, a sense of nausea.

If you can, try and get her to explain more about what she is experiencing. It can be helpful to keep track of how often the symptoms are occurring as well as what time of day they happen.

 

[Cint]

I have had SP, CP, and TC seizures over the years. As Nakamova said, the SP's are actually auras before a CP or TC seizure for me and I have almost always experienced them before these type of seizures. For me, they feel sort of like an out of body sensation, everything around me starts sounding louder. If it progresses into a CP, my world is in slow motion, I'm unaware of what others are saying when speaking to me and won't remember much when I come out of it in several moments. They say I look really spaced out and sometimes utter nonsensical things. But I don't always go into a full blown seizure, sometimes it is just an aura.

It all depends on what type and where in the brain they originate from. Hope you find some answers.

 

[qtowngirl]

Unfortunately Nak and Cint are right, auras are seizures. I know it's confusing. And some doctors will only refer to them as simple partials, others only call them auras, and some even call them 'spells' (that infuriates me).
Good idea to write every one down incl. time of day and what she was doing/mood she was in at the time.
I TOTALLY get the puppet description. S.P's of the psychic kind are almost impossible for those without E to understand, they sound so unreal, but they are real nonetheless. Mine have always been of a psychic nature (I don't twitch or hear/smell things), and they 100% of the time bring on deja-vu and fear and recurring scenes, that as another member perfectly described it... 'like a dvd playing in my head.'

Have a read: www.epilepsy.com/epilepsy/newsletter/apr11_auras

 

[Janus]

Good stuff. Thanks Naka and Cint; Mine are a strong out of body experience where I am totally aware of what people around me are doing/saying but i can not respond and i have nausea but it kind of feels good, but it is scary and i just still myself and think "this is happening now, i will just wait for it to pass." After I feel relaxed and i have a strange feeling that i have to deny that anything happened. My son sometimes asks Did you just have a seizure? because he knows the look in my eyes that are not just 'spaced out' but a weird stare i guess. I do not know why I have a need to deny that anything happened. After I am a little tired, spacey and deeply relaxed. It is intense.

 

[summerf]

I have these. With mine, I have a thought that I'm about to have a seizure (like, the words "I'm about to have a seizure" run through my head), I feel sinking feeling that something bad is going to happen, I start to have a bit of tunnel vision, and things seem to move in slow motion for a few seconds. So far, I've only had one of these that happened before a tonic-clonic seizure. I have the feeling (with no tonic-clonic seizure to follow) fairly often, though.

 

[MuayThaiFighter]

It's good that your daughter is openly stating how she feels. I hid how I was feeling at 16, which ended up getting me a misdiagnosis. I was afraid to describe such unusual feelings, which with simple partials. I get them a lot, very common in the morning. Also very common with my triggers. They started happening more intensely as I come off my medications.

Maybe they can change some things around, in regards to the medications. They are scary, and I hope they can diminish them.

 

[kashani19]

Thank you to everyone for all the information. It is so helpful because I always feel like once I think I have everything figured out with my little girl, it changes. Her doctor actually calls her aura's "spells". She was having so many that he had her stay in the hospital for monitoring. She stayed there for 2 days with an EEG hooked up to her the entire time. The test came back NORMAL. She had 3 aura's "spells" while she was being monitored, and they came back as no seizure activity in the brain. Yet she continually has them and she is continually scared. It absolutely breaks my heart to watch her go through this!

 

[stacey]

Hi

From reading the above posts you have definately gotten good advice!!

I have had times where I have written on here about my 5 year old son and I know what you mean it's so incredibly hard to see a loved one go through a seizure and not be able to stop it. Huge hugs to you!!

You are a very caring mum and there are times that you have to bring out your fighting spirit, you are strong and Your child will get strength from you and that you're fighting so hard for them. Hugs from one mum to another.

 

[kashani19]

Hi

From reading the above posts you have definately gotten good advice!!

I have had times where I have written on here about my 5 year old son and I know what you mean it's so incredibly hard to see a loved one go through a seizure and not be able to stop it. Huge hugs to you!!

You are a very caring mum and there are times that you have to bring out your fighting spirit, you are strong and Your child will get strength from you and that you're fighting so hard for them. Hugs from one mum to another.

Thank you so much for the kind words! Just trying to take it day by day!

 

[donnajane]

Thank you everyone for sharing your experiences. I can't wait for almost 21 month old to be able to talk more and let me know more of what is happening with him. His Nureo calls some of what he does a fog or even a seziure cloud. I am sure once his speech progresses we will get a lot better picture of what is actually happening.
Thanks again.
Donna

 

[claireg5765]

i have TLE and when i have a seizure since i only have simple partial seizures i have "aura" type seizures but it has never grown into anything more so you can deffinetly just have those auras and nothing else what type of epilepsy has she been with diagnosed with?
hope she is doing ok

 

[momofthree]

I had no idea that auras were simple partial seizures, my son's doctor has only referred to them as auras. Sometimes they are followed by convulsions and sometimes not. He has had so many that we have started emergency meds when they get out of control. His feelings are that he can't move his legs, usually just one side.
Good luck everyone.

 

[qtowngirl]

hi mom,
Yeah it's unfortunate, some docs say auras some say simple partials, I've never understood why it has two names. Messes a lot of people up. When your son has what you've always known as auras followed by convulsions that is a 'tonic clonic secondarily generalized,' which means a tonic clonic that began as a partial seizure (can begin with a simple and/or complex partial).

 

[kashani19]

i have TLE and when i have a seizure since i only have simple partial seizures i have "aura" type seizures but it has never grown into anything more so you can deffinetly just have those auras and nothing else what type of epilepsy has she been with diagnosed with?
hope she is doing ok

Thank you for the information. She has been diagnosed with Tonic Clonic. She has aura's and seizures. We have her on Keppra and Topamax and it has helped pretty good. She still has aura's but just not as much.

 

[qtowngirl]

She has aura's and seizures.

Just friendly fyi... an aura is a seizure. As I said above it's unfortunate that the medical world allows it to have two names. Though the aura, or 'warning,' can and does precede larger seizures, it is just that - a smaller seizure warning that a larger seizure may follow. Whether anything follows however in no way changes the fact that it was a seizure, a simple partial seizure. This really needs to be cleared up for people, so frustrating. I myself, sitting in the hospital at this moment, have had to in person and on paper correct a handful of nurses when they've asked if I have an aura before a seizure.