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#1
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Can u have auras w/o having a seizure?I started having tonic clonic seizures 12 years ago, and since I've been on medication, I haven't had another tonic clonic seizure. I do however have frequent auras which are always the same as how my tonic clonic seizures started (facial tightness and/or twitching only right side, flashing lights, wierd sensation in stomach...always in that order too...), but since I've been on the meds, the auras haven't progressed to full tonic clonic seizures. About 5 minutes after the auras I usually get spasms/muslcle twiches and jerks in my arms & legs for 10-15 minutes, yet I'm fully awake during all this, and able to talk with people around me to tell them what's going on. More often than not, I'm embarrased so I throw people out of my office (if it happens at work) and close the door. Then as fast as it all started, it stops, and I feel like I was run over by a bus (i.e., tired, shakey, unstable, and very thirsty). Has anyone else ever experienced anything like this? I'm getting mixed msgs from the neurologists. Some have told me that I'm having lots of "mini" seizures every day, and others have said that basically I'm doing just fine (i'm not quite believing that...). Since the auras have increased, about 2.5 wks ago, current neurologist added Keppra to my zonegran, but the past few days i'm still having the facial tightness (yet none of my other aura symptons). Does this make sense to anyone, since it's got me pretty down and confused? Lastly, what type of seizures could these be, if they are in fact seizures? Thank you for reading. |
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#2
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| Yes, I have had many auras and no seizure at all, then one freakin' aura, then *boom* smacked with a seizure or seizures. Go figure! And no it's not a dumb question at all, it's a very good and valid question! |
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#3
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| My daughter had leg spasms and arm shaking, turning of the head to one side. We were told these were complex partial seizures. I have learned that even the stomach sensations that you have felt are also considered seizures.
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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#4
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| Yes I have auras without seizures so it can happen to anyone. auarus are simple partial seizures. Belinda |
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#5
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| I was also told that my auras were actually partial seizures |
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#6
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| Probably true, but I tend to look at aura's as that chance of preparation for the 'real' seizure. So, if I didn't have a follow-up to it, I'd call it good news - that's just my two-penny-worth |
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#7
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| I've been also informed that sometimes auras can be "seizures" by Epileptologists and Neurologists - but they've not been able to record any auras on an EEG, but it doesn't mean that it wasn't a seizure or seizures. However, the aura(s) I get are usually a warning that I'm going to have typically a Complex Partial which is the end result - unless, I get smacked with one major aura - I would end up with a Tonic Clonic. Maybe I should have defined myself a little more clearly. But I do have one question: Does anyone around here ever get a bunch of "mini" or "little" auras? Enough to drive you batty? |
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#8
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#9
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| Ummm....sounds like your auras are actually seizures. But, as to the question, can you have auras and not a seizure? Yes. Does your neurologist know about these spells your having and how frequently? If not, you may want to let them know....it could be that your med levels are too low. |
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#10
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| Hey Sharon, Yes! I do have clusters of auras or "status auras" as I call them, sometimes for hours at a time. I have been in and out of an aura for as long as eight hours. Sucks, big time; It makes functioning difficult, and it's a (w)itch trying to explain it to the doctor. My neurologist didn't really seem to understand (and I wondered if she really believed me), until I had an ambulatory EEG. She said my brain seized on-and-off all day long. ![]() Many times I would just rather have the dang seizure than fight all those auras....but sometimes they just don't let up. ![]() Hey everyone, Quick side note about auras: Technically, they are partial seizures. However, if you ask almost anyone with epilepsy who has auras, you generally get the response that they are warnings of an impending seizure and not the seizure itself. To this day, my neurologists don't understand how I differentiate an aura from a simple-partial seizure; Honestly, they never will understand. Only we, the patients, know what it feels like to be inside our body. In my opinion, my psychological/physical experience of the seizure far outweighs the importance of cramming the seizure into a particular catagory. Labeling misfirings and disrupted brain waves is a way for doctors to communicate with each other, it does little good to help them understand us. Sorry about the rant. Take care, Julie
__________________ "I WILL NEVER GIVE UP ON MY DREAMS; I WILL JUST MODIFY MY PATH FOR REACHING THEM" -j (me) "Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks |
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#11
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Hey Sharon, Yes! I do have clusters of auras or "status auras" as I call them, sometimes for hours at a time. I have been in and out of an aura for as long as eight hours. Sucks, big time; It makes functioning difficult, and it's a (w)itch trying to explain it to the doctor. My neurologist didn't really seem to understand (and I wondered if she really believed me), until I had an ambulatory EEG. She said my brain seized on-and-off all day long. ![]() Many times I would just rather have the dang seizure than fight all those auras....but sometimes they just don't let up. ![]() Hey everyone, Quick side note about auras: Technically, they are partial seizures. However, if you ask almost anyone with epilepsy who has auras, you generally get the response that they are warnings of an impending seizure and not the seizure itself. To this day, my neurologists don't understand how I differentiate an aura from a simple-partial seizure; Honestly, they never will understand. Only we, the patients, know what it feels like to be inside our body. In my opinion, my psychological/physical experience of the seizure far outweighs the importance of cramming the seizure into a particular catagory. Labeling misfirings and disrupted brain waves is a way for doctors to communicate with each other, it does little good to help them understand us. Sorry about the rant. Take care, Julie |
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#12
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Um, TT
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#13
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| Doesn't taste very good, but that's how I know if the 9v battery is still any good or not! |
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#14
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That might be what my 1st Epileptologist meant during one of the video EEG's I had when he said I was seizing every 5-7 seconds; when I was having those auras, but he didn't say the auras were seizures nor did he say what kind of seizures I had either. ![]() He just kind of left me "hanging out there" |
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#15
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| LOL .....I think Sharon has hit the nail on the head here....it's more of a tingling sensation with a slightly acidic taste to it. It's what we used to do to find out how much life a battery has left in it.So, now you can breath a huge sigh of relief, thinking I was gonna post something naughty !...honestly, what do you think I'm like ?!? |
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#16
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| Aura's are seizures so technically you can't have an aura without having a seizure, if you mean without having them generalize into a bigger seizure, yes thats possible. I can tell as to how the aura is as to whether or not its a warning sign of a bigger seizure My aura's have only ever generalized into tonic clonic after lasting a long time at much greater strength than normal (I have a few hours warning, though i can't say anything about my nocturnal seizures). However my worst awaken hallucinations occur when I've had several aura's in a day - they usually only last a second or two, but will occur frequently, until I have a hallucinatory one. That one is usually the last of the day - at least that I remember anyways. I suspect that without medicine the small clusters coming into a hallucination, would probably always be one long aura resulting in a tonic-clonic, but thats not something i'm willing to try to prove |
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#17
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Yes Kayak Yes auras = seizures. They are not just precursors or warning signs, they are actual seizures. Your tonic clonic seizures (grand mals) were probably 'secondarily generalized' which means they started from a more isolated seizure and then became a tonic clonic seizure. Your doctor controlled the tonic clonic seizures and it sounds like he is going after the auras with the Keppra. That is what my neurologist has done with pretty good success. Dilantin with the Keppra adjunct. I can't understand why some neurologists are still uninformed about auras. My doctor let me suffer through them for years and was happy that I only had the occasional T/C. After my last tonic clonic (5 years ago ), the ER doctor set me up with a very good neurologist and he flat out stated that our goal would be NO seizures at all. When I mentioned auras, he stated that they were seizures and he did not want me having any seizures.Though I still have problems, my auras are less frequent and less severe. None of them have progressed into a tonic clonic since starting Keppra. Please read some of the threads on Keppra so you know what to look out for. |
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#18
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| thanks buckeyefan (and everyone else who has responded) with all the info. This is now week 3 of Keppra for me, and my auras (tightness in only one side of face) were continuing on and off this week, but not progressing to my usual flashing lights and wierd stomach sensations. I'm concerned since I never know how far the auras are going to go, so I still called the neurologist yesterday, who increased my zonegran dose. This isn't making sense to me at all (not much seems to anymore), because the zonegran by itself wasn't controlling the auras and that's why the dr added the keppra. Does increasing the zonegran make sense to anyone else but me? -Anne |
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#19
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| So now I know I'm not the only one that gets that weird, almost metallic "taste" to me though its not quite a taste. As far as auras go, my epileptologist told me that mine are actually a form of simple partial seizure. I have times when I will see weird colors in my right eye or my muscles in my right side will start to spasm. |
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#20
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| First, This is not a dumb question. I have had many types of auras over the last 20+years, at first they did tell me they were just auras and now that these auras are partial seizures. I never know when the partial will go into a complex partial and when the complex partial will go into a grand mal. Ex. Just yesterday, while watching the morning news, the weather man starting making now sense I know what he was saying was not what I was hearing, then that awful taste in my mouth, then up the stairs to get my husband, I never know when such will go farther, he told me I was shaking, and mumbling different things that made no sense at all. I can remember some of what I thought I was saying however my husband told me it was all just mumbling with now sense at all. After this one seizure I felt totally exhausted like I had not slept at all through the night. Then about an hour later a mild partial hit me and then migrane and slept the rest of the day and all night. I haven't had a grandmal for two years, however when I get that awful taste in my mouth and hearing things I get very paranoid because when the grandmals hit me I always get these feelings before it hits. Last edited by stringbean; 10-22-2008 at 09:39 AM. |
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