30 minute Seizure Series - What it is?

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I need of bit of help figuring out what the heck is happening to me. I canâ€™t find any decisive information on the Internet. I canâ€™t get in to see a doctor. I would be grateful for any feedback, ideas, input, URLs, etc. to help me understand what I have. Hereâ€™s the scoop: I saw a Neuro in the ER about a month ago because Iâ€™d been having what he determined were partial seizures. They occurred about 3x a day. The EEG and MRI were normal. He put me on 1000mg of Keppra a day at first, but I called his nurse a couple of times to say the seizures were becoming worse (not more frequent, but more bizarre), and now Iâ€™m up to 3000mg a day. Theyâ€™re now less frequent (about 3x a week as opposed to 3x a day) but theyâ€™re doozies when they happen. I havenâ€™t seen or talked with the neuro since the ER â€“ Iâ€™ve had another EEG since, but I donâ€™t know the result. Iâ€™m sure it shows nothing, since I donâ€™t think I experienced a seizure during it. I have an appointment with the neuro on Friday, I have an appointment with the UVa Epilepsy Clinic in Charlottesville, VA in October, but meanwhile Iâ€™m in limbo, doubting my sanity. My greatest fear is that Iâ€™ll finally see the neuro and heâ€™ll determine that since nothing is showing up, itâ€™s all in my mind. Iâ€™ve been reading up on psychogenic seizures on the thought that itâ€™s what Iâ€™m experiencing. But I donâ€™t have any history of abuse, no traumatic experiences. I do have a loving husband who puts up with me, a beautiful grandson, nice stepkids, a great job, good friends, and fun hobbies. Iâ€™ve had depression since I was 12 (Iâ€™m 40ish now), but itâ€™s under control for the most part. (The Keppra does a number on me sometimes, though. Câ€™est la Keppra.) BUT Iâ€™ve read that psychogenic seizures last longer than epileptic seizures, and my episodes are relatively long. Almost every time I have a series of short episodes (seizures?) lasting a total of 20-30 minutes overall. It feels like the whole thing lasts about 5 minutes, but afterwards I look up at a clock and itâ€™s a lot more than that. (And I had one at work, and when I came out of it, my coworker commented with worry on how long it lasted.) Hereâ€™s what I know about the episodes: The series of events usually starts with a coppery taste on the left side of my tongue. Then the left side of my face starts to twitch, then the area around my left eye grows numb. Sometime during this progression Iâ€™ll get a sudden feeling of sometimes dÃ©jÃ vu, sometimes just a cool peaceful feeling. Then suddenly Iâ€™m confused and spacey. Usually then my left hand will start grasping for a few seconds, then it stops. Then after a little while more, it starts grasping again, then stops. Sometimes the short episodes will grow in intensity as the series progresses. And if it progresses, my right hand will grasp for a short will, then stop. And the series will culminate in what seems like a mini tonic-clonic, but Iâ€™m still semi-conscious and the t/c mainly affects my arms. Theyâ€™ll tense up, draw up to my chest, then hold for a short while. Then my hands start grasping then jerking and the jerking progresses up both arms from wrist to elbow to shoulder until the whole arm is jerking. It lasts just a little while, then Iâ€™m released. I donâ€™t think I lose consciousness; Iâ€™m just spacey and everything seems like a dream. And Iâ€™m not anxious- if I feel anything, itâ€™s a peaceful feeling and a detached interest in what my arms are doing. Usually after the arm t/c business, the whole thingâ€™s over. Afterwards usually Iâ€™m still spacey for a while, and I canâ€™t talk. I can think of words, but all that comes out if I try to say anything are raspy noises. Hereâ€™s another factor â€“ for 4-5 years Iâ€™ve been having what the doctors say are atypical migraines. Basically theyâ€™ve been hemiplegic migraines, where the left side of my face will grow numb, then my left arms feels weak. And I have *never ever* experienced a throbbing headache. Sometimes just a pinching-like line of pain behind my left eye. Not even enough to bother with ibuprofen. (And no history of head trauma that I know of, but I did have bacterial meningitis when I was 3.) So what gives with the relatively long episodes? Does anyone else have these things in a 20-30 minute series? Everything Iâ€™ve found referring to something that long either says psychogenic or status epilepticus. But complex partial SE as standard episodes? As I said, Iâ€™ll be grateful for any information/input/camaraderie, etc. Steph

Comments

Re: 30 minute Seizure Series - What it is?

Submitted by SunflowerPower on Sat, 2007-07-28 - 11:21

Well, steph, I've experienced long simple partial episodes as well, but the verdict isn't in yet on if they are psychogenic or not. Simple Partial status and complex partial status can and does happen though, and I would guess that it's a lot more prevalent than doctors think. I think the only way to know is to go in the hospital for a week long study and get it recorded on a vEEG. That will help, but you may never get a definitive answer. I'm in the same situation. It sucks. This is just about the only bit of info that I've ever found on the subject. Complex partial SE Complex partial SE is rare. Although many cases of prolonged complex partial SE have been described without long-term neurologic sequelae, negative outcomes can occur. No method to differentiate the cases associated with a poor outcome is known. In patients with isolated complex partial seizures, the origin is usually in the temporal lobe. In contrast, patients with complex partial SE usually have an extratemporal focus. Shorvon (1995) believes that at least 15% of patients with complex partial epilepsy have a history of nonconvulsive SE. Treatment is the same as that for convulsive SE. Simple partial SE By definition, simple partial SE consists of seizures localized to a discrete area of cerebral cortex, and it does not alter consciousness. Because this form is rare, no good studies have been done to determine its incidence. Diagnosis is primarily based on clinical findings. Because of the relatively small area of cerebral cortical involvement, results of conventional scalp EEG are frequently uncharacteristic of the clinical ictal activity, or they may be normal. Simple partial SE, in contrast to convulsive SE, is not associated high rates of morbidity or mortality. Outcomes seem to be related to the underlying etiology, the duration of the SE, the age of the patient, and the medical complications, as in convulsive SE. Treatment involves the same drugs and general pharmacologic principles as those used for convulsive SE. However, the relatively low morbidity and mortality rates suggest that aggressive treatment might not be needed. For example, if first-line drugs are ineffective, the clinician may elect not to use a general anesthetic agent to stop simple partial SE. http://www.emedicine.com/NEURO/topic417.htm

Well, steph, I've experienced long simple partial episodes as well, but the verdict isn't in yet on if they are psychogenic or not. Simple Partial status and complex partial status can and does happen though, and I would guess that it's a lot more prevalent than doctors think. I think the only way to know is to go in the hospital for a week long study and get it recorded on a vEEG. That will help, but you may never get a definitive answer. I'm in the same situation. It sucks. This is just about the only bit of info that I've ever found on the subject. <strong>Complex partial SE</strong> Complex partial SE is rare. Although many cases of prolonged complex partial SE have been described without long-term neurologic sequelae, negative outcomes can occur. No method to differentiate the cases associated with a poor outcome is known. In patients with isolated complex partial seizures, the origin is usually in the temporal lobe. In contrast, patients with complex partial SE usually have an extratemporal focus. Shorvon (1995) believes that at least 15% of patients with complex partial epilepsy have a history of nonconvulsive SE. Treatment is the same as that for convulsive SE. <strong>Simple partial SE</strong> By definition, simple partial SE consists of seizures localized to a discrete area of cerebral cortex, and it does not alter consciousness. Because this form is rare, no good studies have been done to determine its incidence. Diagnosis is primarily based on clinical findings. Because of the relatively small area of cerebral cortical involvement, results of conventional scalp EEG are frequently uncharacteristic of the clinical ictal activity, or they may be normal. Simple partial SE, in contrast to convulsive SE, is not associated high rates of morbidity or mortality. Outcomes seem to be related to the underlying etiology, the duration of the SE, the age of the patient, and the medical complications, as in convulsive SE. Treatment involves the same drugs and general pharmacologic principles as those used for convulsive SE. However, the relatively low morbidity and mortality rates suggest that aggressive treatment might not be needed. For example, if first-line drugs are ineffective, the clinician may elect not to use a general anesthetic agent to stop simple partial SE. <a>http://www.emedicine.com/NEURO/topic417.htm</a>

Well, steph, I've experienced long simple partial episodes as well, but the verdict isn't in yet on if they are psychogenic or not. Simple Partial status and complex partial status can and does happen though, and I would guess that it's a lot more prevalent than doctors think. I think the only way to know is to go in the hospital for a week long study and get it recorded on a vEEG. That will help, but you may never get a definitive answer. I'm in the same situation. It sucks. This is just about the only bit of info that I've ever found on the subject. Complex partial SE Complex partial SE is rare. Although many cases of prolonged complex partial SE have been described without long-term neurologic sequelae, negative outcomes can occur. No method to differentiate the cases associated with a poor outcome is known. In patients with isolated complex partial seizures, the origin is usually in the temporal lobe. In contrast, patients with complex partial SE usually have an extratemporal focus. Shorvon (1995) believes that at least 15% of patients with complex partial epilepsy have a history of nonconvulsive SE. Treatment is the same as that for convulsive SE. Simple partial SE By definition, simple partial SE consists of seizures localized to a discrete area of cerebral cortex, and it does not alter consciousness. Because this form is rare, no good studies have been done to determine its incidence. Diagnosis is primarily based on clinical findings. Because of the relatively small area of cerebral cortical involvement, results of conventional scalp EEG are frequently uncharacteristic of the clinical ictal activity, or they may be normal. Simple partial SE, in contrast to convulsive SE, is not associated high rates of morbidity or mortality. Outcomes seem to be related to the underlying etiology, the duration of the SE, the age of the patient, and the medical complications, as in convulsive SE. Treatment involves the same drugs and general pharmacologic principles as those used for convulsive SE. However, the relatively low morbidity and mortality rates suggest that aggressive treatment might not be needed. For example, if first-line drugs are ineffective, the clinician may elect not to use a general anesthetic agent to stop simple partial SE. http://www.emedicine.com/NEURO/topic417.htm

Re: Re: 30 minute Seizure Series - What it is?

Submitted by stephsobota on Sat, 2007-07-28 - 15:31

Hi Sunflower! Gees - I don't know whether to feel grateful that someone's in the same boat or sad that someone's in the same boat. Nevertheless I am sorry to hear that you're in the same rotten, leaking one-oared dinghy that I am. I've also ran across some things today about Frontal Lobe Epilepsy. Epilepsy.com says that "Sometimes a person remains fully aware during a frontal lobe seizure while having wild movements of the arms and legs. Because of their strange nature, frontal lobe seizures can be misdiagnosed as nonepileptic seizures." Emedicine also has interesting tidbits about it: http://www.emedicine.com/NEURO/topic141.htm What's most interesting is that 1.) they're apparently misdiagnosed as psychogenic and 2.)they come in clusters. And they don't always show up on EEG. Unfortunately, I'm not sure *exactly* what all this stuff indicates because I'm not a real doctor - I do have a doctorate degree in Russian literature, but that just means all I know about seizures is from reading Dostoevsky - who (and whose characters) apparently had temporal lobe tonic-clonics. Which does not help me or us. I'm hoping that the UVa center will order up a vEEG so maybe I can settle this once and for all. And I'm sort of hoping that they'll ask me to do things to provoke a seizure. Like staying up all night drinking tons of diet Mt. Dew, playing video games and watching war movies. (lack of sleep, caffeine and flashy things all set them off.) And if it somehow miraculously doesn't set off any seizures, at least I will have stayed up all night drinking diet Mt. Dew, playing video games and watching war movies. (Forgive my levity - I'm trying to keep a sense of humor about this.) All the best on your search and thanks for your feedback! Steph

Re: Re: Re: 30 minute Seizure Series - What it is?

Submitted by EarthMonkey on Sun, 2007-07-29 - 03:34

You were saying that you have one siezure then another ad the total is twenty to thirty minutes. You might be having cluster seizures where you have one after another and become consious between but not having much time between.