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JME with Partials??? Long explaination, but desperate for help

Wed, 12/27/2006 - 20:32
So in October I was diagnosed as having Juvenile Myoclonic Epilepsy. (If this sounds familiar it's because I've posted prior to this but in some random spot that I can no longer find). Anyways, hearing the word epilepsy was quite unexpected. I'm 20, and it seems to me that I'd have known about something like this sooner! The neurologist suggested that I've had the myoclonic jerks for quite some time, since puberty, but that I wasn't aware of the fact that those jerks were actually seizures. It wasn't until recent "Tonic Clonic" episodes occured, that I noticed something was amiss. Still, my reason for going to neuro in the first place was because I had been getting really dizzy and losing my balance, "zoning out", and having visual disturbances. According to my neuro NONE of these symptoms is related to the JME. Articles I've found state that JME patients often have absences seizures in addition to the myoclonic and tonic clonic episodes. My neuro doesn't feel that this is the case. Still, my EEG showed various seizure activities... I recognize the Myoclonic jerks. I also recognize that lack of sleep, stress, and a poor diet, can lead me into Tonic Clonic episodes. Here are my questions: (1) There are periods of time where seconds pass and I'm totally unaware of it. Watching TV, and then it's on commercial, or I notice the clock is a minute past what I just noticed it changing to. Could these be absence seizures? (2) MOST IMPORTANTLY, can anyone explain what I've begun to call my "episodes".It starts with a tired feeling, confusion, and it quickly goes into feeling paralyzed. I can't move, or even blink, but I can see and hear. My vision is sometimes blurry, or it'll feel as if one eye focuses further than the other. The last for a few seconds, up to fifteen or so, or at least I've been told. During them I'm confused, and although I can see, and hear I'm not totally conscious of what's going on around me. (Similiar episodes have occured while I"m walking, milder, I can continue to walk, but not straight.) There is a feeling throughout my body, almost like a small electric wave. If something like the computer mouse is in my hand when it starts, my hand stays in that position. If I'm standing and I have a big one, I lose my legs, and plop to the ground. Sometimes I fall ,soemtimes I just kind of sink to my knees or butt. What the heck are these? My neuro seems to dismiss them as seizures, but from what I've heard they sound like simple partials. Can JME patients have several seizure types? My EEG showed several paryoxamals in my left front temporal region, and what she described as spikes and waves indictive of generalized epilepsy. When I showed my results to my primary care, she downloaded some information on them, and said they also indicated some absence seizure. Oddest of all was the fact that the ENTIRE left half of my brain slowed down at one point, while the right side continued on. Some times after a major episode I feel numb or weak on my left side, once so badly that my husband was afraid I'd had a stroke. It fades within severa minutes. I just want to know more about simple/complex partials, and if this haze I feel and fall under is more than just something odd about me that can't be explined... -Christina

Comments

Hi Christina, Absence

Submitted by solis on Wed, 2006-12-27 - 21:42
Hi Christina, Absence seizures and complex partials can be very similar (in both cases awareness is affected), but absence seizures are extremely short. Let me see what I can find to help you out.. 1) (Overall) Seizure symptoms.. http://www.epilepsy.com/101/ep101_symptom.html ComplexPartials.. ( Remember, not everyone has auras prior, and auras are just simple partials which occur immediately before another seizure type) http://www.epilepsy.com/epilepsy/seizure_complexpartial.html Absence.. http://www.epilepsy.com/epilepsy/seizure_absence.html Your #2 reminds me of most of my simple partials. No memory is subtracted. I always knew exactly where I was and if anyone was around me. Yet, I'd also be acutely aware I was having a seizure as I'd lost my ability to hear and (to my knowledge) did not speak. Inwardly I'd be freaking as I knew I was seizing & had no idea of the length of time that was passing. Simple Partials.. http://www.epilepsy.com/epilepsy/seizure_simplepartial.html As somone who's had E for a long, long time ,and who's learned along the way, I'd suggest anyone with E searchg out an epileptologist (= a neurologist that specializes in & that focuses on epilepsy). Given the vast amount of seizure types (over 40) and the fact that regular neurologists must know about every problem re: the entire brain and spine, IMO, an epilepsy specialist is ofen needed. Sadly, I didn't know such a speciality even existed until after my GP had sent me to every neurologist at the hospital (with no control success),so then I was (finally) sent to an epileptologist. Fact: Soon after seeing the epileptologist, for the first time in my entire life I was completely controlled. Plus, the combination of meds that did the job, had been on the market for years, but no neurologist had put me on that combo. The epileptologist was amazed it had never been tried. Know I wish you the very best, ~sol

Re: Hi Christina, Absence

Submitted by Christina41586 on Fri, 2006-12-29 - 13:29
I'm definitely looking into an epileptologist, hopefully my insurance will cover one. I swear, the complex partials/auras fit me to a T. I've actually been told in the past that I had "auras" but no one really looked into it. It's been a ridiculous battle. I have symptoms, they make sense, but nobody but me connects the dots! My neuro seems to think that if I can remember even PARTS of the seizure that I'm not having an actual seizure, wich I don't believe. Just because I maintain my ability to hear during one doesn't mean that I'm not having one. My EEG did show that many of my seizures began in my Left Front Temporal lobe, before becoming generalized through out my brain. So complex/simple partials does make sense. The absence seizures were a given, since they showed up and go along with JME. I guess the real answer lies in finding an epileptologist. Thank you.

Re: JME with Partials??? Long explaination, but desperate for he

Submitted by ssuuzzyy on Tue, 2007-01-09 - 16:37
Mom of 17 yr old boy diagnosed with JME in Nov 2005.

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