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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

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

Submitted by ssuuzzyy on Tue, 2007-01-09 - 16:51
Mom of 17 yr old boy diagnosed with JME in Nov 2005. Christina, Hope this helps. A few minutes before my son had his first (and luckily, only, seizure) he fell three times. He was in the shower and said that he was really tired and fell. A few days later, before his first eeg, for which he had to be sleep deprived, he again was tired and stood up from sitting on the floor and fell down. The neuro said that these were myoclonic jerks and sometimes they can be very mild twitching in the arms or legs or strong enough to knock you down, which is what happened to him and sounds similar to your symptoms. The Depakote ER has been working in terms of controlling his seizures and myoclonic jerks. I have also heard that people with JME can have absence seizures. I recommend seeing a good neurologist or eliptologist and being very proactive in seeking testing to get a proper diagnosis. After his sezure my son went through a battery of tests at a nationally recognized children's hospital and by a pediatric cardiologist and was told he had neurocardiogenic syncope (fainting syndrome exacerbated by low blood pressure) which caused the seizure. The next day his legs went out again and we were told to see a neuro but couldn't get an appointment for several weeks. We pursued this through our family doctor who got him the same day -- highly unusual. The experts are not always right -- pursue it until you are satisfied with your diagnosis and treatment. Good luck to you. Suzy

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

Submitted by dockeryz on Thu, 2007-03-29 - 13:54
I completely relate to this. Both descriptions. Although, I've never just fell on the ground, I have had that feeling of am I going to black out right now. My muscles will get all tense and eventually they will completely loose they're tension and give out making me faint for just a split second and then I catch myself. It happens in all different areas of my body. Like my vocal chords, my hands and fingers, my heartbeat, nearly anything. But, if I'm in the shower and I'm really tired I WILL faint and convulse. It will happen usually when I start to wash my hair and close my eyes. When I begin massaging my hair to lather the shampoo in, I get vertigo like crazy and it takes every bit of energy in my to keep from falling backwards. I used to think it was normal, it's happened a bunch of times throughout my teenage years and I just assumed I was tired, but when I realized that nobody else did it I was overwhelmed with paranoia. Absence seizures. I'm not too sure if I have them or not. I know that lately..a lot I find myself just starring blankly at the ceiling for no reason, but meanwhile I'm thinking deeply about something. I'm so deep in thought that I can move and then when I realize that I'm immobile I freak out and have to do something like clean. I find that playing the guitar helps me a lot. Anything to keep me from just starring blankly at the time. Unfortunately, for me I have no clue what form of epilepsy I have. I don't think my neuro knows anything. All he does when I show up for an appointment is ask me if I'm taking my meds still and if I've had any seizures, but when he says seizures I know he's talking about the grand mals. So I say no. But at least when I told him some of the symptoms I'm having now he sent me for a sleep study so I know I'll find something out. What do you guys think? Do I have JME? Do I have the fainting syndrome..or is it cataplexy? I'm confused.

Re: Re: JME with Partials??? Long explaination, but desperate fo

Submitted by dockeryz on Wed, 2007-04-04 - 15:30
anyone? Any thoughts, insight?

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