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How do you go about figuring out if you have a seizure disorder?


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I was diagnosed bipolar ii two years ago, but recently I've been displaying seizure-like episodes, and my boyfriend has been there when I've had three/four of them. I read the links on this forum, and so far the only thing that's made sense is this:http://emedicine.medscape.com/article/1184694-clinical. Like I asked my boyfriend, and though he was skeptical to the idea, he agreed that it sounded exactly like what was happening. So now that I think I know what might be wrong, how do i go about finding out if I'm right? Should I tell a therapist or a md doctor? Any advice as to how to deal with it before I get help?

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Details of the episodes often include characteristics that are inconsistent with epileptic seizures. In particular, some characteristics of the motor (ie, convulsive) phenomena are associated with PNES (see EEG video monitoring in Other Tests). Common and helpful symptoms include side-to-side shaking of the head, bilateral asynchronous movements (eg, bicycling), weeping, stuttering, and arching of the back. (See video below.) In a study of 120 seizures (36 PNES and 84 epileptic seizures) from 35 patients, only a few signs were reliable in predicting the diagnosis. PNES were predicted by preserved awareness, eye flutter, and episodes affected by bystanders (intensified or alleviated).

from this: http://emedicine.medscape.com/article/1184694-clinical, along with the triggers that they mention (becoming upset/angry/having just been in an argument). When I was researching what's been happening (fourth time I've had an episode was today) and I came across that link and description. It sounded like what's been happening to me, so a bit earlier I asked my boyfriend (who was witness to all but one of the episodes) to read the description and to tell me if it sounded like what's been happening. I expected him to say no (he's not much for psychological diagnosis), but he did say that yes, the symptoms sound like mine.

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this:

Details of the episodes often include characteristics that are inconsistent with epileptic seizures. In particular, some characteristics of the motor (ie, convulsive) phenomena are associated with PNES (see EEG video monitoring in Other Tests). Common and helpful symptoms include side-to-side shaking of the head, bilateral asynchronous movements (eg, bicycling), weeping, stuttering, and arching of the back. (See video below.) In a study of 120 seizures (36 PNES and 84 epileptic seizures) from 35 patients, only a few signs were reliable in predicting the diagnosis. PNES were predicted by preserved awareness, eye flutter, and episodes affected by bystanders (intensified or alleviated).

from this: http://emedicine.med...184694-clinical, along with the triggers that they mention (becoming upset/angry/having just been in an argument). When I was researching what's been happening (fourth time I've had an episode was today) and I came across that link and description. It sounded like what's been happening to me, so a bit earlier I asked my boyfriend (who was witness to all but one of the episodes) to read the description and to tell me if it sounded like what's been happening. I expected him to say no (he's not much for psychological diagnosis), but he did say that yes, the symptoms sound like mine.

Did u view the video example they had? That is what they are talking about. They don't really have any meds that can be used to treat this according to that link. They only have psychotherapeutic help.

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It's not always easy to tell PNES and epilepsy apart, even for experts (also, it's possible to have both).

I agree with jt07 and SashaSue - see a neurologist. My epilepsy went undiagnosed for years because my family assumed my seizures were entirely psychological/behavioral. Bad move.

You asked how to deal with your episodes - what type of episodes are you having? Do you fall? Have changed awareness/perception? or...? What worries you most?

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I don't fall, though I have always been laying down on a bed when they've happened. I am totally aware but I can't talk or do much of anything in response to other people, except for when I'm...crying out? for whatever it is to stop. Oh and I cry.

What worries me the most is that 1. this is completely new. This only started happening last week, and it's been right as school has started. 2. What it might do to my relationship with my boyfriend. So far, through everything, he has been impossibly understanding, but I don't know how it would be possible for him to stick around through this. 3. How completely not in control of me and my body and everything else I am in those moments. I can't stop shaking or twitching or hitting my head or yelling or crying or moaning and I hate it. I've always felt like the self-loathing, etc was like a monster in my head, but this is even worse. I feel like something is making me do these things and there's no way to stop it and I just. It makes me feel worse than anything else has.

And yes, I watched the video, and both myself and my boyfriend agreed that's what it looked/felt like.

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I didn't realise your episodes started so recently. You've had 4 in the last week, is that right? Understandable that you're worried (to say the least) - especially with school starting. Will you be living on campus?

It's hard to feel out of control. I have partial seizures rather than PNES (tho I might have both) - I'm aware or partially aware through them, but have strange feelings, can't talk (or say gobbledygook) and might do things I can't stop. Sometimes repeatedly. I've certainly said "make it stop" many times before.

Have you and your boyfriend been together for a while? If so, he obviously accepts your bipolar. Seizures can be scary, but they're just another illness. No guarantees of any relationship staying together, but one of my best friends stayed with her partner after he had a severe stroke; because of the stroke, he has many seizures every day (he's also now gone back to college to do his Masters).

It sounds like you would benefit from therapy regardless of what sort of seizures you are having. First port of call should be a neurologist, tho. Some sorts of epileptic seizures can mimic PNES. New-onset seizures really DO need proper investigation!

If it turns out you ARE having PNES, there's a good discussion forum here: http://www.neadtrust.co.uk. You might also want to check out the dissociation board here, as well as this one - PNES are somewhat related.

What have I forgotten to answer? :-)

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School has already started, actually. Classes started last Thursday (I think my first one was the day before that). Yes, that's right. I had one last week and then one almost every day this week. I have a dorm room, which I have to myself and use as a study room, but I spend the majority of my time (that isn't at class or work) at my boyfriend's apartment which is one block away from the school. I've only ever had them around Jonathan (my boyfriend), but I am really worried about having one with somebody else around. Last time I had one, I was by myself. I'm also a bit scared about what might happen if I'm not in bed.

Saturday is our two year anniversary actually. I know that he accepts it, I just can't help but worry that with this addition, it'll be so much harder for him.

Do you know if my insurance is under my parents, if they have to know if I make an appointment with a neurologist? I don't think I want them to know yet. They'll probably get really worried and/or disbelieving.

Thank you so, so much for all the questions you've answered! It's been so, so helpful.

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I'm Australian, so I'm not the person to ask about US insurance rules! Our health system here is more like Canada's or the UK's (tho not exactly the same as either).

Having seizures in front of other people: again, probably not the best person to give advice. I'm autistic and I've been having seizures since I was in grade school (a long time ago!). So my headspace about this stuff is pretty different. I remember seeing good discussion on the Epilepsy Foundation eCommunity tho (they even have a board specifically for college students, tho it's pretty quiet). A few people who post there have been diagnosed with PNES, and some don't have a definate diagnosis of anything yet. Others are like me - epilepsy that is difficult to control.

(I'm writing this on my mobile so don't have the link)

Having seizures when you're not on your bed - you're scared of badly injuring yourself? It's possible (and I know a couple of people who have); that said, in 30-odd years of seizures (sometimes many a day), I've had lots of bad bruises and a couple of mild concussions. That's it (OK, there were a couple of close calls too eg from a grand mal while swimming laps). If you are worried about safety, there is a website that goes thru risks and ways to reduce them - can give you the link when I'm not posting from a mobile. (Oh, and if your episodes *are* PNES - they're much less likely to cause serious injury than epileptic seizures are, according to the books).

Have I left anything out? (other than the all-important web addresses, and insurance info I don't know?)

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