Hi sami,

your seizures sound really scary. I guess all seizures are.

Mine aren't so bad anymore for a number of reasons: (1) I take 3 meds. (2) I had surgery 5 years ago. (3) the hardest part: i'm learning how to limit myself. What I mean is... Instead of taking 5 classes at school (i'm a biomedical engineering student) plus working part-time and doing research, I take 4 classes and nothing else. I always feel like people are going to think i'm just lazy, but i've learned the hard way that I just can't handle that much. If I stress out too much or don't get enough sleep I pay the price.

Lately I just have simple partials triggered by light. I am extremely photosensitive--my seizures start in my left occipital lobe (so it's all visual stuff). I'm most sensitive to bright sunlight (especially if it's flickering through trees or a fence), flourescent lighting like in a grocery store, any type of flashing lights that are colorful or spinning, or even just a very colorful environment.

What happens is I see flickering white or multi-colored lights on the right side. On a bad day they can bother me on and off all day long. Sometimes though, they can be so subtle that I think i'm imagining it. They're extremely distracting--it's more difficult to read and hold thoughts, but I just try my best to ignore them. Since my surgery it's only gone further than that about 4 times.

In the past: the white flickering would quicky turn into a multi-colored spinning ball of flashing lights that would drift all the way to the right. It's hard to describe. (i made a drawing for my doctor though and the team used it during my pre-surgical evaluation.) the ball would stay for a few minutes, my eyes would pull all the way to the right and I couldn't pull them straight no matter how hard I tried. I would lose all vision--all I could see was that ball of lights. When I spoke, I couldn't find any words. I didn't know my name or what a shoe was. I thought I was making sense, but people told me I was just saying jibberish. I felt dizzy, confused, and disconnected. It helped if someone held my hand. After the ball 'turned off', my vision would start to come back from the left. I remained confused for about an hour after, and then I would get a pounding migraine. There was one time I had a grand mal that started the exact same way.

Sorry this is so long. I've never written this all out before!

Best wishes,
jen

Hello jen.

I hope you are well, this ball of light that you describe. Now I get a feeling similar. The only way that I can describe it is, sometimes when I write or when I am just doing nothing my eyes wander off to the left like they roll there. Then it feels like I am cross eyed.
I cant stop it at all. It feels like my eyes are shaking from side to side kinda. Then they roll back and flutter.
Thats when I see the lightening effect thats what I call it anyway. Its like a storm in my head. I cant speak at this time either. After I feel so strange. My head aches on one side. And this might happen alot throught the day. I feel like this most when I havent had much sleep.

That seems a little like mine but not exactly. My eyelids don't flutter, and mine starts with the lights. But I definitely relate to the sleep thing!!! Sleep is the #1 factor for me, stress is #2, and eating is probably #3.

I met a girl (many years ago) at an epilepsy group meeting that had seizures very similar to yours. Well, I think so. I don't know how hers felt, but she had a few while we were talking. She would stop talking mid-sentence, her eyes would roll back, and her eyelids would flutter. In a few seconds she would be fine and continue the conversation. I don't know if she got headaches. She was diagnosed with absence seizures (i think that's the same as petit mal).

Jen

Yes the stress factor or the anger and mood swings.

I get so hyperactive for no reason I often wonder if I have bipolar disorder
i never know when I am stressed only the doctor does when my blood preasure is up.My moods change when I get angry at the slightest thing but I have been like that my entire life. And I have been told that it isnt uncommon for women to have mood related problems with their epilepsy. I think that everyone would have a mood problem to a certain extent. I know that if I am so angry and raising my voice yelling and screaming with my partner. She will begin to laugh at me and I will be like why are you laughing at me and she will be like because you arent making any sense at all. All your words are mixed up like some other language and I dont have a clue. My mother tells me I need to settle down lol before I blow my head off.

The tired factor

if I stay up all night the next day I feel funny in my head,like I am going mad like I want to rip my hair out like I want to climb the walls like my eyes are outta my head and this is when I have weird vision and feel the sickest. I usually get nausiated aswell and then my sleep pattern goes outta control.

Eat healthy wholesome food

if I eat meat and veg and the right stuff I put on weight with my meds
if I eat like kfc and burgerking/hungry jacks I go longer without a fit?? And I dont put on weight.

How weird is that.

Hi,
when I was 7 I was diagnosed with petit mal. My eyes rapidly flutter, but only for a second or 2. Very rarely does it interupt me at all. I carry on with conversations, walking, singing, playing piano, teaching (i'm a teacher) etc. It's only if i'm on the phone late at night that I sometimes lose my train of thought, but I expect that's somewhat usuall for people in general. The fluttering doesn't interfere with my vision at all really because it's so brief. My doctor had concerns around this and driving, but i've told him that a sneeze is more of a distraction than a little eye flutter. My doctor has wanted to eliminate these flutterings completely. But I don't think that's ever going to happen. I've noticed over the years that some people who don't have epilepsy sometimes have rapid blinking. 2 of my family members do as do a few others I know. So, this isn't a huge concern to me.
However, as i've said in other posts, when I was 19 tonic seizures started. A grand-mal seizure is a tonic-clonic. For me i've only had the tonic stage, lasting 30 -45 seconds. I can feel it coming on hours ahead of time, being really foggy, unable to have coherant conversations, being really tired, cold and lots of eye flutters that do inhibit my vision some. When the seizure happens, I go unconcious. A recall a few times that I felt it start and tried to stop it but of course couldn't. My head goes to the right, and my body completely stiffens. I don't convulse or lose controll of my bladder or bowels, thankfully. I have bitten my cheek before because I clamp my jaw down so tight and I have had fingernail marks in my hands because I squeeze them so tight. I gasp for breath and I am always aware when i'm coming out of it because it feels like I can't breathe. My heart pounds so fast! It's only a few minutes though until my breathing is fine, if that. After it's all done, despite being so short, i'm exhausted and all I can do is sleep! This type of seizure happens for me once every 18 months or so, and usually comes in 2's. Last time there was only 1 though!! I think it was because I slept right away afterwards and didn't do anything else. Other times after recovering from a seizure I wouold get up a few hours later, try to talk on the phone, watch tv or whatever, and that would always send me into another because I hadn't allowed myself time to rest.

Wow! Sorry, I didn't realize how long this was!
Just a little more....
Triggers for me are lack of sleep, stress and food as well. So. Like others have said, if I try to keep these things in check and not have too much going on (which drives me crazy, because I don't like having to slow down!!) things usually work out.

Kathy

I have a lot of problems with depression that began about 7 years ago (around the same time my seizures really started to interfere with my life). At that time I couldn't go to school or work for more than a few weeks at a time. My doctor told me that under those circumstances it would be almost strange if I wasn't depressed. I went for therapy though (which helped a little) and tried an antidepressant (which didn't help). After my surgery things were better and I was happy, but now and then i'd go into brief periods of depression. And now again the last couple months have been very rough for me. I tried to do more than I could handle at school, had to drop classes, and became very very depressed. I'm very anxious all the time too. (of course it's hard not to be when you live in nyc and every night on the news they talk about another way the terrorists are planning to kill us this summer!!!)

anyway, i'll probably start getting help for that soon. My brother has bipolar disorder so there may be a genetic connection there, but I don't think i'm bipolar because i've never to my knowledge been manic. But then again, i've been on depakote and lamictal for years and they are both used to treat bipolar. Could I have had bipolar disorder all along but it's just under control? I'm so confused about my mood problems lately. They are completely controlling my life.

Kathy, I don't like having to slow down either!! It's so frustrating! Every so often I push it and this is what happens!

Be well,
jen

I know exactly what you are saying about pushing it.
My grand mother suffered from bipolar disorder and she was in and out of mental institutions, to my knowledge also her 2 sisters are also bipolar and one of them has epilepsy also. And her brother.
So I guess it runs in my family but it can skip generations. I dont know if I am bipolar.
I went to the doctors again today and the report from my neuro came back. The neuro says I am an anxious young woman, and that I am some what an odd puzzle to put together.
My doctors are still saying that I am temporal lobe epileptic.
All my life I can remember me being tense and worried.
But thats all from the abuse my mother gave to me as a young child.
Mental abuse.

Ok, so I know this isnt what you mean,
this happened a few days ago while I was at work, standing at the server rack - had a grand mal seizure and took a dive into some old computers lying next to the rack...Luckily I missed hitting them square on, but still managed to scratch myself up a bit...All because I didnt sleep well the night before. Needless to say, I have been sleeping a lot since then...Just kind of waiting for the "surreallness" to wear off.

By the way, has anyone else experienced enhanced senses after a seizure? Ever since this last one, I swear my sense of smell is a lot more sensitive...I can smell the oil on my neighbor's car now when im on the back porch...Its kinda freaky to be honest...

high bipolar rates seen in epilepsy population

denver�not only is depression common among individuals with epilepsy, but bipolar disorder also is present in approximately 10% of these patients, new research shows. Clinicians caring for people with epilepsy should therefore fully assess psychiatric functioning before developing a long-term treatment plan, according to investigators.

A glaxosmithkline-funded mail-in survey of americans indicated that 9.8% of individuals with epilepsy have been diagnosed with bipolar disorder. These results were presented at the 2002 annual meeting of the american academy of neurology.


"we did a retrospective study in 1993 that found something similar," commented ronald lesser, md, professor of neurology and neurosurgery, johns hopkins hospital, baltimore. "there have been other studies that haven�t found that, but there may be an increased prevalence of affective disorders in patients with epilepsy."

primary investigator david blum, md, a physician in clinical development at glaxosmithkline, and two of his colleagues mailed a survey to 127,000 u.S. Households. The survey included demographic questions, medical diagnosis items and the manic-depression questionnaire (mdq). The investigators received completed surveys from a total of 180,997 individuals. This included 2,282 individuals who indicated that they had been diagnosed with either epilepsy or a "seizure disorder." the respondents were very similar to those providing the 2000 u.S. Census data with regard to age, gender, location and household size. These census data were used as a control.


Individuals with epilepsy were similar demographically to those without epilepsy, with whites being by far the most common race among respondents. However, the number of individuals with epilepsy under the age of 18 was significantly larger than that of their counterparts in the general population. Moreover, people with epilepsy, asthma or diabetes were significantly more likely to have annual incomes under $20,000 and significantly less likely to have incomes over $85,000 than the general population. Those with both depression and epilepsy fared the worst at both ends of the income spectrum.


Overall, 29% of respondents with epilepsy reported having a diagnosis of depression, compared to 17% of respondents with diabetes, 16% of those with asthma and 7% of respondents without any of these disorders (p <0.00001 vs. Individuals with epilepsy). Furthermore, 9.8% of individuals with epilepsy had a diagnosis of bipolar disorder, compared to just 2.7% of individuals with asthma, 2.6% of individuals with diabetes and 1.2% of those without these illnesses (p <0.00001 vs. Individuals with epilepsy).


The prevalence of bipolar disorder among the survey respondents was measured with the mdq. The results revealed that people with epilepsy scored significantly higher on all 12 items of the mdq than did survey respondents with asthma or diabetes, and also higher than the general american population. Moreover, while respondents with depression scored higher on the mdq than those with epilepsy, people who had both of these conditions had higher mdq scores than any other group. In total, 8.1% of respondents with epilepsy reached the mdq diagnostic threshold for bipolar disorder.


"it is well known that depressive symptoms are common in people with epilepsy, but there had been no previous surveys of how common bipolar disorder is in this population," said Dr. Blum. "we found that manic/hypomanic symptomatology is more common in people with epilepsy than in any other group studied except those with a formal diagnosis of affective disorder."

dr. Blum and his colleagues are currently conducting a follow-up survey in order to expand on the current findings, including more precisely determining the prevalence of affective disorders and their impact on people with epilepsy.


�rosemary frei, msc

Hi! It is like my own rollercoaster. It tells me ahead of time when it will start. Sometimes as early as 8 hrs. The signs are lighthead, like if you are on a elevator at the time it stops. I get tremors all mornings and have this strange feeling that something is about to happen. Sometimes I tried to move my point of vision and I can't. I feel like something is moving inside my head. I close my eyes and see lights and my eyes try to follow them and I can't control them, I try to stop my arms and I can't, I try to control my breathing and I can't because my chest don't let me. It is like someone hit me in my stomach and I cant breathe and them when I awake I fell dizzy and tired. I sleep most of the rest of the day. When I finally awake my body aches. I fell pain in my chest, arms, all over my body. I get about 3 to 5 a month. Thats all what I remember from my last 7 years in this rollercoaster. I tend to forget things more easy now. I have to change clothes and take a long shower because I lose bowel control and my body is all bruised up. At the begining I felt so ashame of myself. Like if I was dirty and hide from everybody. I even try to kill myself but i'm ok now. I tried everything...Dylantin, carbatrol, etc. My episodes are still uncontrolled but I learn to cope with it. I know someday they will discover the cure....I know they will.........Soon!!!!