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I honest to god thought that my EEG would be completely normal and that the doctors were all loco for even thinking that I might have a seizure disorder or something.

I went into my psychiatrists office today and much to my surprise he handed me the name of a neurologist and number and told me to call him when I got home. He also went into explaining the report for the EEG, which completely baffled me. He said (I think) something about temporal lobe epilepsy, which to be honest didn't sound too bad, and went into something about generalized seizures and grand mals, apparently one is triggering the others. He also insisted on putting me on tegretol, a medication I've avoided like the plague over the last three years of being diagnosed Bp, although to be honest I don't know much about it just what others have told me. Is tegretol usually a first line medication for seizures?

Also I asked my doctor about driving, I drive clients in the company van frequently and I have this worry about crashing all of a sudden. I've never had an accident due to a seizure but there's always a first time, right? Do you guys drive? Does this worry even make sense? I have this worry that if work even gets a hint that I'll lose my job.

My doctor kept telling me that I should be grateful for this diagnosis, means all the crazy stuff that's been happening over the last two years has an explanation. I'm thinking, yeah great I'm not psychotic, people glowing and rooms turning color is just a normal thing, grief...

All my sister keeps asking is if this runs in families and if she, my brother and my nephew have to worry about getting this too. Do they? No one else in my family, that we know of, ever had seizures OR Bipolar, I keep asking if I was adopted or whether I just got all the bad genes ;)

Thank you all for your input and patience, I appreciate it.

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I honest to god thought that my EEG would be completely normal and that the doctors were all loco for even thinking that I might have a seizure disorder or something.

I went into my psychiatrists office today and much to my surprise he handed me the name of a neurologist and number and told me to call him when I got home. He also went into explaining the report for the EEG, which completely baffled me. He said (I think) something about temporal lobe epilepsy, which to be honest didn't sound too bad, and went into something about generalized seizures and grand mals, apparently one is triggering the others. He also insisted on putting me on tegretol, a medication I've avoided like the plague over the last three years of being diagnosed Bp, although to be honest I don't know much about it just what others have told me. Is tegretol usually a first line medication for seizures?

Also I asked my doctor about driving, I drive clients in the company van frequently and I have this worry about crashing all of a sudden. I've never had an accident due to a seizure but there's always a first time, right? Do you guys drive? Does this worry even make sense? I have this worry that if work even gets a hint that I'll lose my job.

My doctor kept telling me that I should be grateful for this diagnosis, means all the crazy stuff that's been happening over the last two years has an explanation. I'm thinking, yeah great I'm not psychotic, people glowing and rooms turning color is just a normal thing, grief...

All my sister keeps asking is if this runs in families and if she, my brother and my nephew have to worry about getting this too. Do they? No one else in my family, that we know of, ever had seizures OR Bipolar, I keep asking if I was adopted or whether I just got all the bad genes ;)

Thank you all for your input and patience, I appreciate it.

<{POST_SNAPBACK}>

Well, Tegretol is Ussually a first line med...I was on it for 15 years...I didnt find it as bad though, although I have juvenile myoclonic epilepsy, and Tegretol isnt exactly reccomended for that type of epilepsy, my doctor didnt exactly know what kind of epilepsy I had at the time. Further testing down the road, medical advancements, and other family members speaking out brought forth the correct diagnoses.

Speaking of family...Epilepsy has been shown to be genetic, but in certain types, like for instance, the type I have, JME, ussually shows up around puberty, is triggerred by the bodies horomonal changes, and sometimes something like staying up to late, or video games as well...but theres almost always others in the family with the same seizure disorder. If there arent a load of epileptics in your family, tell your brothers, sisters, cousins, and other kin not to worry.

  As far as driving goes...I personally have never driven. I got epilepsy as a minor, the day b4 my 15th birthday, right b4 drivers ED. I went ahead and took drivers ED...but in my state, if you cant go for 4 years without a seizure (and a doc saying so) then you cant drive...I have an insecurity and a fear about it anyway...Ive had doctors tell me when Im seizure free they'll sign for it...but Im still sure I'll be terrified. Its up to you and your doc really...you need to discuss this with him/her. Hope this helps.

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Hi there!

I was also put on Tegretol when first diagnosed about 10 years ago, Tegretol Retard that is. It worked wonders for the seizure part, but my brain got a bit foggier. My new neurologist told me that if I was diagnosed for the first time today I would have been put on Trileptal instead because its side effect profile is a bit nicer. It's more or less the same drug, so similar in fact that switching was done from one day to the other, both ways. I tried it for about a year, but switched back because I had a few seizures on Trileptal as opposed to none on Tegretol Retard, and anxiety became a big issue and I didn't feel "safe" on it.

Tegretol Retard has made me a few (try ten...) kilos heavier, made my brain a bit foggier and killed a lot of my creativity, but it keeps me seizure free, and that is what's most important to me.

Take care!

H.

Edited to say: I'm not sure about the rules on driving with a seizure disorder in the US, but here in Norway you have to stay seizure free for at least two years before you can get your license (back). Probably not a bad idea. An out-of-control car can do a lot of damage...

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Hello, I wasn't put on Tegretol not for seizures (as they weren't diagnosed yet) but for bipolar initially.  It didn't help with them.  Then came Lamictal but I never got up to a therapeutic dose as again it was just for bipolar and some craziness happened and we discontinued it (long story...involving sezure related incident but I think it was because of a med reaction that dropped my threshold...dumped the whole combo as I was cycling and going crazy anyhow.)

Finally I'm on Topamax and Frisium (aka Clobazam, a benzo) an adjunctive med and that's stopped everything nicely.

In Canada (Ontario at least), I think you need to be seizure free for at least 9 mos. before you can get your license back.  I'm still waiting...should be due in March, I think?

Karen

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Thank you all for your replies. The more I read on here from others stories the more questions I add to my list of things to ask the doctor when I finally see him.

Since I'm the only one in the family who has ever been diagnosed with a seizure disorder, I'm going to do what you mentioned and tell my sister that they should be fine, she could probably keep an eye on her son over the years but he should be good.

Anyone know if there's a link between seizures and migraines?

I'll definately be asking my doctor about the driving thing, I don't ever want to be responsible for hurting anyone else because of an incident when driving. Like I said though, it just worries me because if I find out I shouldn't be driving then I will lose my job because I wont be able to fulfill the terms of my employment. If I lose my job I lose my insurance and if memories serves me correctly, these medications are kind of expensive, aren't they?

My psychiatrist also said that alot of the symptoms we'd attributed to my bipolar disorder, could actually have come from seizures, which makes me wonder how in the world you seperate the two? I mean I know it's easy to seperate the big seizures, those that knock you to the floor and throw you into convulsions, but the smaller ones? Those that only outwardly change behavior or emotions? How do you guys know?

I told my psychiatrist that he'd better be talking to the neurologist because I have alot of questions for both of them now that the initial shock has worn off.

The only good news I've read so far is that it wont necessarily last, sometimes they do go away for good, right?

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Anyone know if there's a link between seizures and migraines?

Why yes, there is.  Or at least according to my neurologist.  In fact, that's his latest theory as to why I have mine.  Although I've always felt that they've simply been idiopathic in nature...well, who knows? I haven't been able to dig up any specific research but according to my doc and "one of his mentors"...yes, there can be a link.

And there also can not be a link.  Just so we're clear.  Just because you suffer from migraines and seizures doesn't mean that there is an automatic correlation.  I think the two can completely exist independent of each other.  In fact, the bulk of what I read said pretty much that!

Does that basically refute my neuro? Er...nevermind.  Not worth getting into.

Do you suffer from migraines? If so, definitely let your neuro in on this fact. 

I'll definately be asking my doctor about the driving thing, I don't ever want to be responsible for hurting anyone else because of an incident when driving. Like I said though, it just worries me because if I find out I shouldn't be driving then I will lose my job because I wont be able to fulfill the terms of my employment. If I lose my job I lose my insurance and if memories serves me correctly, these medications are kind of expensive, aren't they?

Maybe you can work something out because you need to be able to drive to support yourself.  I don't know about the laws in your area.

My psychiatrist also said that alot of the symptoms we'd attributed to my bipolar disorder, could actually have come from seizures, which makes me wonder how in the world you seperate the two? I mean I know it's easy to seperate the big seizures, those that knock you to the floor and throw you into convulsions, but the smaller ones? Those that only outwardly change behavior or emotions? How do you guys know?

It can be a tricky business.  But there are certain characteristics of seizures that could or would never be mistaken for bipolar activity.  Whether you were experiencing any of those as well as the mood change type/s behaviour would probably be key in any seizure disorder diagnosis.  This is of course just all based upon "appearances."  If you had an EEG that confirmed a diagnosis or TLE then that might be different.  Bear in mind, however, that even people with major TLE often have repeat EEGs with no epileptiform waves, spikes, discharges etc...

I told my psychiatrist that he'd better be talking to the neurologist because I have alot of questions for both of them now that the initial shock has worn off.

That's great.  The best thing you can do is be armed with information and ask lots of questions and learn as much as you can.  Good for you!

The only good news I've read so far is that it wont necessarily last, sometimes they do go away for good, right?

<{POST_SNAPBACK}>

Well, so far so good for me.

Karen

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My psychiatrist also said that alot of the symptoms we'd attributed to my bipolar disorder, could actually have come from seizures, which makes me wonder how in the world you seperate the two? I mean I know it's easy to seperate the big seizures, those that knock you to the floor and throw you into convulsions, but the smaller ones? Those that only outwardly change behavior or emotions? How do you guys know?

I told my psychiatrist that he'd better be talking to the neurologist because I have alot of questions for both of them now that the initial shock has worn off.

The only good news I've read so far is that it wont necessarily last, sometimes they do go away for good, right?

<{POST_SNAPBACK}>

Alot of times...my behavior changes prior to to... and dramatically after a seizure. Sometimes 2 or 3 days before I have a seizure, my moods shift...essp. before a breakthrough. My seizures ussually occur first thing in the morning or very late at night, and are do to stress...and my mood shifts CAN bring them on... or other triggers, like lack of sleep. I have myoclonics that turn into grand mals. I am not the same person for sometimes weeks after a big grand mal, and it takes me a while to get 'back on track'...I go through everything from panic attacks if I have a twictch in my finger ( thinking Im about to have a seizure, sounds silly, but I cant help it) to severe depression, to feeling elated that its all done with. Alot of this can resemble many different types of behavior problems...but it doesnt last long enough to be classified as anything other than postdictal trauma....at least thats what I call it.

I am, however, bipolar...alot of it, being diagnosed since I was a child, whether or not the 2 (epilepsy and bipolar) have effected eachother...is up to my doctor. My best, uneducated guess...is yes.

However, I must add, it is nice to knw that the medications I take to help control my seizures, are also helping to control my bipolar...

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This sort of talks a little bit about what Lisa describes.  Taken from http://www.e-epilepsy.org.uk/pages/article...ticle.cfm?id=69

Affective disorder

Pre-ictal depression

Prodromal moods of depression and irritability that occur hours or days before a seizure, and which may be relieved by the convulsion, are well known. Patients tend to report more depression on the days immediately preceding their seizures than on inter-ictal days. The length of the pre-ictal dysphoria can last from ten minutes to several days.

Ictal depression

Depressive moods can occur as part of an aura, rarely (about 1%), and are more common in with patients with temporal lobe epilepsy. Typically they are of sudden onset and can range in severity from mild sadness to profound helplessness or despair. No clear laterality effect has been noted.

Post-ictal depression

Post-ictal depression is not uncommon although its prevalence has never been estimated. It can last from hours to days and has features typical of a depressive syndrome. The density of the depression can be severe with some patients expressing suicidal thoughts. Suicide itself is not common unless associated with psychotic thinking (see below). Again, no laterality effect has consistently been reported. There are a group of patients in whom post-ictal depression continues into a prolonged depressive illness and is essentially an inter-ictal depression that requires antidepressant treatment.

In many settings, post-ictal depression accompanies the existential despair of patients who have intractable seizures, although biological components are clearly contributory, as are drug-related effects.

Anxiety disorders

Ictal fear and anxiety have been described and can be mistaken for panic disorder. Conversely, panic disorder is often misdiagnosed as an epileptic disorder, especially if there are non-specific temporal lobe epileptiform EEG abnormalities or there is a history of epilepsy. In general, ictal anxiety or fear is usually very stereotyped, with a rapid onset and of shorter duration than panic attacks. Patients with panic attacks often report symptoms such as staring blankly into space, or being out of touch with their environment, while patients with temporal lobe epilepsy often reveal evolution of the simple partial seizure into a complex partial seizure with some confusion and disturbance of consciousness and automatisms.

Post-ictal anxiety, like post-ictal depression, is not uncommon. Often it is biologically driven, as a feature of the temporal lobe syndrome, but it is also intertwined with fear of having further seizures, and the loss of confidence that goes with seizures in patients with intractable epilepsy. A self-reinforcing situation can occur in which a patient, on account of seizures, is fearful of leaving the house in case they have a seizure, they become anxious and hyperventilate, and this can increase the chances of having further seizures.

Karen

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If I lose my job I lose my insurance and if memories serves me correctly, these medications are kind of expensive, aren't they?

I certainly hope you don't lose your job or your insurance, but I wouldn't worry about not being able to pay for Tegretol if that were to happen.  The generic is dirt cheap, which is why my pdoc prescribed it for me (I don't have prescription coverage).

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Thank you karen, that was very informative and I appreciate you posting it, I have to come back and reread it when I'm not so tired.

<{POST_SNAPBACK}>

You're welcome and my pleasure.  I hope you are feeling better and more well rested soon.

Karen

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Well I met with my neurologist today for my initial appointment. Very nice doctor, very informative and patient, he actually listened to and heard my questions with a great deal of patience. He also ended up ordering an MRI, which they had right there. The whole office staff, and it was a big office, was really nice, I have to remember to thank my psychiatrist for recommending him.

He agreed that the three seizures I had in 2003 were definately grand mals (or whatever they are called now), but he thought it interesting that the EEG report showed frequent TLE seizures because all the seizures I've been getting since I was 13 seem to fall under the generalized category. This was why he wanted the MRI done, to make sure I didn't have a tumor or anything.

I fell sound asleep in the MRI, best nap I've had in awhile, guess it's true that some people can sleep through anything. Anyways, good news was no tumors or lesions or anything. Also no sign of temporal lobe epilepsy at that moment. Bad news is I show brain damage in the back right side of my brain.  It was really odd to see the MRI, where the brain should have formed smoothly against the skull, it was all shriveled in and the space was filled with spinal fluid. So the neurologist said he's going to investigate that further. The really odd thing about that though was I've never had a brain injury, and the kind of damage that MRI was showing was consistent with someone who had a significant brain injury as a baby or young child. I quizzed my parents and siblings but none of them could remember me being hurt either.  Just really odd, no injuries, no sickness, how else does that kind of brain damage happen?

He also gave me the bad news about driving. In this state I cannot ever drive as part of employment and as it stands right now I can't drive myself anywhere till I'm 6 months seizure free AND stable on medication for seizures. So right now I'm on meds (he decided on trileptal too) and I'm 2 months seizure free. I have to meet with the human resources person at work about my job, because driving the clients is a big part of the job description, but my neurologist (who knows some of the doctors I work with) told me if he finds out I've driven any of the clients from this point on, then he'll report me to the DMV and they'll pull my license, makes sense I guess. I really don't want to meet with the HR person, I don't want to lose my job.

You know epilepsy used to be that illness I heard about that others had...I never dreamed I'd end up with it, especially since it hadn't appeared in either side of my family tree for about three generations. ;)

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Interesting news GinMari.  That does sound kind of odd about the MRI.  Well, I hope they get to the bottom of it.  At least you got answers and that's always a positive thing.  I am sorry to hear about the job stuff.  I hope something can get worked out there as well.  Maybe some sort of transfer within the company?

Keep us posted,

Karen

Edited to add: Glad you got a good neuro too.  Sometimes they can be real jerks--just like all other forms of medical "professionals."  Heh.

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you fell asleep during an mri?!?!  how the fuck...those things are noisy as hell.

anyways.

glad you got put on some meds and that is an interesting mri.  i have seizures myself, or at least i suspect i do, i go to the neuro in jan.  i was diagnosed with grand mal when i was a kid, and was seizure free for about 10 years (so yes, they can disappear for a good while) but now i suspect they've started again, in my sleep.  i always did have them at night time when i was a kid.  but i'm on klonopin that's also an anti seizure medication so i'm not worried.  hope all goes well with you and your job and stuff. ^^

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  • 2 weeks later...

Yeah, that totally cracks me up! LOUD! I mean, I was relaxed and all cozy and stuff but no way could I sleep!

Karen

<{POST_SNAPBACK}>

;)   Guess if you're someone used to tuning out loud noises it's not too bad, combine that with not having gotten any sleep the night before and voila! Nap time!  Actually if I remember correctly they gave me ear plugs, so the noise wasn't too bad.

Work decided I fall under the ADA thing and that they can accomidate me not driving, so I get to keep my job however, my coworkers seem to hate me because I don't have to drive the clients anywhere and they do, very petty thing to hate me over consider I rarely drove as it was.

We've also realized that my generalized seizures have always come about in two situations 1) I'm extremely sleep deprieved or 2) I'm around a strobe light/fluorescent light or watching TV with the lights off for too long. I also just realized how hard it is to avoid fluorescent lighting! Wow, they're everywhere.

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  • 3 weeks later...

Hi Karen,

Sorry for the delay in responding, I've been working nonstop for the past two week, I am so grateful to finally have a day off!

Good news, my coworkers got over their tiff, I think watching three of our clients go into grandmal (tonic-clonic?) seizures had something to do with it. Not that I've gone into those more than a few times but they don't know that.

Bad news, I am have this weird seizures at night when I'm driving to work. I'd had them a few times in the past, but I am having them almost every night. My hands jerk to the point where I can't remove them from the wheel but neither can I control it. My eyes jerk around (honestly I didn't realize they could actually do that) so that I can't really see the road and almost think I've blacked out because I'll suddenly be unable to see, and my head jerks.  Luckily where I work is out in the country and I've so far been able to avoid hitting any trees, telephone poles, lightpoles or god forbid, any other cars or pedestrians walking.

I seem to be having similar responses if I'm on the computer too long, watching tv for any length of time or if I stay in the office at work too long.  It's got to be something with the lighting, I just don't understand why I'm getting so many of them NOW. I'm on trileptal, it should be helping these, shouldn't it?

I feel like things were so much better before I got diagnosed. I'd have a seizure or a "fainting spell" (doc tells me I wasn't fainting, I was having a seizure, I told him I didn't want to know that) every now and then, but now it seems like I can't control my mind or my body, my hands jerk and spasm the most which frustrates me, I can see them, I can see what they're doing but I can't control them, same with my eyes, I mean we should be able to control our eyes and yet I can't get them to look straight when they straight bouncing and jerking around, it's FRUSTRATING!

Sorry, I needed to vent a bit.  I think I liked it better when I could burying my head in the sand and ignore the problems.

Just out of curiousity, do you have any idea how ECT effects people with epilepsy?

Thanks

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Hey GinMari,

Glad to hear that work has improved but sorry to hear that the seizure stuff has gotten a bit more out of hand (so to speak...sorry, bad pun...unintentional, I swear...I have a habit of having them pop out of me all the time.)

The eye stuff could be something called nystygmus which is just sort of a general term for rapid eye movement back and forth but a lot of stuff that I've read stated that it was idiopathic (no known cause) and that it was more of an independent eye problem.

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