Newbie

[Kyrie Eleison]

Found a link to the site and decided to register.

I don't know whether I'm technically classified as an epileptic; what I do know is that I'm a 40 year old lawyer who developed migraines about 4 years ago and suffered 3 grand mal's in the last 6 months, 2 of which were somewhat violent and rather long (or so I'm told)....both lasted about 6-9 mins. and I was unconcious for 45 mins. to a hour. Fortunately, all three times I happened to be with friends; unfortunately, I've both split my head open once and chipped a tooth. I haven't heard the phrase "tonic-clonic" yet, but I'm assuming that's what I'm dealing with here.

Get this....the worst one happened in a church committee meeting, the committee being composed of myself, a Ph.D. nurse, a clinical psychologist who specializes in TBI, and the CEO of a 24 county MH/MR facility, and two other folks who are Ph.Ds. I guess if you're going to have one, that's the kind of people you want to have with you when it goes down.

They've diagnosed it as "seizure disorder" which is sort of a catch-all term for those of us whose seizure onset begins in midlife. At least that's what my neuro called it.

I take Depakote ER (500 mgs) bid, Topamax tid. One seizure occurred while on Topamax...the Depakote was added after that. I've not had any since the addition of Depakote, but I know that I will...I just don't know when.

Here's a few questions I have: first, is this disorder a subcategory of of epilepsy?

Second, according to a friend of mine during one of the seizures I was not breathing and a gentleman who happened to be in the lobby (we were in the lobby of the Inn at the Ballpark in downtown Houston) ran over, knelt down, and said something and I immediately began to breath. My friend asked how he knew what to do and he remarked that he had a brother and a sister who are both epileptics.

Here's the question: has any of y'all ever heard of anything like this? Anyone have any idea what he could have said that caused me to start breathing? Given the panic of the circumstances my friend doesn't remember what the remark was, which is certainly understandable, but I've got to know.

Finally, for those of you who are parents, I'm the father of three of the greatest sons a man could ask for, ages 20 mths., 4 y/o, and 7 y/o. My greatest fear them having to watch dad suffer a grand mal. If there is anyone here who has to deal with such a situation, I'd appreciate you sharing how you dealt with the situation.

You know, where I grew up you kinda had to do whatever it took in order deal with very serious issues...issues of life and death...at a fairly young, impressionable age. I went to 13 funerals my senior year in high school, 9 of which were students in the school district who had all died of cancer (all were AML,CML, or non-Hodgkin's lymphoma) brought on by the presence of the EPA's number 1 carcinogenic refinery being 1/4 mile south of the campus, and the facilities that ranked third and fifth were a mere 2 and 5 miles south, respectively. There wasn't a whole lotta things out there that we didn't give the bird to b/c we were frightened or intimidated.

But this scares the ever-living hell out of me.

 

[skillefer]

Hi Kyrie! Welcome to the group. I also have grandmals. The best way to make not as scary for kids, is to have a sense of humor about them. Kids reactions tend to reflect the reactions of the people around them. So if you and your caregivers/spouse react calmly, and answer their questions in a non-scary way, then they will react in a similar way.

 

[Stacy]

Hi kyrie! Welcome!

yes... I have your circumstances. I have two boys (7years and 4 years). It was very embarassing to me when i found out I had been in the hospital, Bern was out of town, and I had several (6 I think) grand mal seizures and my boys were out in the middle of the street trying to get the neighbors. The solution we came up with was we had a nice long talk (I scared the hell out of the boys), and now they know what to do if I ever get into that situation again. The good news is, they are more comfortable with all of this.

As far as what to say, I remember during one seizure, my father handing me meds and saying, "Stacy, take this, it's a matter of life and death." it's very possible your friend said something simple like, "BREATHE!"

I saved a guys life once by yelling while I was doing CPR. I was SH&E Supervisor at a treatment, storage & disposal facility (of hazardous waste) and a guy went down while cleaning a 1 million gallon tank. His hole watch yelled for me as he pulled his buddy out of the tank. My EMT skills kicked in immediately and I never once doubted what to do. I yelled for the guy to call 911, I yelled at someone to bring Oxygen. I was very calm and in my "zone".

As I performed CPR on the guy, I yelled to the beat of what should have been his heart rate.... "Breathe you !@#$%^&*(). C'mon BREATHE you !@#$%^&*(). You're not getting out of this life that easily! BREATHE you son of a !@#$%^&" You get the idea. He lived. I had saved his life and felt great. Of course, when all the big wigs crowded into my office, they all asked at once, "whathappendhow'dyoudoit? Tellusallaboutit! I looked around, there were people from the corporate offices, from the head of the company, from other local plants... at least 15-20 total. I gave them the deer in the headlights look. "uhhh." I could not think of anything. It was very humorous now, I told them i had someone call 911 and someone get oxygen, but the details were blurry."

Basically, prepare yourself and your children for whatever may come. Don't be too overwhelming, just let them know what do if the need arises. Good luck.

 

[RobinN]

Hi Kyrie - I am a parent of a 16 yr old with classic tonic clonic seizures. She has been having them for the past 1.5 yrs.

Other members are kidding me about this now, but my migraines were put to rest when I began to take magnesium and COQ10. There is also a lot of research online about magnesium and seizures too. You might consider asking your doctor about this.

BTW Welcome!

http://www.coping-with-epilepsy.com/forums/f22/magnesium-2230/

 

[Bernard]

Hi KE, welcome to the forum. :hello:

"Lord, have mercy" - nice username.

I don't know whether I'm technically classified as an epileptic;

Don't get too hung up on labels. Epilepsy can be simply defined as 2 or more seizure episodes of unspecific/undetermined origin.

EEG testing can confirm if you are having ongoing epileptiform brain wave activity, but clear EEGs don't necessarily mean you are not having it. Fun, eh?

A good place to start your journey exploring epilepsy: epilepsy 101

... what I do know is that I'm a 40 year old lawyer who developed migraines about 4 years ago and suffered 3 grand mal's in the last 6 months, 2 of which were somewhat violent and rather long (or so I'm told)....both lasted about 6-9 mins.

Migraines are closely tied to seizures. There's a lot of good info posted in the forums on migraines too. Check out the oxygen therapy for migraines thread. It contains links to other discussions including one about the role of magnesium.

... unfortunately, I've both split my head open once and chipped a tooth.

I witnessed my wife fall face first into a door jamb at the onset of a TC once and shatter her two front teeth. She has also fallen and caught the crown of her head on a window sill (which split her scalp and caused tremendous blood loss on the bathroom floor. You aren't alone in these experiences.

Here's a few questions I have: first, is this disorder a subcategory of of epilepsy?

Usually there is extensive testing (VEEG is the one that provides the most comprehensive info for neuros IIRC) that helps identify where and how epileptiform discharges are occuring in your brain. From that, they make a diagnosis as to the type of epilepsy. Seizures can be brought on by other physiological (drug OD, reaction, blood sugar problem, blood oxygen problem, etc.) or (unconscious) psychological sources which are not considered epileptic. It takes some testing to understand if your seizures are epileptic or non-epileptic.

Second, according to a friend of mine during one of the seizures I was not breathing and a gentleman who happened to be in the lobby (we were in the lobby of the Inn at the Ballpark in downtown Houston) ran over, knelt down, and said something and I immediately began to breath.

First of all, howdy neighbor!

When I first met my wife, she would respond to my voice and touch while presumably unconscious or post-ictal. It would help her resume breathing following a TC and/or recover quicker. Now that we have been together for a long time, she does not respond to me the same way. :roflmao:

Stacy always stops breathing for 10-30 seconds following the convulsions in a TC seizure. After that, breathing will be shallow and deep sleep ensues.

At least you weren't incontinent (I presume because you didn't mention it). Nothing like pissing your pants at the ballpark! :bigsmile:

... Given the panic of the circumstances my friend doesn't remember what the remark was, which is certainly understandable, but I've got to know.

Based upon my experience with my wife, it is most likely just the fact that someone you know and trusted spoke to you. The words themselves likely are of no consequence. It's just the reassurance or awareness that reaches you.

If there is anyone here who has to deal with such a situation, I'd appreciate you sharing how you dealt with the situation.

We have two boys (7yo & 4yo too!). Both have witnessed mommy having seizures. It can be traumatizing at first, but its just a fact of life that needs to be explained like anything else. Our 7yo is really awesome about it now. He helps me out when needed and doesn't panic. Our 4yo hasn't actually witnessed one in over a year, so I don't think he really understands much about them.

But this scares the ever-living hell out of me.

Make yourself at home here. Hopefully we can help you past the fear/anxiety.

 

[keyna]

Hi, welcome, this is a good place to just talk and unload. I haven't been here very long but everyone has been great and made me feel at home.

I have grand mal seizures and migraines, and I now know that if I get a migraine I am going to have a seizure. It really helps if you learn what your "triggers" might be.....ie.headaches, lack of sleep, stress, those type of things. Just a suggestion.

I respond to my mom and son's voices as I'm coming out of o seizure, otherwise when I come out I tend to either be terrified or violent because I'm terrified.

As to your children everyone reacts differently, my son Austin(age 11), he's torn 2 ways. He wants to help me, but my seizures are really violent and he still gets really scared. He knows what to do in case of a seizure, it's important so that he doesn't feel completely helpless. But still he doesn't like to be alone with me, and he can usually tell before I can when I'm going to have a seizure. He is seeing a counselor at school, who has been good at letting him express his fear and anger over the fact that mommy is different than she used to be, and can't always do the same things she used to be able to do. So like I said every child is different, and just like adults it can take time to adjust. Alot of kids don't have anyone they can talk to if their parents have epilepsy. Don't get me wrong, I'm not trying to scare you about your kids, Austin is wonderful and I thought he was doing great, until one day I got a phone call from one of his teachers, who told me that he had broke down crying that day(2yrs after I got sick)about his mom and how worried he was, and how angry he was. I had so much going on with my illness and Austin never complained, I didn't relize.

Anyway people here can tell you I tend to babble, sorry
Welcome

 

[Nancy]

Could I ask if your neuro has given you the basic MRI ?
Of course, I think that sould be basic treatment .... necessary treatment.

 

[brain]

:hello: Kyrie

Welcome to CWE! I too suffer from
tonic-clonic (aka Grand Mal) once in
a blue moon; but I suffer more from
CP & ABS (Complex Partial & Absence)
than anything else. I had a tonic-clonic
on Jan 14th, last month which I'd rather
forget about - for my head is slowly
shrinking, but the knot is still there,
my knee has gotten better, but still
clicks but will improve gradually. I see
my Neuro on 26th, in a few weeks.


More and More Epileptologists and
Neurologists are using the terminology
Seizure Disorder than Epilepsy, because
"Epilepsy" seems to scare people.

I agree - it's scary as heck, it's even
worse when you don't even know
what happened!

But like what Bernard says - don't get
so caught up with labels; it's nice to
know what you have and it comes in
handy for medical purposes and for
your family members to know.

The important thing is - not to let it
rule over your life! You can take
control over it, and there are groups,
Epilepsy Foundation or Hospital
Organization or Local support groups
that will help you overcome - and
speaking with your Neurologist or
Epileptologist about it; he/she can
direct you to one. Or you can go to
Epilepsy Foundation
and find one yourself if there's one
available in your State.

Hope this helps!

 

[Birdbomb]

Just want to welcome you. There really isn't too much more I could add other than the more you know and understand about epilepsy, the less fearsome it becomes. It's our own ignorances that creates the fears.

My granddaughters. 7 & 4, (I have adopted them) have not seen me have seizures, but they do know what to do in any case.

 

[TexasTravel]

Welcome! I am quite new here also so we can both get used to it together!

Just curious, does your name have anything to do with Fates Warning?

 

[Kyrie Eleison]

No, my username has nothing to do with Fate's Warning. I graduated from seminary (Duke Divinity School) prior to going to law school; hence, the username.

Since I last posted I've had another TC....only this time I was driving. As a matter of fact, it was on Sat., Feb. 9th...the very next day after my initial post. From all accounts, the wife and I extraordinarily lucky to be alive; quite literally, she saved our lives. I remember talking to another lawyer friend of mine, and the last thing out of his mouth that I recall is "Well, that's nothing to sneeze at" (he and I had just put the finishing touches on a very nice settlement the week prior, and the wife and I were headed out to celebrate). Apparently, about 3-4 miles I was in full-blown TCs...rear-ended a truck and totalled my own truck. Dammit....

Predictably and understandably, I've now lost my D.L. for at least a year. And how I'm going to be able to carry on my law practice in rural Texas I don't know....it wasn't unusual for me to drive some 400-500 miles a week attending hearings, depositions, pretrial conferences, mediations, etc.

To the questions above....yes, I've had an MRI, CT scans (w/ and w/o contrast), EEG (twice), PET, etc. I wish it were organic, but it's not: nothing shows up (except the location of the TC's via the EEG...and I'm not too sold on the validty of that particular test).

Regarding what was said to me....maybe I wasn't clear, but it wasn't my friend who spoke to me; it was a perfect stranger who had a brother and sister with SD who said a single word during the TC that caused me to start breathing again. I'd kill to know what a perfect stranger could do for me merely with the spoken word.

And no, I've never been incontinent during any of my TCs. Thank God.

Just sux not having any idea why this is happening now...at age 40. It's not so much me as it is so grossly unfair to my wife and kids to have to rearrange their entire lives and expectations around a condition that none of us could have predicted in our wildest dreams.

Ahhh well....we've been through thicker than this. If I go down and this keeps up, at least I'll go down with my boots on. I'll damn sure fight it for every inch it wants. Y'all can bank on that.

 

[Birdbomb]

Life is what happens to you while you're busy making other plans.
John Lennon

Late onset is NOT fun but we adapt. Who knows? Maybe you will find the reason, but don't hold your breath on it, most cases of epilepsy have no origin.

The next step is to see if there is a pattern or trigger and that means keeping a detailed log of what you eat, sleep patterns, activities, ect. Have to become your own detective.

 

[tinasmom]

Epilepsy/Seizure Disorders does affect everyone in the family. First time seizures as an adult is becoming more common. I would suggest that you ask your doctor for an prescription for Diastat. This is administered after the seizure has gone on for 5 minutes or shorter, if that's what the doctor tells you.

I am so sorry that this is happening to you and your family.

 

[Bernard]

Since I last posted I've had another TC....only this time I was driving.... Dammit....

Sorry to hear that. I was wondering why you hadn't been back to continue this thread. Unfortunately, when members are absent for a while, it's usually bad news.

Glad you all survived the car accident! At least you didn't end up on the local news like this person.

... an MRI, CT scans (w/ and w/o contrast), EEG (twice), PET, etc. ... nothing shows up (except the location of the TC's via the EEG... And no, I've never been incontinent during any of my TCs.

Well, the fact that the EEGs captured epileptiform activity is an indication that your seizures are indeed epileptic. Otherwise (and especially because you are not incontinent), there would be a strong presumption that the seizures are non-epileptic (PNES).

Your docs will likely keep prescribing drugs for you (since there is a presumption of epileptic seizures). I'd recommend you look into EEG neurofeedback and start a seizure diary.

Just sux not having any idea why this is happening now...at age 40. It's not so much me as it is so grossly unfair to my wife and kids to have to rearrange their entire lives and expectations around a condition that none of us could have predicted in our wildest dreams.

You're not the first one to travel down this road. Spend a bit of time reading here in The Foyer and you should find this to be a fairly common refrain.

 

[brain]

I didn't loose my Driver's License,
I walked in and surrendered it on my
own. No Doctor told me to, I just knew
I had to and yet I had been driving since
I had my Learner's Permit ages ago; and
was in compliance with the State DMV
Med Board (now known as DHSMV) for
ages; after June 28, 2007 - the fleeing
Felon put an end to everything. That's
why I did what I did. It's that 'knowing
that you know that you know that you
know' it's over and then I told my
Primary and then the other Doctors.
They didn't balk at all, in fact, they were
relieved.

It's difficult enough for the State to get
or rather, removing People's driver's
licenses because of health reasons; but
on my end - I just walked in and did it.
Did it before the Doctors said anything.
Did it before the State requested any-
thing. (They can request tests to review
if the individual is safe enough to drive
or not and make the decision)

Do I miss driving? YES.
Do I regret what I did? NO.

 

[Birdbomb]

:agree:

I did the same thing for the same reasons.

 

[RobinN]

Sorry to hear about your seizure.

Ahhh well....we've been through thicker than this. If I go down and this keeps up, at least I'll go down with my boots on. I'll damn sure fight it for every inch it wants. Y'all can bank on that.
I

am fighting my daughters fight too with every thing I've got, though I don't have boots.

We are signing up for neurofeedback this week.

 

[skillefer]

Sorry to hear about your latest seizure. But I'm glad that you and your wife are ok. Keep fighting. And, as someone already noted, try keeping a journal. It will help you figure out your triggers. Write down what you go to bed, when you wake up, what you eat, and what you drink. Also, write down anything you were doing prior to each seizure. And try to find a way to minimize your stress. Stress tends to trigger seizures. My triggers are strobe lighting effects, stress, and low blood sugar. It's usually worse if I don't get enough sleep. So try to take care of yourself.

 

[Joe]

Also new here - welcome to CWE :hello:

Diagnosed early Jan following 2 car accidents - both of which I walked (limped) away from - battered and bruised but still 'kicking against the pricks' :|

I have abs, atyp abs, and sps; I am 36! Trying to make sense of it, and adapt accordingly - have just started (today, in fact) a journal - meds, supplements, food, drinks, snacks, what happens, what is odd/unusual, sleep patterns, stress, etc. etc. as recommended by many on this site. I am sure this will help (if nothing else, it at least means I am pro-active - I may not know why it has happened, but I will at least know how it happens!).onder:

Once again welcome, this is a reassuring place to be. :lol::e:

 

[BuckeyeFan]

Best of Luck to you!

There is a lot of good information and support at this site. Sometimes you need to do a little surfing to find what applies to you, but even the rest can be interesting.

My two months here have been quite helpful. Take time to enjoy Speber's music and CQ's jokes. They take the edge off.