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trentonbest

Bad day?

Hello, I wanted to make this story because I'm scared, again.  I woke up at 8:29, and by almost 12:00, I have had 11 seizures.  Usually on a good day I have 15 seizures.  This seems like a lot in a short period of time, 3 hrs. and 30 minutes almost.  Can anybody provide advice and support?

Comments

Re: Bad day?

Just when I start to feel sorry for myself I read something like this and, baruch Hashem, I count my blessings.

I have been having a lot of seizures, too.  I can't count them because I only know I've had some of them because of how bad I feel afterwards.  The absence seizures I don't know about unless someone tells me or I become atonic and scrape myself up off the ground.

You need help.  You need a good Dr.  That is increasingly difficult to find.

Why are you alone having so many seizures?  This is extremely disturbing.  My situation is not too different from yours.  I understand the fear and despair as I am battling them too.

I found another good article.  I wonder if the spam trap will let it through:  http://www.patient.co.uk/doctor/Temporal-Lobe-Epilepsy.htm

Well I got the captcha gotcha, but I'll get past that after two or three tries.  My blog is a little strange, but you'll be able to identify with some of the posts.  Just skip what doesn't make sense.

I just realised you posted in the youth forum.  My blog is pretty grown up.  Maybe you shouldn't read it, but if you reply here, I will get back to you.

Please know that you are not alone.  There are lots of us out there who go through the same thing and there are lots of us out there who care.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Epilepsy Carpe Diem:  Images of Auras of Temporal Lobe Epilepsy

http://psychout.typepad.com/blog/2010/10/wikipedia_nys_law_enforcement_www_omh_state_ny_us_www_nj_humanservices_dmhs_us_gov_jfsatlantic_jewish_federation_atlantic_pol.html

Epilepsy Carpe Diem:  Images of New York State Police Cars and Google Searches

http://psychout.typepad.com/blog/2010/10/epilepsy-carpe-diem-images-of-auras-of-temporal-lobe-epilepsy.html

There's more to them than meets the eye.  I'm having trouble writing and putting stuff together so I have to do it this way.  Sometimes the shortest distance between two points isn't a two-dimensional line.

Re: Bad day?

I really do want to read it, if you don't mind.  Well, this was on a weekend.  Why is it so frightening.  The only time someone is there is when I am at school, which doesn't really count because no one knows what's happening in the first place, unless I tell them the story or if they have them.  Haha.  Why do you have trouble writing?

Re: Bad day?

Trent,

I would love to have you read the blog.  If you are in college, you are certainly old enough to read it.  Some of the stuff you will identify with, the internet tech geek search stuff you can skip if it bores you.  If you're a fellow geek, you'll like that stuff.

I have trouble writing because I've had too many left temporal lobe seizures.  That's the part of the brain that writes.  Mine is fried.

Weekends can be scary because there's not much in the way of support available unless you call 911.  That's something I avoid doing at all costs.  My hatred of hospital ERs may or may not be my undoing.  Based on the lack of or mis treatment I receive, for me staying away is safer than going, but it's different for everyone.

It's tough to have to keep explaining yourself.  Epilepsy scares people.  I'm not sure why.  It never scared me.  Maybe that's because deep down I've known what was wrong since I was a kid.

If you're having so many seizures you really need to see your neuro.  You shouldn't be having seizures every day, let alone more than ten in three hours.  I've been there.  I just got through a few really bad days.

I get email notifications so write any time you feel like it and I'll try to get back to you.  Take good care of yourself.

Baruch Hashem.  Hoshia na.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Re: Bad day?

This is normal for me to have this many seizures.  Not in this short period of time, but for me to have 30 a day.  Yes... every day.  I am going to an appointment today, so hopefully it works out.  I am a fellow geek, but I'm a freshman in High School.  If you don't mind, I still want to read it.  Thanks for the support.  I will keep you up to date if you want.  How many am I supposed to be having?  Right now, even my own brother says I am not getting my permit or anything, and it makes me sad sometimes.  I want to be able to do these things that all, or most, teenagers are obssessed over.  Hopefully I can get a few concerened other mental problems that I have cleared at my appointment.  Wish me luck.

Re: Bad day?

Trent,

Yes, please let me know how you are doing.  You are a strong person.  30 seizures a day is tough.  I've been there.  In fact, I've been in partial status for days.  It almost killed me.

I pray that all goes well with the doc.  The best possible outcome would be to get the right meds, get the seizures under control, and lead a normal life.  Then you can drive. 

You can still do a lot of the stuff teenagers obsess about without driving, but not being able to drive is tough.  JUST NO DRINKING, NO DRUGGING!  And if you really have to have sex, which is much better not to do until you are grown up, MAKE SURE YOU PROTECT YOURSELF!

I need a horse!  A good horse will get you home even if you're dead in the saddle.  (lol)

Your mental state should improve once you stop seizing non-stop.  The meds can have side effects so pay close attention to how you feel and don't let anyone tell you that you are crazy.  You sound like you have your head screwed on pretty tight.

You sound like a good kid.  If you are allowed to surf the net by yourself, then you don't need anyone's permission to read my blog.  Just remember that I'm 55 years old and I've had untreated epilepsy since I was a child so my life has not gone well.

Ten years ago I was earning $175,000 a year as an IT Consultant on Wall Street.  Now I'm so sick I can hardly take care of myself.  Make sure that you ask your doc questions and that he or she gives you answers with which you are comfortable.  Don't let anyone tell you how you feel.

Baruch Hashem.  Hoshia na.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

Re: Bad day?

Where's your blog at?  Okay, thanks.  Well, I made a new discussion.  It's the appointment confused one.  I hope you read it, and give adive.  Haha.  It's weird to me.

Re: Bad day?

This discussion has been interesting to read. I liked the suggestion to get a horse. I live in southwestern Ontario, in Mennonite territory. I've joked a few times that I just need to move out to the country, learn how to look after a few horses, and then drive horse and buggy :)

But since that's not going to happen (don't like being on things with their own brain), I get around myself either by bike, on foot, or by bus. (I am married to a driving husband, so he picks up the slack where it's needed.)

I've had lots of seizures in a day. Maybe because I've had them my entire life, they don't scare me. But I also trust them 100% to not change (and they never have except during pregnancy, when they improved).

I just read an article showing proof that frequent, non-injurious seizures, actually promotes brain healing. Not sure why I still have seizures then :) but here they are. One night recently, I was dead tired while attempting to have a conversation with my husband and had, I think, around 15 in 30 minutes. The solution? Go to bed.

My guess as to why you had so many is because your brain hadn't fully "woken up." I know it's been over a year since you've written, and maybe you've found a medication combination to control everything. But in case you haven't, sleep is a MAJOR factor in brain health and, therefore, seizure frequency.

Anyways, I really sure get back to work. Hope you've been able to find answers while on this journey.

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