Hello, new to this site!

[it's_a_bumpy_ride]

Hi, I'm new to this site and wanted to introduce myself. I am 36 year old mom of 2. I was diagnosed 11 years ago with a "seizure disorder" but once I was diagnosed I realized that I have been having seizures since I was a kid. I started remembering times of "de ja vu" that made me feel really weird and tired. I remember other things that now I know were absence seizures or simple partials. They didn't happen often and I never told anybody. Anyway, now I have had all kinds of seizures.

My kids are 14 and 9 during my pregnancy with my 9 year old son I started having up to 8 tonic clonic's a day. After he was born the seizures started to be worse around my menstrual cycle. I had a hysterectomy last year it has helped with the seizures but not totally.

My latest problem is with my 9 year old. He already suffers from an anxiety disorder, mostly from worrying about my seizures. A few weeks ago he had an "incident" he came downstairs and was pale, his eyes looked lost, he told us that the rooms upstairs looked backwards like they were in the wrong place. He said he felt funny in his belly, and scared like something bad was going to happen. Then he looked around and said the room was backwards. Then he fell asleep. This scared the heck out of me because what he said described my "auras" exactly. He has never heard me describe an aura...I just say I feel crooked in front of him. Anyway, we took him to the Dr. where we found out that he had crawled down the stairs and he didn't remember everything he said to us. He has had an EEG which was negative..(so are all of mine) tomorrow we have an appt at the ped neuro.

Wow that was a big intro. Sorry about that....once I start about my son I can't stop.

 

[RobinN]

Hi there - Sure glad you found us here.
I know how scary it is to see your son go through this. My daughter began having Tonic Clonic seizures about 2 yrs ago.

I am sure that my intro was much longer than yours. Never a need to worry that your posts are too long.

I do hope you share with us what your neurologist says. I also hope that he recommends an MRI and MRA to be on the safe side. Remember though, that just because these tests do not show anything conclusive, doesn't mean that it isn't happening. I do suggest nutritional changes to be your first, safest, healthiest, easiest lines of defense. There are some known allergies that cause seizures and can be turned around quite simply. There are also some vitamins and minerals that are known to support brain health. One being magnesium.

My daughter was immediately put on pharmaceuticals and I regret that now. Yet I did not know then, what I do know now. For Rebecca, the meds caused more seizures, and difficult (to put it mildly) side effects.

I hope you get some new information tomorrow that will enable you to be proactive.
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[skillefer]

Hi Bumpy! Yes it is a bumpy ride. Welcome to CWE. This is a great place to ask questions, and vent when needed. We're a friendly bunch, so feel free. Check out the library here. There's some excellent threads, like the epilepsy 101 thread. Also, you might want to start keeping a journal for both you and your son. Write down what you eat and drink, and how much. ....as well as how much sleep you get, and any stresses that either of you might be going through...Keeping a journal helps to find things that might act as triggers for our seizures. So make sure you write down any seizure activity you do have. Then, when it's time to go to the doc, make sure you take the journal with you. It will help you and the doc to see if there's any patterns or triggers. Of course, keeping a good sleep schedule and cutting back on stimulants like caffeine is always a good idea....so if you're a coffee fanatic, cutting back and switching to decaf might be a good idea. Also....remember that any changes you make should be made slowly....making changes too quickly can trigger seizure activity too.

As for your son....well, at least you know what to look for. Maybe if you both learn about it together, it will help him to not be so scared about it. I like to tell people to think about epilepsy like they do asthma or diabetes. You CAN live with it. I am one of many who have gone on and gotten advanced degrees, a drivers license, a career, and a wonderful group of family and friends. So don't think that epilepsy is the end.....it might force you to readjust how and what you do. But it's not the end of the world. So again, welcome....and you might want to encourage your son to maybe find a support group online too....We have several teens here. And sometimes a kid sees things in a different way than adults.

 

[Crazy Monkey]

Hiya Bumpy

Welcome to CWE, I have only been a member for a couple of months myself but this forum has become my second home and is full of great people.

I have had absence seizures since I was 10, I am now 30 and have found my own ways for me to co-exist with them, my parents were unsupportive and just left me to get on with it, when this happens you tend to learn things the hard way.

You are in a very good position to be able to help your son, as you are going through exactly the same thing, use the knowledge that you have gained from being epileptic and pass it on, he will learn from you.

As Skillefer said, being epileptic isn't all doom and gloom, I have a great job which funds my passion - travel photography, unlike Skilly I am restricted from driving, but I try not to let this stop me, where theres a will theres a way.

Take care

Kim

 

[brain]

:hello: Bumpy!

Welcome to CWE and indeed, Epilepsy takes
you for a very strange ride! Been there and
done that! We have lots of folks in CWE who
are in the same boat as you are as well as
Parents with "E" who have children with "E"
and Parents who don't have "E" but have
children with "E" and members who have "E"
and so on ...

One good place to start is browse around and
take a tour at EPILEPSY 101 and I can understand
completely about "Catamenial Epilepsy"
and you can visit here too:
Seizures during the menstrual cycle

Hope this gets you started!

 

[Bernard]

Hi bumpy ride, welcome to the forum. :hello:

Our kids have not exhibited any signs of having seizures, but we know it is always a possibility. My wife's family has a history of seizure disorders several generations back. There's just no way to tell if it's genetic, or environmental. This study gives me hope though.

 

[Elaine H]

Hi There

Welcome to CWE!! You have so found Sanctuary here! I know I have! Please please keep in touch and let us know how you are all doing? If there is anything you need to know, or an opinion or anything, fire it through to us folk here on CWE, Ive had Epilepsy since 1986, I've had brain surgery twice, I've studied epilepsy for 4 years with a University, and I am currently writing a book about my experiences, this site has been a real comfort, I can assure you, if there is something you want to know or share with someone, ask away here!

Keep in touch and let us all know how you are all doing?

Best Wishes

Elaine x

 

[it's_a_bumpy_ride]

Thank you all for your support. I may not have been a member of this site but I have been a member of E for quite awhile! Right now my seizures are ok, well status quo. It is my son Jarod that I am worrying about. We had his appt today at the ped neuro. The good thing was his exam was normal. He has been having headaches as well as the "episode" and the doc seemed more concerned with them. Don't get me wrong I am concerned about his headaches too but....well,she seemed to think I was projecting my seizures onto Jarod. She said that him saying the rooms looked backwards didn't make sense as an aura or seizure. (rooms can look pretty freaky to me) Anyway she is going to do a 24 EEG and an MRI. The EEG is set for 9/26 and of course we have to deal with the insurance company before we can schedule the MRI. I don't know what to think. Am I projecting? I don't feel like I am overeacting. Even if I didn't have seizures I would have taken Jarod to the doc after what happened. I just don't know if I would have thought that it might be a seizure. Speaking of Jarod I have to put him to bed, I will be back thanks for listening!

 

[haird18]

I may not have childrenbut I understand!

I uderstand exactly what you are going throughI've been therer befoe and am very sorry so hang in there because there are so many ofus that will be your friends and help as much as possible! Welcome to the "CWE" Forum and make many friends!
David Hair

 

[it's_a_bumpy_ride]

I am shocked! The insurance company didn't take forever....Jarod's MRI is scheduled for tomorrow at 7pm. The night appt is great. Jarod doesn't have to miss school and since I don't have a drivers license (because of seizures of course) my husband doesn't have to miss more work.

Again thank you all for the support. It is great to have some place to come and talk (write) about all of this. When I talk to my husband he just wants to fix it. Some times you just want to vent to people that get it.
I am amazed that I haven't had a seizure. Stress is my biggest trigger, since the hysterectomy, and I have been stressing about this pretty hard. I actually called a counselor today to try to see if I can get into some kind of therapy for myself. The hard part with that is the not driving. All I need is to cause myself more stress trying to figure out my appts on top of Jarods.

Ok enough for now.....Thanks again, I will be back!!!

 

[RobinN]

My latest problem is with my 9 year old. He already suffers from an anxiety disorder, mostly from worrying about my seizures.

This did catch my eye when I read your post. Keep it in mind when you are considering whether or not you are projecting your seizures onto your child.

He also might be needing some attention that is not medically related. One on one time that is non interrupted by anything else.