Newbie from Athens, GA

[jkj1995]

Hi Everyone,
I was diagnosed with E as a child, put on Dilantin for 5 years, and outgrew it. Then when I was 20 I had a beautiful daughter and the E returned, although I didn't know it until about 3 years ago. I have had 3 grand mal seizures in the past 18 months and am Topamax now. I am having my 11 year old daughter tested for E because she has been having some problems with "tics" that her dr. thinks could be seizures. My mother also suffers from what her dr. calls "stress related psuedo-seizures". So my hubby and I are kinda freaking out at the moment.

[Bernard]

Hi jkj1995, welcome to the forum.

I really don't know how to respond to your "freaking out" other than to give you my regards. Hopefully the testing will give you some conclusive result one way or the other.

[brain]

JK

Welcome to CWE and sorry to hear that
you're freaking out. I'm sure the Doctors
will find out ~ as it takes time sometimes
to find the answers and reasons.

Glad you've stopped by, Hang around and
post!

[execwife2002]

jkj1995,
Welcome to the forum. Sorry to hear that you're freaking out. I am a mom of a 19 yr. old son who's been having nocturnal grand mal seizures since the age of 12 1/2. He did go 2 1/2 yrs age 14 without any seizures. When we moved to Florida the seizures started up again. In fact they started the day we left. Stress?? Go figure. Anyway, glad you've found your way here.
Marian

[RobinN]

I agree it has quite a bit of getting use to, and the glitches it throws around to loved ones isn't always easy. Freaking out never helps anyone under any situation. For me I had to be quite blunt with my husband. I told him to either learn about it so that we could discuss it as intelligently, or back away and let me go it alone. Worrying just doesn't cut it with me. I told him to worry in private, because that just does not help her in the least. He has decided to let me handle it, because there is a load of info to assimilate. I work part time and can devote myself to finding answers that help my daughter. Thank goodness for us, because her HS is glad that I am able to drop everything and be available if necessary. Life works in interesting ways sometimes.
This group has helped me tremendously. It is a place to discuss my ideas, learn new alternatives, ask questions, and not be looked at like I am off my rocker (or at least I don't see the looks that they give me). I hope you find it a place to take a deep breath as well.
My daughter has had 6 tonic clonic (gran-mal seizures) just this month so I know how scary it can be.

[execwife2002]

Robin,
I am a Special Ed. teacher and have been very fortunate to have my principle ( who just happens to be one of my best friends) be very understanding when it comes to my son. My husband is retired so he's usually available when needed. My school lets me leave in a flash whenever my son has a seizure. My husband is similar to yours in the way that he gets "weak" whenever our son has a seizure. I take over and care for him. My husband assists as needed. He is a very smart guy but the emotions of seeing his son have a seizure just blows his mind (no pun intended). He researches and reads up on it to learn and is always making phone calls to hospitals, doctors etc. It's just the stage of when the seizures occur that he goes to mush. Do you know what I mean?
Marian

[RobinN]

No I don't because my husband has never witnessed a seizure. I think he might be a different person after he sees one. Rebecca's tend to be during the day. She is up early for ice skating, works physically hard before school. So I don't know if it is a small drop in bloodsugar, or if her mind is tuning out, or needing a rest and then KABOOM! They also have flourescent lights, which we don't have at home. I can't seem to put a finger on why it happens there. Her first two were at home, and she says she has had others in her room alone.

Yes, when I was subbing at a particular school (kept it there last year for as long as I could) the principal was a good friend (my children attended that school) and she offered that I should not even question leaving if I were to get a call from Rebecca's school. We have a new principal and so I will have to decide what I will do. For now I am just not taking many jobs. I am an artist and I want to paint. Problem is I need a sponsor...

[Elisa]

jkj1995,
. He did go 2 1/2 yrs age 14 without any seizures. When we moved to Florida the seizures started up again. In fact they started the day we left. Stress?? Go figure.
Marian

Not to get off the subject but ... I find that very interesting my seizures started at about 12, were under control till I was 15. They started again when my family moved from Maine to California. I do think stress was what did it. Mine were never to be controlled again.

[execwife2002]

Elisa,
Do you think that the stress you felt during your move to Main has still remained inbedded subconsciously in you that it still triggers seizures?
Marian

[jkj1995]

I had 2 more seizures this past weekend outta the blue. The first one was pretty mild, I was in the restroom and had an aura, knew one was coming, then forgot what I was doing or how I got in there. I went on to bed and my hubby asked why I was in there so long & I said I think I just had a seizure. I got a snack and went back to the bedroom and then I had an overwhelming sense of fear, like another one was coming. About 10 minutes later it did. I felt the room getting smaller and darker, smelled a funny smell (like when you turn the heat on the first time and the coils heat up) and there I went. I had enough time to tell my husband I'm fixing to have a seizure, to just please hold me, and I got stiff as a board and convulsed and turned a littled. I didn't pass out, but I couldn't hear anything he said. He said it lasted for about 2 minutes, it felt like forever. It hurt so bad. It really sucks. It's been almost 7 months since the last one.

[Bernard]

(((((((((jkj1995))))))))

[POSITIVEPERSON]

Hi jkj1995: I am sorry I am late welcoming you to the board!!!!!! But better late than never!!!!!! Welcome !!!!!! Nice meeting you!!!!!!! I will be 52 yrs old next month and I have had epilepsy since I am 11 yrs old. I have absence , absence clusters , complex partial seizures and grand mal. The complex partial seizures disappered but they were their for awhile. My szs have changed over the years . I have tried all the meds on I could in Canada when I lived there as well as the USA. The past two years I went for homeopathy cause I ran out of meds.
2 months ago I started the Gard diet and it was the second time I tried it and this time around I loved it !!!!!! See what happens when your desperate,your more accepting.

wishing you and your daughter a seizure free life
Riva

[RobinN]

jkj- my daughter just had a seizure yesterday. It is a very scary event. Rebecca has no warning though and crashed pretty hard, so the EMTs were called.
What has helped me, to get a little better picture of her events is to keep a very detailed record of events leading up to the seizure. Any changes to diet, home life, work, environment, all needs to be accounted for. Even emotional state.

I hope you can find some answers really soon.

[brain]

jkj1995

How are you feeling now? Sorry you
had seizures earlier but I'm hoping
you are doing better now!

[jkj1995]

I feel pretty "normal" now, for the most part. It took me the better part of three days or so to get to feeling "normal" though. Thanks for asking. Does anyone have a clue what kind of seizures these sound like? My neurologist said I had "generilized epilepsy", but I know their has got to be a better name for them. I thought they were partials but then I got confused because I couldn't hear anything but I knew where I was. Sorry if I don't make any sense.

[brain]

Simple and Complex Partials can generalize.
One example from the past of a generalization
is:

I had a Complex Partial that secondary
generalized into a Tonic Clonic (aka Grand
Mal). My Doctors have informed me that
I have secondary generalizations, but
I have no memory of any of these.

But now you have me curious.

I never "heard" a seizure - if you are
in reference during a seizure?

Are you are referring to an "AURA"
before a seizure strikes?