My name is Staci. I am 25 and just found out I have epilepsy. I had my first grand mal seizure after having my second son. My second one came just a few days ago. My first one they thought was due to having a child. But after this one they ran more test and found that I have epilepsy. After talking to my doctors more I learned that I have been having different forms of seizures for years. They think it is from my car accident back in 2000. I am married and have 2 small children. My 5 year old is scared every time he hears sirens and that has been really hard to deal with. I am also in school for my nursing degree. The doctors have said that they really can't tell me what is causing my seizure. What really scares me is my kids. At the moment I can't be alone. I was on Dilantin but had a reaction to it so currently I am not on anything. But that will only last a few days. Anyways that is all I can think of at the moment.
New at this
- Thread starter shomann
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Status
skillefer
New
- Messages
- 2,339
- Reaction score
- 0
- Points
- 0
Hi Shomann! 
Welcome to the forum. The people here are really friendly. Try reading the Epilepsy 101 posting. It gives some good basic information. Also, as for your kids, their reactions will usually reflect your reactions to the seizures. If they see you get panicky afterwards, or other people acting newrvous and panicky, then they're going to think that whatever it was that happened is something to get panicked and nervous about. Just a word of advice from a teacher who has seizures in the classroom.
Welcome to the forum. The people here are really friendly. Try reading the Epilepsy 101 posting. It gives some good basic information. Also, as for your kids, their reactions will usually reflect your reactions to the seizures. If they see you get panicky afterwards, or other people acting newrvous and panicky, then they're going to think that whatever it was that happened is something to get panicked and nervous about. Just a word of advice from a teacher who has seizures in the classroom. 
RobinN
Super Mom
- Messages
- 7,834
- Reaction score
- 2
- Points
- 161
Hi Shomann - Welcome to CWE
I think you will feel right at home as there are a few others who had their first seizure around the birth of a child. My daughters began right after menstruation began. So hormones are definitely a trigger.
I am searching for alternatives that will lower Rebecca's threshold back to pre seizure days. She is not on medication either, and diet tends to send her over the edge. She is starting to see a trend so I think she will tend to be more careful. She uses a bio-identical hormone cream that is suppose to keep her hormones much more stable.
We also plan on giving neurofeedback a try, as it certainly makes a lot of sense and I can't find any negatives so far.
Hope you find some great reading material here. We have quite a lot of information that others are afraid to mention.
I think you will feel right at home as there are a few others who had their first seizure around the birth of a child. My daughters began right after menstruation began. So hormones are definitely a trigger.
I am searching for alternatives that will lower Rebecca's threshold back to pre seizure days. She is not on medication either, and diet tends to send her over the edge. She is starting to see a trend so I think she will tend to be more careful. She uses a bio-identical hormone cream that is suppose to keep her hormones much more stable.
We also plan on giving neurofeedback a try, as it certainly makes a lot of sense and I can't find any negatives so far.
Hope you find some great reading material here. We have quite a lot of information that others are afraid to mention.
- Messages
- 7,529
- Reaction score
- 871
- Points
- 278
Hi Staci, welcome to the forum. :hello:
If you've just been diagnosed, I'd suggest you read the epilepsy 101 thread. It's a good place to start.
We've got a couple of small kids too. I've explained to them about mommy's seizures and what to do and they handle it really well.
I think kids take their cues from their parents. If you (or other family) communicate fear and anxiety when talking to them about seizures, that is the lesson they will learn from it. Parents are supposed to be all powerful (to a child's eye). Reassure them that it's just a little problem that you need to fix.
edit: just read skillefer's post... :tup:
If you've just been diagnosed, I'd suggest you read the epilepsy 101 thread. It's a good place to start.
We've got a couple of small kids too. I've explained to them about mommy's seizures and what to do and they handle it really well.
I think kids take their cues from their parents. If you (or other family) communicate fear and anxiety when talking to them about seizures, that is the lesson they will learn from it. Parents are supposed to be all powerful (to a child's eye). Reassure them that it's just a little problem that you need to fix.
edit: just read skillefer's post... :tup:
Georgiagirl88
New
- Messages
- 584
- Reaction score
- 0
- Points
- 0
Hi Staci,
I wanted to say hello and welcome. I am newly diagnosed as well. I actually just got home from another follow up appt. for my 2nd eeg results. I know how you feel. It is overwhelming to say the least. I cried the whole way home and let it out. I feel better now! : )) I am actually really grateful because for me..my prayers were answered. I have been misdiagnosed for yrs. and blown off..I could go forever about it, but I am so grateful to finally have answers and know I was right when I knew something was wrong. There is alot to think about and take in though. I am 41 and my kids are 16 1/2 and 13 1/2. My Dr. switched my med again with this appt. I will be so glad when my seizures fianlly get under control. I have weird nocturnal ones that wake me up and my breathing is completely off etc. I just want you to know that you aren't alone and there is alot of good support out there.
Our situations are no fun..., but hopefully we will get things figured out and back on track,right? I keep reminding myself there are much worse things to have and I am really fortunate. I wish you well and much luck with everything!!! Keep your head up!!!
Take care!
Michelle
I wanted to say hello and welcome. I am newly diagnosed as well. I actually just got home from another follow up appt. for my 2nd eeg results. I know how you feel. It is overwhelming to say the least. I cried the whole way home and let it out. I feel better now! : )) I am actually really grateful because for me..my prayers were answered. I have been misdiagnosed for yrs. and blown off..I could go forever about it, but I am so grateful to finally have answers and know I was right when I knew something was wrong. There is alot to think about and take in though. I am 41 and my kids are 16 1/2 and 13 1/2. My Dr. switched my med again with this appt. I will be so glad when my seizures fianlly get under control. I have weird nocturnal ones that wake me up and my breathing is completely off etc. I just want you to know that you aren't alone and there is alot of good support out there.
Our situations are no fun..., but hopefully we will get things figured out and back on track,right? I keep reminding myself there are much worse things to have and I am really fortunate. I wish you well and much luck with everything!!! Keep your head up!!!
Take care!
Michelle
Thank you so much. I just got back my 3rd doctors app. in two weeks. I just started on Keppra. I am starting out on 500mg then by the end of the first week I will be up to 1000mg. I have had blackouts for years but I just never really talked to my doctor about them until they said I had epilepsy. Once I talked to them about it they said those are just anther type of seizure. I am hoping that Keppra will work so I can start feeling better soon. I am not sure after so long what normal is any more!! Thank you so much for the support. It makes things easier to deal with when there is some one to talk to that knows how I feel.
BuckeyeFan
Grandpa
- Messages
- 1,920
- Reaction score
- 15
- Points
- 163
Keppra
Staci,
I just finished writing to someone else about Keppra. As is the case with most Anti Epilepsy Drugs (AEDs), Keppra can have some nasty side effects, however it can also be VERY effective by itself or as in my case as an adjunct to another med (phenytek/dilantin).
Probably Keppra's worst side effect (NOT to say you will get it) is mood swings. It took awhile, but I eventually learned how to channel my temper away from inappropriate targets. Now I usually just vent at sports on TV, stupid politicians, or physical exertion.
Just be sure to hug those little ones and your husband a lot. That will be a big help. All of us here send you hugs as well.
I am a grandpa, but there are plenty of young ladies here that I am sure you will be able to relate to very easily. Also many good postings on meds. Last, be sure to visit some of the lighter side forums as laughter is a great treatment.
Staci,
I just finished writing to someone else about Keppra. As is the case with most Anti Epilepsy Drugs (AEDs), Keppra can have some nasty side effects, however it can also be VERY effective by itself or as in my case as an adjunct to another med (phenytek/dilantin).
Probably Keppra's worst side effect (NOT to say you will get it) is mood swings. It took awhile, but I eventually learned how to channel my temper away from inappropriate targets. Now I usually just vent at sports on TV, stupid politicians, or physical exertion.
Just be sure to hug those little ones and your husband a lot. That will be a big help. All of us here send you hugs as well.
I am a grandpa, but there are plenty of young ladies here that I am sure you will be able to relate to very easily. Also many good postings on meds. Last, be sure to visit some of the lighter side forums as laughter is a great treatment.
- Status