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How does your month look? Mine is busy and fun and stressful....
Busy: Work and kid-related activities are in high gear
Stressful: Property taxes are due, I'm having lots of shoulder pain so getting a 2nd opinion re: surgery next week
Fun: Getting a tree and decorating this weekend, my husband's office has a fancy-schmancy party we're going to and both kids have super cute holiday show performances
Who is next?
HView Thread
I am still wet ting my bed and surprized that Jasyn is not mad and actually gets up with me and helps me chang the sheets with me and then I can chance my pjs and get back into bed embarrassed.
NancyView Thread
Your son may have to need toget it adjusted becuase he is getting older and the med may not be enough for him anymore. Becuase he is pre- puberty nand his growing is going to pick up and fast he will need a bigger dose of it.
Ask and check with his neuro about that topic adn see what he says.
I live in Hawi'i so I may not be much of a help.
NancyView Thread
Candi, I gues I have add you to my list if ever Publisher's finds me. It is hot here in Vegas too. Thank goodness I'm an early riser. Need some 24-hr banks so I could be done by 8a. ATMs don't cash checks. Not yet anyway.
Tacos sound great, Candi. This time of year we need something that we can make that doesn't require a lot of time in the kitchen.
Everyone have a good day. Stay cool and remember the water. Love you.
angieView Thread
20 blackouts per day is a lot of lost time. As Candi and Jen have said, please see a doctor ASAP. Start that journal and keep it close at hand.
Let us know how things are going. Be strong. We care and are in your corner.
angieView Thread
Thanks for the info about fruit and sugar. It's getting close to summer and all those fruits we crave are already in the stores. I'm not a smootie person but I admit to being a frap freak. I think I can limit that to maybe one a week. It would surely save some money.
I'll have to check my juices and salad dressings. I have a salad for lunch with all the toppings(cheees, cucumbers, sunflower seeds, etc).
Glad to know that we were able to help you with the Topamax situation.
Have a good day. Hugs to everyone.
angieView Thread
I agree with Candi. A new medicine may be the solution. I am on a driving restriction for at least another 5 weeks so I know that frustration. I hope that your doctor can help you through this. I just recently had to change my neurologist because things that did pertain to my old medicine I was on that he prescribed causing my sodium to go low was "not in his area" so now that I got a copy of my medical records and changed doctors I got a solution. I hope all works out for you soon.
JenView Thread
I went back to the mainland again to see my orthopedic doc and they took the old cast off did some more x rays and put anther cast on it for anotehr 3 weeks.
Still not healed, but not from Osteoarthritis or anything lis that.
NancyView Thread
HE also founf out and is telling ALL of his patients that not only does the magnet kill watches but so can the VNS. I did not know this and have not worn one since it kept short cicuirting. I ahd the battery checked in several watches. The batertty was good but get it back in the watch on either wrist and it short cicuited. so I cna never wear another watch again. Oh, well I have a cell phone in my pocet and that can sere as a watch for now.
nancyView Thread
so I called my neuro's MA and told her what was going on and what needed to be done and she did it.
Now since the TMJ doc was not there on Friday I ahve to wait until Monday for him to get it mailed to me with a 3 month supply thru a company that deals with that. He is smart and will get it to me in HI.
NancyView Thread
Give your kids a chance to understand. Time and patience with them will also help lighten the stress on you. Sounds like the older one might be the one to help you explain to the other. Think about a toy your kids might have. Do you have any of those Christmas ornamenents that when you shake them the snow falls and eventually settles? Having a visual picture has often helped the kids I've worked with. You know the ones I'm talking about? Oh, what's the name of those?
I don't think your kids will be afraid if you try to explain. Fear will come if they have no understanding of what is happening. Let them know that this is not their fault.
You say the youngest one thinks that your husband is playing when a seizure happens? Ask him to let you know when "daddy is playing that game". Help him recognize that you want to be a part of it too.
Keep venting with us. We are here for you and the family.
Hugs,
angie
Journals are important in helping. You can log time of seizures/auras, activity, foods eaten, etc. These can be some very important points that the doc can surely use. I know it is hard to start one but it will become second nature.View Thread
Thanks for your vote of confidence. Hope everything is on the positive side for you these days.
Tiddilywink, I hope all is moving along in a positive direction for the young man. I can also say that jr high is a tough time. My first seizure was shortly before I turned 14. Suddenly the people who hung out at my house after school avoided me. It definitely hurt because I had done nothing wrong to them. I was ready to explain to them all but they all scatterd once they saw me have a seizure. This might be a time to help him understand friends vs aquaintances. His friends will stay by his side and offer him support regardless.
Please let him know that we are his friends too. We are open to any questions he might ask you to ask us.
angieView Thread
angieView Thread
You would be Surprised at how many PPL Refuse to do the same.
Course I can understand Their reasoning, also. Not everyone is sooo accepting.
Hmm. You ready to start a New Discussion??
Just use the Topic: Update. We will know it's You! 
HAHA About Bike Ride. Hubby ain't up when temps are QL enough for me to ride.
I can wait!
I figure since Summer came early this yr, that Maybe by Sept it Will be Ql enough to ride again.
I Ain't worried about.
I get Bad Feelings (Paranoid of meds no longer being effective) about riding, until I am on the back & going.
Chek out Nebraska Epilepsy Foundation for any Events.
One of my Fav people on FB has an event in his State (New Jersey) every weekend. He has several Bands/singers participate. For March Epilepsy Awareness Day, he started a 50 Concerts, 50 States Event. All States Joined in. At least one city per State, sometimes More. NV was the Last to join. I got to go see the Mavericks perform.
I was supposed to be there to hand out Epilepsy Info, but, was unable to becuz of such Short Notice & had Nothing to hand out.
I was very Disappointed that the Band never even Mentioned that they were there to Support us.
But, I did meet a Young man whose wife had Brain Cancer & seizures, whose whole Family had been given comp tickets by the Band to attend the event.
I am trying to Encourage Eric to try this Event again in November. But, so far, no Go.
He will try it again 4 March though.
So, keep an eye out. I will post if/when I hear More. 
Hope your day is better, today. Hugs
Love CandiView Thread
Remember, although Proper seizure first aid is a Necessary 'evil' Your kids still need to learn More. Check out the books on Amazon.com. Take note of Authors/Titles & visit your Local Library & talk to the Research Librarian about the availability of any books. They will either find a Library that does have them & borrow them or they will look for Used Books that will be cheaper than buying brand new. There are Books for All Ages Listed.
Yes, ask us any questions you want that they don't answer. If we Don't know the answer, I will personally Try to Find the answers for you.
I got lots of Groups I can ask & Google/Yahoo Search always seems to have answers.
Plus side: Jason can relate & may have even more Input for you.
So Please keep in touch. 
Love CandiView Thread
I recall a reply from our ol nemesis Bruce about this. As he explained it: We each have a different tolerance for meds. Some of those w/ Seizure Disorders Need more than the recommended dose to control seizure activity. I think Your DR increased the med becuz your seizures are still uncontrolled.
Advice: About All you can do is keep up w/ your Journal. Give the new dose 4-6 weeks eat Healthy, nutritious meals, Unless you develop harsh side effects, I wouldn't worry too much about the increase. Remember, when trying a new dose some breakthru seizures May occur. Good Luck on the new dose. I Hope it works for you. Hugs!
Love CandiView Thread
That's very nice of you to wish me a happy fathers day.

As a matter of fact I am a dedicated Steelers fan. Cowboys are like cuss words to me. Lol. I probably will never be 100% controlled. It's also a reality I have come to accept.
JasonView Thread
Thanks for clarifying what you were saying. It is so easy to start talking about a situation and forgetting that others don't know it as we do. Think about how our docs fall into med terms when they with us. We have to remind them that we don't have medical degrees. "Say that in general English, please."
Anyway, I hope the past posts have been useful to you in some way. Til next time, take care.
angieView Thread
This conversation is over 2 yrs old & Unfortunately, Carisa has never contacted us since her last post.
I Hope you read my replies, too.
If you follow the links I provided you can Learn more. Advice: Take a Deep Breath! Learn Seizure First Aide! Teach anyone/everyone who comes in contact w/ your child the Proper procedures. But, enforce the Fact that they Should Remain Calm!
Please, start a Daily Journal for your Daughter (Info under Tips) I, also, recommend you try to video a few of your child's episodes. Show it to the DRS! Also, chek out our Resources. Knowledge is Power! If you have more questions/concerns, please let me know. We are here to not only provide Info, but, to Support you during your Journey, also.
Never give up Hope. And Never Give Up searching for answers. It will take Time & Patience to find the Answers for your Daughter. And possibly more than 1 DR Opinion. But, I will be here for you every step of the way. Keep us posted, Please. Don't do like Clarisa & keep us 'wondering' &/or worried. The updates you provide may help someone else in the Future! Hugs
Love CandiView Thread
sounds like the two of you have been holding in many thoughts. This is way rambling on is always good. Someone will hear/feel what you're saying.
Kim, what you said about the unknown seeming familiar to you touched a memory. I had similiar experiences for a few months following my lobectomy. I often didn't recognize the people I know(coworkers, my nueros, students,etc) but the strangers felt like long-time friends. I later did some checking and found out that this condition is called "hyperfamiliarity". Hope I spelled that right.
Most of my EEGs came back with no seizure activity too. "Normal". But the sezures where, just not for the EEG. As Candi said, timing is everything.
Spiritually, I have always felt that epilepsy was put on my plate because I was the one who could handle it. I simply had to want to be stronger than the seizures. So I patiently waited(even during times of disappointment/frustration) and continued to move forward. It just wasn't always at the pace I had planned. But I persevered and am happy.
Again I must say that the kids I have worked with have been an additional spiritual support. I miss them dearly.
BTW, I hated those VEEG. One positive always came from them. I always had the chance to talk/share with others who wre in similiar situations. The time in the VEEG is also an opportunity to help the newbies.
Look at the positives. Good day, ladies.
angieView Thread
I got my first grade back, at UH. It was a test from the Basic Nursing class and I got an A on it. I only missed two answers out of 50 questions.
Man, they make it tough. LIke I said I am going to be lucky to even get thru all this.
I got 4 yrs of this with an added 2 becuase of the neuro science behind it I am taking classes at the same time. I want to work in an EMU someday, but I doubt that will ever happen, but if it does I will be ready for it. I will have to take CEUs every so many yrs to keep with all the changes in medicine and take a special baord which will allow me to work in the EMU. Nursing in there is different than nursing in a regular hospital.
NancyView Thread
You mite hate the Idea of wearing an Adult Diaper at nite, but, it sure as heck beats having to change sheets 2 or more times a nite. Also, try not drinking Anything at least an hr or 2 B4 bedtime.
As to your previous post about broken ankles, Yes, you told us.
HUGS!Love CandiView Thread
Thank you for joining us & thank you sooo much for your Input!

I guess you know Now that some of our meds & Heat do Not mix. After meals?? I am not on the same meds you are. But, I am fortunate that I only have to take them once a day. And I allow at least 30 minutes to an hr After meals to take them.
Are you having any other Side effects w/ your meds? Since you are on Dilantin, it is Highly Recommended that you have yrly Dental check ups.
I noted in your other post that you learned Alcohol was a No-No. I, personally, had to learn the 'hard way' about that, too. I haven't touched a drop of alcohol, since my 'Bad Experience'.
I do Hope you stick around & keep us updated as to your progress. If you have Any questions, please Ask! No question, when it comes to Epilepsy or our meds, is considered 'dumb' in my book. Hugs!
Love CandiView Thread
IHave had several ambulatory EEGs and only one brought up bad sz activity.
The last ambulaotry EEG I ahd was about 9 months ago and it showed NO sz activity. My neuro said that it either meant my meds, at that point, were working, or the EEG did not pick it up. THen he did another one 6 monhs ago and more sz activity showed.
I live in HI so I fly in to to the mainland see him every 3 months. He does NOT want anyone else taking care of me adn the same with me. it is a 6 hr flight. Sometimes a lay-over, sometimes jsut a switch.
NancyView Thread
I have have trouble with them this last 2 weeks non-wtop and I am getting sick if them; Havetot take t ake Imitrex for them.
for me the headhackes are a ersult of menegitis and encepheltis together at the same time. I started with them in dec in 95.
so I have a 17 yr hx of them.
I can tell a sz headache from a normal Migraine.
NancyView Thread
I live in Hawi'i and go to UH and they have a place in the iniversity where students with disabilities can get get help with their problems.
I have lareay been there and haev at leat 12 accomadations.
Things got waived, such as open book tests, notes during closed book book tests, tardiness was also waived, when there was a limit of how many days were allowed to be missed in a class, I could miss as many days I needed if I had a sz the day of or night before class, and need the time and couldn't make it to class, allowed to have a note-taker, so I did't really have didn't have to take notes because I could keep up with the teacher, etc. The list goes on.
You can do it. Yo ujust haveto ask around about it and it is there ever school has have to have one. Lot people have disabilities and need the help.
At LSU I managed to get 14 accodations.
They had a room just for people that had propmes like us and had a swipe key that opnly we had and it was really cool.
Good luck with this,
They have stuff and you can find it just ask around.
NancyView Thread
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