There seems to be alot of new names on the board lately, so I thought maybe it was time for an old time roll call... how about it?
I'm Lisa and I have had E for almost three years now. I'm currently taking Topamax 75mg 2x daily (hoping to get it increased next week ) I also take Magnesium Oxide to help with the side effects of Topamax. The longest I have been seizure free in this three years is 34 days, but no complaining that is way better than every two days like in the beginning!! I have GMs.
Did I forget anything?
I'm 31 and married with two wonderful kids and we have three dogs and at last count 14 cats( but 3 are ready to drop kittens anyday ). Gotta love living on a farm, its everyones favorite spot to drop animals. And one horse who is 33 (yes its no typo 33) years old! Did anyone need a cat??
Have a good night all
Everyday we learn something new! It may not be important or news worthy, but it should remind us all that no one knows everything!
we live on a ranch too! we board horses for people and have about the same number of cats. that is too funny! My son just started having them a month or so ago, mainly in his sleep. This is all new to us so I am still learning we go in for our 4th eeg tomorrow morning . How often do you have the sz, they seem to be in my sons sleep or right before he wakes up in the mornings, they have him on trileptol 600mg 2 times a day. well i just wanted to say hi, it sounds like we may have alot in common. bye for now.
I'm Susan. My husband had his first 'known' seizure March 1st of this year and is on Dilantin now. The seizure was due to a diving accident in 2002. We're playing with the meds to make sure they are the right doses and also looking into other things to see if he's still having them at night or maybe another problem.
We live in Indiana and have 3 kids (two boys and one girl).
Hi Im Tracy. I take 100mg 2x a day of Topomax and 400mg 2x of Tegretol XR a day. I started having seizures in 95'. Im 25 years old.
The reason I started having seizures doctors dont know.
I take a handfull of viatmins everyday.
Cause with Topomax you have to take multivitamins cause it robs your body of nutrients. So you have to replace your body of the nutrients.
I started losing hair. So I am taking Biotin.
I am using Nioxin products.
I'm Mandi, I'm a 21 year old college student. I was diagnosed with Temporal Lobe E a month after my 16th birthday but was rediganosed with Juvenile Myoclonic E three years ago. I'm on 200mg x2 of Carbatrol and 75mg x1 of Lamictal. As of the 16th I'll start the switch to get me off the Carbatrol. I haven't had a grand mal seizure in 5 years and any other type in a year. I do get myoclonic jerks upon waking which is what we're trying to fix with the Lamictal.
"there's no such thing as normal, just a lot of weird people with things in common."
I'm Lori I have been diagnosed with Epilepsy since I was 12 months, I am now 26. I have Temporal Lobe, Tonic-Clonic and Partial Complex. My doctor has me on 2000mg Epilem and 100mg Lamictal daily. My siezures were very numerous but are realitivly controled now thank goodness.
My name is Sonja. I am 38 years old, married, and have 3 children. 2 boys...ages 10 and 9 plus 1 little girl...age 4. We live in California. I am in the process of being diagnosed right now. They are checking for epilepsy, but now suspect narcolepsy. In 2 weeks I'm going in for a sleep study over night. I obviously don't hope it to be epilepsy, but if it is....the one good thing is that I'll get to stay on this board and all of you seem so kind! I'll keep you all posted. Nice to meet you!
I'm Vicki and our daughter Katie has had E since the age of 9 months. She is now 16. (well, in about 2 weeks, but she considers it close enough!) She has Complex Partial and Simple Partial seizures.
She just had surgery on June 7th to remove her seizure focus, so far, so good.
We have an appt. with our Epi and the neurosrgeon on July 21st. We'll see how that goes. Katie is doing super!
Welcome to all of the new people! If you are looking for a specific answer to your questions, make sure you give enough detail and don't be discouraged if someone doesn't answer right away. It may mean that we either haven't had any experience with what you asked, but don't give up on us, try again!
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.
I'm Debbie and my daughter Bonnie is 13, 14 in 3 weeks. She was diagnosed at 7 years, had it longer we just didn't know that was what it was. We're in the process of finding the right med for her. It was controlled pretty much until last year, good old hormones.
i'm jen. i havea 5 year old son named gage. we just found out this past november or so that he has epilepsy but think he may have had it since 1 1/2 years old with his night terrors. we didnt catch on till he started haing really bad temper fits and dr ran some tests and the EEG came back with siezure activity.. its more of a petit mal epilepsy and he only has them when he is sleeping or tired. since we have had him on the medications, he is on zarontin, 2 1/2 tsp. twice a day, he has been doing very well. only i cant get him to take it anymore. so i may be posting with a new medication here soon. the pediatrician has good hope that he will grow out of it as he gets older.n we have been through the EEG's and we also did a VEEG back in june.
just want to jot a quick note to all the newbie's to welcome you to the board. i always say this is the place for the best friends you never meet. this board has helped me quite a bit and i believe i ahve helped some of them too. welcome, stay awhile and put your feet up.
__________________ To the world, you might be one person, but to one person you might just be the world
My name is Jessie I was diagnosed with epilepsy at 15 years old Im now 23. I went to the mayo clinic in minnesota in April of this year and was diagnosed with left temporal mesial temporal sclerosis and atrophy in the left hippocampus. In January of this year I recieved the VNS and in Feb started taking the depo provera shot Ive been seizure free now since March 14th.I am going next week to see about getting the vns removed.
I am married with 3 children ages 5,4,and,2.
__________________ If GOD brings you to it... He WILL bring you through it.
Hi, My name is Wendy and I have a 7 year old son named Jake. He had his first witnessed Grand Mal seizure in April, but we think he had some before then in his sleep. He has Generalized Absence seizures and Generalized Tonic-Clonic Seizures. He is currently taking 120mg Lamictal/day and has been seizure free for 3 weeks. We are still new to this, but it seems the more we learn, the less we know.
I have 2 cats and live in a small small apt. in New York City so i dont
need any more cats...
i was diagnosed with E. 6 months ago...a long road ahed of me...
I'm 29 yo. and just befor it started my husbend and i were talking about
We put this idea on hold until I get the spells under controll.
I hope it wont take too long, so far i have side effects but still get spells
1 or 2 tims a month.
Thanks for introducing yourself
(sorry for any spelling mistakes...)
Let's see. I'm 38 and have had complex partial E (or is "temporal lobe" preferred now? Hm..) since I was 21. I was undiagnosed for 8 years, not for lack of testing, but instead, because of a neuro who looked at the EEG report, which said "clear seizure disorder" and ignored it, telling me everything was negative and I should see a psychiatrist! Wasn't until 8 years later when I requested the records (long story) that I found out what was wrong. I'm on 400 mg of Tegretol 3x a day and am <knock wood> super well-controlled.
I'm a web designer and web editor for a living. I also train dogs part-time (I trained assistance dogs full-time for 16 years!). I live with my husband and our much-loved and much-spoiled little pooch.
I'm 31 yrs.old, single (just a boyfriend whom I plan to marry), and from the Midwest. I have been taking Dilantin for six years. My first seizure (Grand Mal) happened when I was 25 while at work. My dosage was just recently increased 50mg which makes the total daily dosage 350mg. No one in my family has a history of E and I have never done anything to provoke this- at least I think...
I haven't had a seizure in all of these six years so why can't I get off the meds? That's the question my neuro seems to not want to answer. AT least she does but gives me the answer of "You can't drive for at least six months!"
I've also been diagnosed with depression/anxiety/severe PMDD -I mean, I get psycho-emotional...Supposedly due to the Dilantin. So not only do I take Dilantin, I take PaxcilCR, too. THis is making my brain foggy
Hi. My name is Felicia. I'm 30 (today) and a mom of a 12 year old. I have a wonderful boyfriend that is very supportive of everything that is going on.
I went to the neuro just yesterday and he actually diagnosed me finally with seizures. He always called them spells before (for 2 1/2 years). The reason why--My daughter was with me and was able to explain what I do when I have them. (MRI & EEGs came back normal) I think before he thought I was just crazy. I couldn't explain things to him-- the aura's and what people told me I did.
I was doing great for awhile there and had no seizures. (long story of changing meds because of a different problem I am seeing him for) Then at the end of May they have started back up again. He has upped my dilantin from 400mg to 500 mg a day now. We will see how that works.
Question was asked if anyone had migraines. Neuro gave me meds for what he says now are migraines too.
Hello! I just registered about 5 minutes ago. Had no idea this place existed..lol Looks like a friendly bunch here. Hope you don't mind me joining in. I've had epilepsy for 20yrs, with several szs types. Just moving to VA this coming week as my fiance' and I are getting married up there this month.
It's a wonderful time in our life. I'll be real busy with moving and settling in for a few weeks, but hope I can come back and see how things are going, here again. God bless,
Hi, I'm Mike - age 33, sz activity since teens. Married 14 years to an awesome girl, two super children (a girl and a boy). Currently on Dilantin, doing well, getting driver's license back this month after about 13 months without them.
Hey, Im Nikki - age 21 Me and My husband have 2 boys age 14 months and 4yrs (great ages) My 4yr old has Dandy Walker malformation, hydrocephalus with a Vp shunt, polysyndactly, and syndactly on his hands, epilepsy ( complex partial seizures) a few grand mal which we were hospitalized for because those get really bad. Status epilepticus where he has them back to back. We are controlling them by Topamax sprinkles 15mg 9 pills a day and Keppra 250mg twice a day. We just started the keppra we dont know much about it. We hope he does well with it. He was on phenobarbital for a year and I made them take him off that stuff made him lifeless. He slept constantly. With Dandy Walker it can be very disabling but Austin walks, has limited speech but knows sign language ( better than mama) which can be frustruating for him at times. His favorite cartoon is spongebob and he is going to Universal studios in Dec. The make a wish Foundation is sending him there. He is very excited. We have been through alot with his seizures. They can be very scary. We have almost lost him a few times with the seizures. We have spent countless nights in neuro icu. We hope it all will get better and under controlled 100% just like I hope it does for all of u and the kids. Hope you all are doing well and you all will be in our prayers.