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 :eek: 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 :rolleyes: ). 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?? :D

Have a good night all :wave:

Lisa T

hello,

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.

Hi
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.

Hi!

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!

Sonja

HI! :wave:

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! :)

Take care,
Vicki

Hi
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.
Debbie

hi everyone, :wave:

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. :nono: 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. :wave:

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.

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.

There is great info here.

Luck and Love to all. Wendy

Hi Lisa
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
having children.
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.
Farm Ha...? :bouncing:
Luky! ;)
Thanks for introducing yourself
S.
(sorry for any spelling mistakes...)

Hi,

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 think that's about it!

Samantha

Hi,
My name is Garry,and I live near York,England.I have had Temporal lobe epilepsy all my life,but was only diagnosed a few years ago at 45.
I am taking Lamictal and am under control for now.

Hi Lisa and everyone,

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:(

Does anyone here get migranes?

Hope everyone is good.

Take care,

Tina

Hi. :wave: 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.

Hope everyone is doing well and is seizure free. :angel:

Felicia :)

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,
Donna

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.
Nikki, Anderson,SC

Hi everyone :wave: ,

My name is Jesci, I live in southern New Hampshire. I have been married for 2 1/2 years and I have a 10 yo son. I was diagnosed with Epilepsy (Generalized Tonic-Clonic Seizures) when I was 17 while at work. I am currently on Depakote 1500mg daily. I just recently went through a period of phobias and depression that was treated with Zoloft, which I am no longer taking.

Hope to get to know you all more
Jesci

g'day.
My names Eden. Im a 27 year old male and was diagnosed with epilepsy about 12 months ago.
Currently its still uncontrolled ( with epilim, tegretol and Keppra with high side effects)

Seems to be caused my a recent finding of a ganglioglioma in my right part brain lobey thingy.

Things seems to be getting much worse over time, however im so glad I found thi forum ony moments ago.
Ive discovered and leanr tmore about E in the last hour than I have in the last 12 months

Thankyou EVERYONE. Best wishes to all.

Hello Everyone,
I'm Kathy. I live in Amish country in Pennsylvania. I am 37 and have 2 great kids, 12 & 14. I had my first known seizure 12/2002. I have been controlled for 10 months. I take depakote and topamax. I also take cranberry, magnesium, selenium, & zinc to help with side effects. Have a great day. :wave:
Kathy

Hello My name is Sherrie, I am the mother of an 27 year old epileptic. She started having seizures at 16 just out of the blue. She started with absence seizures. She got married had her first son and quit having seizures. For the first time she got to drive and work. She was doing great, got off the seizure meds and went 8 years with no seizures.She got pregnate with the 3rd child and they came back, Now their back and So bad She has many in a day and the longest has been 4 hours 15 minutes long. We are having lots of trouble finding help for her here. No one seems to know what to do with her.
Don't tell god how big your storm is...Tell the storm how big your God is...

Hello,

my name is Pam, I live in Rhode Island near the beach. I was diag. over 10 years ago. Complex Partial and a list of others. Many many meds...combos.
Currently I am on 3000 mg. of Trileptal and 3000 mg of Keppra. Instead of having a few sz a day I seem to only have a few a week...so I am keeping my fingers crossed.
I have two children, 18 and 16, I am divorced.
I love coming to this message board, because sometimes I feel like I am the only one experiencing these "strange" sz's.... smells....what I call my "alice in wonderland" and then I'll read someone has experienced it as well.
It took me 2 years to get the courage to tell my PCP what I was smelling and feeling.
All of you are in my prayers.

Pam :angel:

Hi my name is Nancy,

I have had epilepsy since I was an infant, but due to the ignorance of the school system and the adoption agency my parents got me from when I was 10 weeks old, I was labeled as a behavior problem and put on Ritalin (a no-no for anyone having seizures).

I am a 31 year-old Cajun from the south Louisiana bayous, but moved from there to Phoenix 2 years ago this December. I lived in a city called Houma, and it was about 70 miles southwest of New Orleans. I was born in Houma in Terrebonne General Medical Center.

I am an EMT, worked in an ER for 4 years, did rotations as a med student, through both a neuro-trauma unit, and an EMU, so alot of my info I give comes from all my general experience with it. Rarely will I look something up, unless it is a drug or something specific someone wants to know that I don't know off the top of my head.

My seizures first got noticed in Jan of 2001 as uncontrollable shaking (mild) in my left leg that worked itself up to my butt, then into my arm, then a convulsion ensued, but not every time. My TCs are all nocturnal, and can be hard to catch.

My doc saw one (leg shaking-not TC)when I was in her office for a routine check-up, and waited for 2 more before she put me on anything. I was then put on Tegretol XR and it was increased to a hefty dose of 800 mgs.

I stayed fairly controlled on it for the next 1 1/2 years, then when I moved here all hell broke loose, and everything got way out of control, so my PCP referred me to a neuro who did a work up and a series of 4 EEGs all came back abnormal with spiking in them in the L temporal region.

He then put me on Neurontin and kept increasing it until I responded a little, the dosage is WAY OVER what the normal adult dose is. I take 3600 mgs of Neurontin, and the adult dose for epilepsy is between 1800-2400 mgs.

I left there with all my reports with him giving me a verbal diagnoses after all that, of L-TLE, and he referred me to Barrow Neurological Institute where 2 of the epis are rated within the top 10 in the country. Mine is number 7.

They did their own sort of interview had me keep a seizure diary, and no pattern evolved, totally random. They put me on Topamax--ONTOP OF what I was already taking, it didn't agree with me, and the side effects I had were awful, so after 4 months, with no improvement they got me into the EMU for a VEEG. I was supposed to be in for 5 days but wound up staying for 9 days because of all the interesting things that went on with me.

They uncovered two types of seizures I have had my whole life and never knew about. Absence, from early childhood, and Myoclonics which they think are the ones I had as an infant.

They already knew about the Simple Partials, Complex Partials, and Secondarily Generalized TCs, so they weren't really chasing them as hard as they were, to find out the location of the foci, so they could get me off the Tegretol XR and Topamax because they had toxified me by the time I had been admitted.

But the staff just enjoyed the stunts I performed for them, I guess I was their entertainment at night with these seizures.

I had 2 SPS, 2 CPS, 2 Absence, 1 Myoclonic, and they counted on the monitor on various days, a total of 52 epileptic auras for the entire 9-day stay. They said sometimes the auras don't always show up, but I got to be a lucky one, and had everything show up.

They did an EEG of their own about the 3rd day into it, that was non-sleep-deprived and in the middle of the afternoon, and it induced another Absence during the strobe light.

Last night I went to a Christmas party for a ladies group at my church and someone was there taking pictures, also a member of my church, and she took the very first one, and BAM I had fallen into my mom who was stadning next to where I had been standing. Had I been sitting, it would have just been a stare, but I took a nose dive. I even have polarized sun glasses that clip right to the lenes and you have to get the right size. They aren't the older version of clip-ons. My mom went over to ask her to not to get so carried away with it, because for every picure she takes, I will have two seizures. Well, she got mad and wouldn't talk to me the entire evening.

She wouldn't listen to my mom about it, and took picutres anyway, so I had to sit with my head in the hood of my coat when she was horsing around. Now how fair is that to me. She isn't the brightest person anyway. VERY slow and STUPID!

Any way when they released me they sent me home only with my Neurontin, and then 2 weeks later, they called me back in before my appoinment and said they had to talk to me.

I went in and they handed me a scrip for Depakote, and then proceeded to tell me that I had a syndrome called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures. That is just where they are located and where all the firing takes place. I also have firing in the anterior portion of that same lobe as well.

They told me that I have something called "intermittent spiking" every few minutes, which is similiar to "inter-ictal" activity. Spiking goes on continualy and never stops firing, where as inter-ictal is an occasional burst of activity.

Spiking is almost always caused by scarring of the brain, is constant and to sat it in short I have abnormal electrical activity in my brain all the time with no breaks.

They told me that because it is a syndrome, it is a life-time thing, and will never stop or go away. They said that it may become completely drug resistant, since it is already partially resistant. They told me I will never get to come off my drugs, and can never have surgery either.

That is my story. I apologize for the length of it, but how are you going to know about me , if I don't put in the important things.

I have failed 7 other drugs.

I currently take Neurontin--3600 mgs and Depakote--1000 mgs.

I have 5 types of seizures all together.

I have a mix of partial and generalized, so that makes it REALLY interesting.

Nancy

PS~~I also have worn a medical ID bracelet for 4 years, and have finally found the one I like the best. I went with one compnay for 3 years, then another for 6 months, and now this one for about 4-6.

It is a good idea for y'all to wear one or a necklace. That is the first place EMTs like myself will look---wrists, ankles, and necks. Purses and wallets after they get you to teh hospital. ALWAYS carry an ID card in another place with you at all times, so that in the rare event that you get seperated from your wallet or purse, it can be found regardless.

Gidday people :wave:
my name is Shane. I live in Port Augusta South Australia. I have had TLE since i had a febrile convulsion at the age of 18 months old. i then used to get what i would call an odd feeling in the mouth for about 5 seconds and while i got that i would look like i was drunk. I tried not to let it run my life. when i got told you cant do because you've got. i proved them wrong most times. i worked at the Alice Springs Hospital 18 months as a wardsman 10 years in the operating theatre as a theatre tech. it was time for a change so i left after i left i had had a second convulsion and have had 8 or 9 since then. currently i work at coles super markets as night fill manager. my medications have been: Dilantin & Primidone for 30 years later changed to Dilantin & Tegretol CR and now im on Tegretol CR 700 a day Lamictal 900 a day and Keppra 500 a day. just started keppra 4 weeks ago. since then i had had no seziures so far touch wood. i found this web site when i was looking for info on Keppra as it has only been in australia for 9 months at the time iwas put on it. hope to keep in touch with ya's ;)

Hi everyone,

My name is Tanya. I am 32 years old. I am From Brisbane in Australia. I was diagnosed with temporal lobe epilepsy after having my first big seizure in July of this year. Seems I had been having simple partial seizures for years without realising what was wrong with me. Since diagnosis I have been through three lots of medication (Epilem, Lamictal and now Keppra). I also found this forum searching for info on Keppra - they don't know much about it here in Australia do they Shane... This is a great forum - as someone mentioned in an earlier post, I have learned more about my condition here than I have from any doctor I have seen. Thank you everyone who posts here for the support they provide.

Tanya

Hi everyone, My name is Jeff. I've had eoilepsy for about 10 or 15 years. I forget how long it's been. I've never really been controled. I had neurologists accuse me of not taking my meds. One neuro didn't beleive i had seizures! The head neurologist came in and told him in a loud voice" He has lesions on his temporal lobe!" I didn't see him at the hospital anymore. I'm taking 300mg dilantin 500mg lamictal and 400mg zonegran now. I've taken tegretol, mysolin, neurontin, depecote, depakene, and some more that I can't even remember anymore. I went through gamma knife surgery in August of this year. It takes a long time, 9 months to two years to show results, so I have time to wait to find out if it worked. I only have seizures about twice a month but when I do I have clusters and they need to be stopped with meds. i was picked for the gamma knife at this hospital because my health. I have had diabetes for 37 years and because of that I have lost a leg, sever artey disease and two heart attacks. I'm lucky they did anything with me. They located the seizures in my right temporal lobe in my hippocampus, I don't know if that's spelled right. They bolted this weird thing to my head and put a thing over me that looks like a veggie strainer. I sat in a thing that looked like an MRI from my point of veiw and everyone left. They came back after about 20 minutes and adjusted it. Then the whole thing over again about 5 times. The surgon came out and told my dad "Your son did very well." My dad said, "I knew he would....How did you do?" He didn't think it was funny. I just thought I'd tell you about that little story. I liked it. My prayers are with all and God bless everyone.
Jeff

Hello everyone, I'm Matt. I'm 22 and have had partial complex seizures since I was 12. Right now I take 200mg of Tegretol 5 time a day. These things are so weird. I get that dejavu feeling before I get a spell. It's like I've been here befor, but something doesn't seem right. Then I get this scared feeling, like I want to scream an cry my head off. When the spell hits I can't talk. i can hear what people are saying, but all I can do it spit out bits and pieces of But, I and Hold on. I really can only get out the first letter of what i am trying to say. I end op repeating this trying to get it all out, but i can't Oh lets see here. I drool all over the place. Usually have to change shirts after i get one it is so bad. I also bite the side of my cheek really hard. I've had times where it will bleed pretty bad.

:bouncing:

Oh Gosh !!!

Yes, wear a medical alert bracelet !!!
A few months ago I had a hum dinger of a seizure, my neighbor just happen to come over with carrot cake...which i never got to eat...lol
Found me, called 911
Well, Pam didnt have a medical alert bracelet on and the EMT's thought I was a over dose....
Police proceded to search my home for drugs, while my lovely neighbor keep saying " No, Pam has a seizure disorder "
After two days in the ICU and a neg. drug screen, a visit from my doc and more seizures, I convinced them that I wasnt a over dose.
When I came home, I noticed I had a black and blue chest, and it hurt like hell...you guessed it...CPR.
Who needs to watch soap operas ?....

Best wishes to you all

Pam

This is for tkdmom96

I am just finishing my testing to see if I am a surgical candidate. I would love to chat with you about the surgery. Did you daughter have the WADA test?

Hi my name is Tara and I am going to be 30 this Feburary and I have had seizures for about 6 years now. They are called simple partial seizures and i am currently on Keppra. I must say that i get frustrated with them at times because i am unable to drive and feel a lack of indepedence. I am trying to handle it that is why i joined the board.

Hi I'm Barb, :wave:
I'm here for my daughter who started having severe migraines in March. They worked up until she was having them from the time she woke up till the time she went to bed almost 7 days a week. The medical field says that Migraines and siezures can go hand in hand. EVen though she wasn't diagnosed with siezures, I am beginning to wonder if she has been having some. (something to discuss with her dr.) Her neuro put her on Topomax and its working great for the migraines. :)

My daughter mentioned to me the other nite that she experiences lost moments of time. She blanks out and doesn't remember anything. Could be just a few seconds to minutes. She is not sure.

Some of you mentioned that you take vitamens with the topamax.
LISA T, you mentioned that you take Magnesium Oxide.......what does that do? my daughter is not only expericning side effects from the topamax, but lots of mental and physical changes. She has developed allergies to many foods that didn't bother before the migraines. She cognition is off.....she has to wear dark glasses in stores because the lights give her headaches. She is fatigued and nausiated most of the time. (Dr. just gave her meds for nausea). Her hearing has become extra sensitive, and she gets STRESSED out easily in situations where there are lots of people.......and its noisey.

I appoligize for rambling. This is all new to our family.
Its been a relief for me to read the other posts.
Thank for listening........
Barb

Hello! I'm Allyson. I am 28,live in KS and have had seizures since 1998. My first was in 98 second in 01 third in June 04 and I had my forth on this past Wed. Dec. 04 I'm kinda in the stage where I'm going through the why me thing. Any of you ever go through this? I'm scared,I'm mad etc..... they scare me so bad when I have them. I have been on Dilantin since my second seizure in 01. The last two seizures I had my blood level's were too low. I take 600mg a day. I hope that this will take care of it.

I am engaged and my fiance and I just bought a house. We have two cats, a dog and a Belgin horse. I LOVE animals! :-)

Anyway, I'm really glad to have found this site. I have been wanting to meet people who know what I'm going through for a long time now. I look forward to getting to know you all. :)

Just a tid bit of neat info.

The headaches we all get are NOT actually Migraines at all, they are called Epileptic Cephalgia. It is similiar in the neurophysiology, but the pain is way worse.

It occurs days to seconds before and right after a seizure as part of the post-ictal state.

Sometimes a headache will appear out of the blue, and that is fairly normal.

They are 100% related to seizure activity.

They can be treated with Imitrix if used with caution, because it advises AGAINST usage if people have a known seizure disorder, if it is active or frequent, because it can make it or the headaches worse.

They were going to put me on that, but after they read all the drugs I take, and what interacts with what, they erred on the side of just being safe, and put me on Vicodin therapy for it. One a day in the afternoon, to keep maintance over the pain, and then once it starts up, one every 4-6 hours until it stops, or I get it under control.

I was diagnosed with Migraines (so they thought) in 95, but this is what it really is, and I found out the correct term and problem while I was in the EMU this March.

Nancy

Thanks Nancy for the info. I think we need to go back to our Neru and see what he thinks............
Barb

Hi Lisa -

I'm Jo and I live in the UK about 60 Miles North of London in A place called Milton Keynes - I have had epilepsy since I was 17 I am now 33 live with my partner in a nice townhouse (which I am supposed to be cleaning as as his baby brother, sister in law, his sister and her husband and 2 children are coming to tea tomorrow) great this house is a bombsite.

Any back to things in hand I take 3grams of Keppra a day 50mg of Clobazom and have recently been introduced to Topiramata currently taking 75mg of that daily but will end up with a dosage of 200 a day - szr free for a month which is fab.

Did secret Santa at work this week which was fun I got Robbie Williams Calender for 2005 he is the sexiest man alive - but I have done no christmas shopping and am spending the weekend stuffing christmas cards to clients

So that is me really - no kids no pets :eek: speak soon back to the housework

Just joining here. My name is Betty and I live in MS. My son (Tripp) has had seizures since he was 3 years old. After he had been on pheno for 5 years and sizure free we were winged off only to have them start back when he was 11(year years later) Seizures keep coming so pheno incressed...then added Tegerol and now added lamictal. He still has some focal seizures on occasion. Now we are dealing with headaches...not sure where those are coming from. Will know more WE HOPE on Monday.
Betty

I'm Erica, I was just diagnosed with Complex Partial Seizures, I'm guessing it's from an accident I had six months ago. Weird symptoms, EEG wasn't normal. Taking Keppra 500mg twice a day and Nortriptyline before bed. I'm a baby to this, I was only diagnosed two days ago.

Hi Everybody,

My name is Russ and I live in Phoenix, AZ. I'm 38 years old and have had a seizure disorder since 1998. I don't know what kind of seizures I get, except that when they happen I get this wierd tingly feeling in my head and my hearing gets all wierd. Then I go unconcious for several minutes and drool and usually bite my tongue. When I wake up I am usually surrounded by paramedics and I couldn't tell you where I was or what day of the week it was. I'm on 2000mg of Depakote a day and usually it does well, except until recently. I have been getting very sick, lethargic, memory problems, etc.

I have been seizure free until recently and the my Neurologist wants to do the tests again - sleep deprived EEG and MRI of the brain. In the past they haven't found any specific reasons why I am having seizures and that is very frustrating. As much as I don't want there to be any problems in my head, I almost want them to find the cause and be able to fix it.

Look forward to talking to you all in the future.

My name is Diana. I live in California. I was diagnosed with Simple and Complex Partial seizures in 2001 two weeks after I returned from France - go figure!

I have been on almost every medication available - I seem to have many reactions.

Even on medication I have seizures every 8-12 weeks. I am hoping to have surgery soon.

At the moment I am on Carbitrol 1000mg.

My name is Dena Rowan. I am 43 years old now and so far, knock on wood, haven't had a seizure since my brain surgeries 2 years ago. When I was 19 mos. old, I had a high fever, went into convulsions. This left a scar on my brain and for about 38 years I lived with epilepsy. I was on various drugs and was even on 3 drug studies, almost dying on one drug study. I gave birth to my daughter Valentine's Day, 1985 and that was the beginning of a nightmare for me. Everything that could have gone wrong did. I was in the hospital for 19 days and almost died. Now, I am on SSI and getting ready for a hearing that is coming up April 8 of this year. My neurologist who did the surgery is saying that he doesn't feel comfortable saying that I can't work although I take as many as 3-4 naps a day. I take seizure medication, Primadone 1600 mg daily along with anti-depressants, and thyroid medication. All this combined causes me to be drowsy during the day. Is there any facts or literature online I could use in my upcoming hearing stating that if I go off this medication, I can start having seizures again? My dr. told me and my husband that I would always have to take this medication because the surgery wasn't 100% sucessful, now he is saying I can work. I am just afraid that if I go off this medication I won't be able to pay for it because I won't have health insurance.
Can anyone help me?
Thanks,
Dena

Hi I have the seizure and the partial seizure(blackout). I take topamax 200mg twice a day and recently started talkin keppra 500mg twice a day.
I started having seizures in 95'.Dont really have a reason for them to start except hereditary.

I am fairly new to all of this and I am in the process of having my seizures tested. I had a 24 hour eeg done last tuesday and I'm waiting on the results from my doctor (who never seems to be around). I got the newbie at the office and it seems like he's always gone. I am taking Dilantin 300mg at bed time. I thought it was helping but the seizures have started coming back. I went 2 days last week with none and now atleast one or two a day. Thats what I was going before. I'm so confused. I get this terrible headache and sometimes it lasts for days after a seizure. How can you all of a sudden out of the blue have this.

Oh, sorry this was me being self absorbed, I am 35, happily married w/ 4 children. I just started having these seizures 2 weeks ago and they seem to be everyday. Some are really bad and I am left w/ cuts and bruizes.

I hope they figure this out soon.

I hope the 24 hour EEG is a big help. I sympathize with having a doc who never seems to be around. Any chance of seeing one of his partners?

I'm Amanda! I'm just turned 21 and attending college full time and working at Menards full time as well. I was diagnosed with JME in June 2003, and I'm currently on 500mg of Depakote a day. I'm also expecting my first baby in November!

I'm Todd. 34 years old, married and I have a GREAT 4 year old daughter, a 100lb Chesp. Bay Retrvr. named Simon and a cat named Herman.

I have been diagnosed since Nov 2001 with Simple partial E. I take 150mg Lamictal 2x's daily, but I am considering changing to Zonogran (SP?) because of some issues processing while reading. It may be because of the meds or just the E.

Any info on Zonogran?

My first tonic clonic, and only, was when I was on vacation in Hawaii. My doc said he has patients that only have seizures when they travel and go through an extreme time zone/sleep change.

Thought this may help.

Well now I'm very confused. I got news today that my 24 hour EEG showed nothing. How can that be? I'm so frustrated with this whole thing. Now they want me to go stay in the hospital and have the Video EEG done. What difference does that make. He can talk to my family. He did say that it doesn't mean anything that my EEG showed nothing. I'm really confused. I want all of this to stop. I can't drive and I'm just getting depressed.

Can anyone help me with your EEG results? Did all of your EEG's show your seizures?

I am Pferg & am new here. I have replied to a few posts but, am not up to a big introduction yet! I have been a parent of a bipolar child fo almost 18 years now & I have had depression. We are just now thinking I am Bipolar?

I have already learned a lot here! Thank you all!

Pferg

Hi Lisa,
I just joined this board and think your idea of a roll call is a good way for people to
introduce themselves. My name is John, I'm 56 year's old have had seizures since the
age of 13, married with 2 children a VERY LOVING wife, 1 dog and a 22 year old Arabian
horse that my Daughter rides and loves.
Respectfully Your's
John

Hi lm niecsey and my lovely little girl has had her 3rd (poss 4th fit) this morning :( lve just posted a new thread hi all, l think you lot are bloody amazing xx

Hi, I'm Kitty
I've had epilepsy since I was 16 or so. I am now 41. I had brain surgery in June of 2002 because meds just weren't working. I was taking about 16 pills a day but still had 4 to 7 partial seizures a day. After surgery I was seizure free and med free up til this last January (for 2 1/2 years!) when I had a grand mal. Now I'm having auras daily, and am back on trileptal. There is no way on earth to describe to anyone who hasn't been there, the depression I'm in. I just found this board, and I thank God I stumbled across it. That's my story.

Hello Everyone :wave:

My name is Elliana, I'm 26 and I started having Grand Mal seizures out of nowhere in 2001. I was active duty Navy at the time, but had to get out because of them. Docs say I might be able to get the surgery. I've taken lots of meds but am currently on Lamictal and Topamax (not so bad). I'm married (he's still active duty) with a very spoiled cat that is the center of our attention.
This board is so great, because although our stories are all diffirent we know we can come here and not feel alone and be truly understood.
Take Care
Elli

:wave: Hello Everyone :wave:
I am Ethan. Im not quite new here I have been her about a year. I have been epileptic since I was 10 months old. My first seizure was on my mom's first mothers day which was also her birthday. Although my seizures have been increrasing by in number there is some good news that I am a possible cannidate for brain surgery to cure my epilepsy. I will kepp you all updated

Ethan

Hi,

I'm Lynn. I've been married for 12 years & have four children, two boys & two girls, ages 3,5,8, & 10. I'm a 35 year old stay-at-home mom and have had E since I was 13. I started out with complex partial seizures & had several of them a day for about a year until I got the right dosage of Tegretol.

In 1994, I wanted to get pregnant & get off the meds since I no longer had seizures. Doc took me off, I had two kids, & was seizure free for about 4 years. The seizures came back (but this time were simple partial) in 1998.

I had my next 2 children while taking Tegretol XR. I'm still on the meds, though my neuros have been recommending I up my dosage since my theraputic level is at 4 (should be between 4-10 (?)) & they think it's a bit low. Currently, I'm taking 200mg x 2.

Anyway, I'm glad to have found this site & have learned so much from all the posts! My memory & cognitive abilities have suffered, & I thought it was due to my kids! :confused:

Hey everyone,

Wow, it's weird but strangely comforting to hear all these different stories. I'm Eilidh, 23, and from Scotland. I was diag. with Juvenile Myoclonic Epilepsy at age 17, when I had 2 grand mal seizures. I've had absense seizures since I was about 10 but I never told anyone about them because I had no clue what they were and was embarassed. I thought I was stupid or something, or as we call it in Scotland "glaekit". I now have absenses and myoclonic jerks (a few clusters of each a day) and recently my grand mals have become worse and I'm getting them more often (used to be about 2 a year, now perhaps an average of one a week - although I had 3 on Saturday and ended up in hospital). I've been on Lamictal, then Lamictal with Topamax, then Lamictal with Epilem (the worst time of my life, I had to leave uni because of the depression it gave me), Lamictal with Topirimate and now since July 2004 Lamictal and Keppra (having NO side-effects is WONDERFUL but the seizure control is pretty non-existent). My neuro seems to be a fan of Lamictal. He's now telling me we're running out of options and wants to up my dose of Lamictal or put some Topamax back in. I've always been pretty positive about my epilepsy - the "it could be a lot worse" attitude, but it's stopping me doing the career I've trained for now (because I can't drive). I try to not let it get me down, but I'm finding the seizures a little trying now, and I worked so hard for my degree. But anyway. Reading this I'm full of awe for all the parents, partners etc of people with epilepsy, I think it's just as tough for my friends and family than it is for me. But they've been great. I now have a boyfriend who's had ADHD all his life, so fidgets constantly - it means I don't feel bad about him getting annoyed with my jerks - he hardly notices them. Anyway, my thoughts and prayers are with you all.

God bless.
Eilidh
x

Hello, I'm Rebecca. I'm 43, live in Idaho now, but was raised in Oklahoma. Gee, was I lucky my dad got that promotion in 1976! Ten miles away was this guy named Allen that I couldn't stand. Used to see him every Saturday at the skating rink in Guymon and give him dirty looks. You guessed it, we fell in love and married. We now live in Idaho and I'm completely seizure free thanks to Allen. He bought me a book written by a doctor with Epilepsy and it--as well as Allen, who had Petit Mal Seizures in high school--gave me some helpful hints. It's good to hear I'm not the only one doing well. Hope everyone will be the same soon. Love to you all. And keep the chin up. We're all in the same boat.

Hi, my name is frank and have had seizures(grand mal, complex & partial) since 1976(during Viet Nam). Am taking 1500mg keppra, 250mg lamictal &500mg dilantin. Seizures became so frequent that am now 100% disabled vet. Still hard to tell if it is PTSD or just living in the bay area(san Jose, CA). :wave:

Hello Everyone, my name is Anna. I’m married with three children and we live in Canada. I’m currently taking Tegretol but am in the process of switching to Topamax. Seizures (grand and petite mal) have been controlled for many years and I took Tegretol while I was pregnant with the kids.

The roll-call was a wonderful idea, it’s been a pleasure to “meet” everyone.

My name is Melanie, and I'm 33 years old. I was originally diagnosed with Epilepsy in the 4th grade and put on dilantin. My father had it as a child as well, but outgrew his, and has never had any problems since. My seizures were just mere fainting spells that I knew were going to happen. Sometimes I could even make them pass if I put my head between my legs, or went outside for some fresh air. Then as the years went by, I had a couple seizures induced by alcohol :( And by the time I was a junior in high school, they took me off meds. I was seizure free until 1997 (almost 10 years). I was training for a marathon and took Chroma-slim (over the counter suppliment) This provoked a grand mal seizure. Never saw it coming. It happened at work. When I saw my neurologist we linked it back to the Chroma-slim which he advised me to stop taking. Over the next few months I had a couple un-witnessed seizures. Once I woke up on the floor next to my bed, and the other time I woke up on the floor in the bathroom stall at work. Don't remember feeling weird before or anything? This scared me of course, so the neurologist put me back on dilantin. I took 500 mg once a day until I got pregnant last year. A couple years ago my neuro suggested I could go off since I was seizure free, but he couldn't guarantee I would never have an episode, so I decided to keep taking the meds. But, when I found out I was pregnant, taking the meds scared me, so I came off them. I was fine my entire pregnancy and 4 months, until last Saturday. While ref'ing a volleyball game I had a grand mal seizure. Never knew it was coming, just woke up in the ambulance :confused: Now I am back on dilantin and my neuro is suggesting i switch to lamictal sense I will most likely be on meds forever now. I just am so confused and depressed. I hate to complain though, reading other posts. But one seizure in a year???? Or maybe I've had more at night and never realized I had anymore?? Now, I'm wondering if it's getting worse? Will the dilantin still work? What about this new drug? I almost want to stay on dilantin since I know it works. :confused:

I wish everyone the best. I'm so glad to have found this site to share stories.

THANK YOU ALL!!! :wave:

Yo, Neurowreck here.....complex partials, and other neuro disorder, diabetes, arthritis, blah, blah, blah,.....past the big 40, off work on disability, that has been very hard, and adjusting to new forms of meds..... not much else to say right now....

:D Hi I'm Laura I'm 40 years old and I have Epilepsy since I was 13, I currently take 75mg of Topamax 2x a day, 1250 mg of Depekene daily. I have Grand Mals, until last year when I strted having partial seizures, I had no idea what was going on because all I would do was get VERY jumpy and jerky controllably and I would feel like I was about to go into a seizure but I never would and I would never lose consiousness. I didn't know what was happening to me until I told my Dr, and he told me you were having seizures, well seizures to me were Grand mals because that's the only kind i ever had, so I had 3 of these seizures in about 3 months, But my Dr put me on topamax and I swear to God within days of taking it I was feeling sooooo much better, I call it my Miracle Pill :D. I am married to a fabulous guy who is soooo understanding, we don't have childern and we have, no pets, I live in a small town in Canada, and I'm new to this board

Welcome to the boards to all you new members, this is a fantastic place to learn about epilepsy from people with the REAL life experiences, things that most doctors won't be able to tell you. As well as learning here you can also help others learn from your experiences.

Kapgirl - I am so pleased to hear that you've found your miracle drug. I love hearing things like that. :D

Eilidh
x

I did a formal intro earlier, but I will introduce myself again:) My name is Brandy and last Saturday my daughter Hannah, who is 5 had her first, and hopefully last, seizure. Her doctor called it a partial(focal) seizure and from what I have read it was of complex nature. She lost consciousness and went into an agonal breathing pattern before being intubated and ventilated. As you can imagine, I am still in shock and disbelief that my once very healthy child experienced this. She does not remember anything. She was flown to Children's Hospital and extubated and sent to Pediatric ICU. She had a EEG which showed abnormal activity in the left brain. She also had some lab work, including a drug screen and a CT scan which were all negative. So Hannah is on Trileptal and is very tired. I hope to learn from the education of people who have lived this nightmare.

I'm Paula, Rebecca's Mom. Rebecca is 20 years old. Functions at @age 4. Seizures daily, Tonic Clonic, Simple and Complex Partials, Startle Reflex Seizures. Has Lennox Gaustaut. Has a VNS. Has had a corpus callasotomy, Keto Diet and almost all meds in many combinations. Nothing works. She is on minimal Epival and Frisium. We opt for quality days with no side effects from drugs. Been there done that. Our doctors have been very supportive As a family, we remain strong but it has been a very long journey.....my passion for Rebecca is advocacy and making change in the system.......Paula

I'm Sarah, 26, with GM seizures that started when I was 14 for some unknown reason. Currently I'm on 100mg of Zonegran twice a day and 500mg of Kepra once a day. It's a new medication combination (only about a week old) but so far, it's worked pretty good. I've never been more than a few months without a seizure, but the future looks bright, so who knows? I also have a little nine year old son and find this site sooooo helpful. Thanks eveybody,
Sarah :wave:

Hi!

My name is Kay. I have never formerly introduced myself. I was so excited when I found this message board that I just jumped right in and responded to heavenangle24. (I hope I didn't scare you, heavenangle24.) lt's like there was someone out there that I could finally indentify with, then the more I read the more I realized how wonderful this message board is. I just want to thank you all for sharing the experiences you have. My son has had peti mall (generalized partial seizures) for 16 years now. He is 23 years old. He has been on so many different medications through the years and totally struggled through high school and graduated! (We could write a book.) I could go on and on about his experiences but I just wanted to formally introduce myself and let you all know how much I appreciate all of your information and I know in my heart the difficulty and trials of trying to deal with epilepsy, doctors, and people who don't understand what it's like to live with epilepsy. And yes, it is very hard on the people who have to watch there loved ones deal if they are not controlled by the drugs they are perscribed. I say a prayer every night for all of us. I don't always write because I am not the best at explaining things, so it's best I just read.

Rebecca

What is the name of your book? Congratulations on being seizure free.

Thanks, Kay

hi i'm a mother of 3 sons 10,8.and 6months and have had siezuers I was 13 my first one and scince i'm 29 now they have gotten worst .it is so nice to have friends like you all who understand what we all have to deal withand when times get hard there is always some one to support you and help us get through it. much love to everyone Dragonprincess

Hello

I'm a mother of two wonderful boys and a wonderful little girl watching me from heaven. My oldest son Hunter has Complex partial seizures.

Martha :angel: