dilantin doesent work anymore

[brainpain]

i have had grandmal seizures starting about 13yrs old. i have taken 400mg dilantin for 20+yrs. i had a seizure and wrecked my car thursday. i need a new seizure med. i am a little scared to switch meds but have no choice. can anyone give me some ideas on good seizure meds? i need meds that will control them . any help would be helpfull .i go to my doc on monday,and would like some ideas on meds.

[brainpain]

i got a call from my doctor friday and im still in the dark. my bloodwork still is low. my dilantin still low.im taking 400mg day but its not staying in my system. i dont understand i had dilantin in the er by iv and been taking the 400mg every nite but its still low. i am still getting dizzy spells and a feeling of a bubble in the top of my head. i have some brain fog,staying tired,sometimes the feeling that everything is going in slow motion. my doctor doesent know how to help. she refered me to a ep neuro but thats 11/2mnts away.i am depressed and angery and confused.i just want to get to the bottom of this.im very afraid of changing meds. i cant take the generic dilantin,i had a seizure within 3 days of taking them. i dont plan on driving till i get the ok and seizures are in controll but i dont want to have another seizure in front of my kids.any advice on another seizure med that works and what side effects would be very helpfull. thanks

[KixNgo]

nod,

'The understanding EP is a forever merry-go-round, just when you think you've got it, and can leave, someone puts another quarter in the machine.'  

my warmest hugs...

[brainpain]

i understand just me wreaking my car with my kids in it is hard to get over.my 6yr old is having nitemares. she has never seen me seiz and never been in a wreck.i have taken it hard as well, i couldent eat for almost a week.i look awful, i have a knot the size of a golf ball under my eye and bruised from my eye to my chin "yellow-green-purple"i have been so tired and dizzy feeling.i am getting alot of bloodwork done,havent heard anything from the test. i have 3mnts before i can drive anyway.i done the 2 pills in morn and 2 before bed dident work as good as 4 before bed.i have been under alot of stress.i hope stress is all it was.im not mad just having hard time understanding it myself..

[KixNgo]

I'm sorry i didn't mean to sound condisending(spelling?) or anything, I completely understand the position with driving,
I was taking my dilantin all at night as well, then my neuro said to divide dose in half, and take one half dose at night still but the other half after breakfast, this has actually helped some..  I hope you are getting your levels checked often, especially if you take an extra pill here and there, dilantin levels to high, can be just as destructive as levels to low.. I found this out, hard way..
levels to high= tired,, off balance,, no appitite,,  a constant feeling like 'somethings off,,  hope to hear from you soon ,, =)

[brainpain]

i did the pill container for a long time. my neuro told me to take my 4 dilantin every nite before i go to bed. i have took them that way for 7yrs.the thing about my seizure i was fine when i left home and i got dejavu and thats all i rember. it hit me that fast. i dident have no warning or time to do anything. i allways had my hubby or mom to take me places i needed to go if i felt bad.my neuro told me to take an  extra pill if i felt one comming on.i have alot of bloodwork to do in the 3mnts.trust me if i felt one or had any warning i would have never taken the chance driving with my girls.they are fine not a scratch .i wouldent taken the risk of wrecking my car.

[KixNgo]

Yes, keeping track of meds is a feat in itself, , a good pill container, with all 7 days on it helps alot,  and since you are a computer user, setting alerts, (calender events) also helps. even your cell phone can be used as alert reminders...
The auras,. I have had then up to 2 or so days before a seizure, and i've also had seizures with absolutely no aura, once i was getting ready for work, all fine at sink curling hair, then i woke up on the floor bad bruise on forhead(hitting sink) and back of head(hitting shoe shelf).. on the average, my aura (deja'vu) is about 30sec-2minutes.
I have managed to keep license, I get re-evaluated every 6mo. by state and doc.
but i have always said, the day i get any aura while driving, will be the last day i drive.
And if i feel least bit 'woozy' (I call it the whirlies) I stay home, or get someone else to bring me..
best of luck, Carla

[brainpain]

i dont know how you could keep up with your meds. im so sick of doctors.i allways get the neuro that is a know it all or the one that looks at you and tells you to come back in 3mnts. my doctor called and my appt with the new neuro is in the middle of jan. it drives me crazy she dont want or know how to ajust my meds.i have to be seizure free for 90 days to get my license back.i wish i could find a neuro that was caring and knew what he was doing. i wish the lighthead feeling ,dizzyness would just go away.still waiting on blood test to see if dialintin is where it needs to be.thanks bp

[brainpain]

i do have an appt for my yearly mri.i will ask if he will check my cerebellum while making sure tumor hasent returned.the thing about this seizure is i got dajvu then thats all i rember.i dont rember driving and i was just about 500ft from where i was going.imstill light headed and a little dizzy,im hoping its from the swelling.my old neuro told me losing sleep will bring them on to.i'll let you know how my new neuro goes.thanks bp

[KixNgo]

lol.. exactly.. I'm off to a new neuro, more of the same 'ol tests.. they adjusted my dilantin from 500mg/5days a week and 400mg 2 days a week,  to 500mg 4days a week and 400mg 3 days a week.. thinking thats really not that biga change..
somehow someway my bloodthinners got to be twice what they should be, , and they increased my synthroid from .125  to .137/day  this is suposed to stop the middle of the night chest pains, and extreme hotflashes all day long..?
I too have become fairly cynical of neuro docs.  
I had one DR loved him, the one who finally diagnosed me, of course he's gone off to be a proffessor at the mayo clinic now .. 'humph'

[toby45]

I'm lucky in that on certain days I feel a little "woozy" and know things are not going to go well that day. So I try not to drive or work or do much of anything on those days. I have the mini attacks preceding a grand mal - rolling of eyes and my hands suddenly jerking back from the elbows. I'll also drop things like I've touched something hot, and my mind is usually going at lightspeed.

Things that provoke an attack are multitasking, eating or drinking anything sweet and of course stressfull thoughts or emotions.

Thanks for the feedback. This is the first time I have heard that Dilantin is depleted by stress - it makes perfect sense. My neuro has asked me to slow down and even try meditation. Have a super stressful job, and long hours with weekly travel. Hard to find time to meditate when you have 15-18 hour days everyday.

I'm glad to hear you're seeing a new neuro. Let him/her know the big picture and all the emotional/psychological issues and how its impacting your life. I usually take a notebook with my thoughts and symptoms written down and read from it. It makes them take me more seriously and they are less likely to rush through the appointment.

Try to take it easy - ha - so easy to preach to others! I'm going to try and keep stress levels down as well.

BTW, ask if you should take a bone density test, MRI to check Cerebellum, and short term memory loss. I had these done. I'm a 45 yo male, with positives on bone loss and shrinkage of Cerebellum. We're still watching the memory loss thing. Current neuro says stress is a factor. Ha. When they're at a complete loss of diagnosis they say one of 3 things: Virus, Stress or Idiopathic! Wish I could use similar excuses in my job to explain that "sorry, I don't know what the hell is going on, but I'm still going to charge you a **** load of money!" :)

Keep me posted bp, and best.
Toby

[brainpain]

hi toby,my doctor faxed my nurosurgen my er report .i guess like you i've proved him wrong.my doctor told me stress depletes dilanitn from your system.my doctor dident make any changes to my meds, but refered me to a new neuro.i have alot of swelling in my face and eye.im feeling weak and dizzy,i guess i gota work threw the fear all over again.i had a dilantin level done and she gave me lexapro for anxiety.i hate the way doctors act like they know all about seizures then they cant tell you anything about them.i have been feeling lightheadded,dizzy shakey,just like im gona pass out.when i have a seizure i turn my head to the right.do you turn your head to? thanks for your help and time.take care of yourself,bp

[toby45]

I've become quite cynical of the docs. They always told me my seizures were idiopathic (no specific cause), then suddenly had a major seizure. They found I had Astrocytoma - Stage II. No surgery, but went thro radiation and it cleared up. One neuro said I will now be seizure free and he would stake his reputation on it.

3 weeks later I had a seizure - and I don't think much of his reputation anymore.

I know what you're going through - it's scary, stressful and you feel like you're walking on egg shells with yourself. I too still get the déjà vu attacks too. Best tip on that one is to close your eyes and breath slowly to calm yourself down. I find that if I keep my eyes open the more visual input I get only makes it worse. So I usually go and lie down and try and slow my thought process down.

Best wishes to you my friend - you're going through a tough time, but I'm confident things will work out. Just make sure you move on to a new neuro if the current one is dismissive.

Toby

[brainpain]

i did try topamax,it dident help just gave me the pressure behind my eyes. the thing that i dont understand is i took my dilantin every nite before bed and when the er doctors tested it it was very low.i have been getting alot of dajvue , its very scarry. i have never took more than 400mg and its worked good till now. i have had 3 grandmaw seizures this year. i havent been told about the side effects.i had a pituitary tumor and had to beg them to write me a script for my dilantin.i had 3 neuros tell me it was the tumor that made me have seizures. guess they were wrong. the tumor was removed in 06. i have 3mnts to work threw this .i got my liecinse suspended for the 3 mnts. im going to the doctor today.i'll let you know how it goes. thanks so much for your help.

[toby45]

Very very sorry to hear about this. I've been on Dilantin for about 30 years, also started at 13 yo. and was on 400mg @ night.

I went through the same issue a few years ago and the seizures suddenly began 20 mins after I got out of the car after a 3 hour drive.

I tried several and none seemed to work for me. I tried Sodium Valproate, Tegretol and Topamax, but NONE of them worked as well as Dilantin. So they had me up to 800 mg of Dilantin and slowly brought me down to 500mg.

It's very very important to find a good neuro who can analyze and understand your EEG. Topomax is one of the newer drugs with fewer side effects, if it works for you.
I went through 9 neuro's before I found one who would not try to do dosaging over the phone!!!

So not sure if I answered your q...I wanted to switch, but nothing else works. Long term effects of Dilantin are not good. At 45 I have osteoporosis, possible shrinkage of the cerebellum, some balance issues (which is controlled by Cerebellum) and experiencing memory loss - we're still trying to figure out if this is stress or side effects of Dilantin.

Please speak to your neuro about the long term effects of Dilantin - these are all well known and documented. Hang in there and hope things work out for you. Keep me posted.

Best wishes
Toby