Seizure Medicine

[Jeaneen Andretta]

Hi, i have been having that feeling we all dread, a seizure maybe coming. so i had a blood test and the Dilantin was down to only 9 and it should be around 15. So my doctor has me taking 4 caps one day and three the next, i am feeling better, just every now and than i feel a little light headed. i go for another blood test next week to see how the level is. Love and Blessings to all.  jeaneen

[ejl1558]

Dilantin used to do that to me.  I'd get a low level and they'd up it for a while.  I never felt lightheaded but I remember one time taking three 100 mg instead of three 30 mg and that didn't help.  It's hard bowling in a tournament when you see two sets of pins. :)

 

Ed

[JMO]

It's good that they're monitoring the levels carefully. Dilantin levels aren't linear to dosage increases do a small increase can cause a large change in levels. 
My daughter was on Dilantin for nearly a year and she metabolized it so quickly we were always increasing the dose. Then her level would shoot up to 50! (no joke!) She would get nauseous and stumble around like she was drunk. Poor kiddo. After awhile it just stopped working for her altogether and her seizure count skyrocketed. 

[Jeaneen Andretta]

I have been on Dilantin for 40 years and most of the time it works well, only occasionally it go down. Fortunately it has never gone way high. I heard from others that their doctors talked them into a new med with horrible results. When i was little i kept my seizure disorder from my parents. my mom was dying from Leukemia at the time and felt the last thing she needed was to find this out, of course i did not know i had a seizure disorder, i would just fall on the floor and wake up with bruises all over my shoulders. When i was just married 42 years ago, i had my first seizure in front of people, my poor husband thought i was dying. Took many tests even a egk? and nothing showed, but my doctor put me on Dilantin and no  more seizures. Than in 1999 another doctor decided i should have a MRI and it should brain scarring, so bad that my doctor said it would have been a concussion. Must have happened when i was very young. So Dilantin for good.  I hope your daughter is doing better now.What meds is she on now? Ed, yes, two sets of pins would make bowling and walking for that pretty hard. How are you doing now? Still on Dilantin?

[ejl1558]

I had the left temporal lobectomy in December of 2000 and I've been seizure-free ever since.  I was on three meds and got off of two of them in a year.  I held on to Dilantin because I had been taking it for 30 years but when they told me I had a Vitamin D problem and Dilantin could be causing it, I decided to go off meds all together.  It's been almost six years and I don't miss Dilantin at all.

Jeaneen Andretta said:

Ed, yes, two sets of pins would make bowling and walking for that pretty hard. How are you doing now? Still on Dilantin?

[Jeaneen Andretta]

That is wonderful! My doctor said the operation would just make my scarring worse, glad your operation has made such a great difference in your life. Does this mean you no longer have Epilepsy?

[Nightowl]

I've been taking dilantin for over 40 yrs., and my dose has been between 300-400 mgs. over the yrs. Switches in AED's have caused the level to either go high or low, so when it's low it'll be raised 50 mgs, and when it's high it'll be lowered 50 mgs.

When Pfizer made the changes to dilantin back in '07, it started causing me some trouble. My level is kept around 20, and when I had my level checked in '08, it was at 36.9! The main troubles I was having were sleepiness, low energy, not really interested or concerned about anything, and my balance was out of order. When I closed my eyes while standing, I'd start feeling unbalanced. My body timeclock was in reverse... I'd often sleep a good portion of the day, then be up all night.

I told my neuro. that I hadn't taken my morning dose yet that day, to see what the level would show. She wasn't happy when she saw the level, and told me to just take 100mg. that day, then lower it to 350mg/day. It will probably take 4 days for it to get in order. If lowering it didn't help me feel any better, get another level done. After only taking 100mgs. the day of my appt., I felt my energy starting to return, and my balance improved. The local pharmacies were out of 50 mgs. for 3 days, because it was only available by order. I took 300 mgs the next 2, and it was helpful.

I had the surgery done back in '02, to remove scar tissue form my left temporal lobe, and it's been helpful. I don't understand, why your dr. would say that it would make the scarring worse.

[FighterNC]

Please try to get blood counts done on a regular basis. Have your Neuro. explain what the numbers stand for and where he expects you to be reading. If he says . "a little high" or "a little low" Stop him in his tracks. You, as the patient, need to be told just what these numbers represent. Get a clue what the average clinical dosage is all about and also know what "flagged" and "Toxic" represent.

[ejl1558]

Since it could return and has returned to some people like my cousin, I'll just go with "fully controlled" so I'm covered either way. :)

Jeaneen Andretta said:

That is wonderful! My doctor said the operation would just make my scarring worse, glad your operation has made such a great difference in your life. Does this mean you no longer have Epilepsy?

[Nightowl]

I see I made a mistake in my previous post. I meant to say switches in AED's have caused the dilantin dose to be either higher or lower, rather than levels.. I've been taking dilantin for many yrs. and know what the correct levels are.  I took 300 mgs. with phenobarbital alone for 20 yrs. It stayed at 300 mgs. when I took it along with tegretol and phenobarbital. After I got off tegretol, it was upped to 400 mgs. along with phenobarbital alone. Then it was lowered to 300 mgs as I started felbatol, which I only took for 4 mos. After the 4 mos. it was increased to 400mgs. along with phenobarbital alone again. I took neurontin for 4 mos. the next yr, and it stayed at 400 mgs. When I started lamictal 3 mos. later, it was lowered to 350 mgs. I took it along with lamictal and phenobarbital for 5 yrs. Then it was increased to 400 mgs. when I switched from lamictal to keppra along with phenobarbital.

When I see my neuro., I'm sent to the lab to have my levels checked. If there's a change in my level, my neuro. tells me what the change was, and will ask if I've had any trouble. It's usually only a point in change, which has never caused me trouble. The changes Pfizer made to dilantin, caused trouble for lots of people. That's the first time my level was ever toxic, and I doubt if it'll ever happen again.

[Melody Wenz]

I have had seizures in the past, randomly.  I hadn't had one in 7 years and then in July in the middle of Wal-Mart, I had one.  I was lucky enough to have my husband with me. If it had been 15 minutes later I would of been behind the wheel of the car.  I have been put on Dilantin as well.  My first set of blood work came back 5.9 so it was increased to 3 at night.  Now it has been changed to 3 a day.  100mg capsules.  I will getting blood work done next week, then the following week I see my Neurologist.  This is the appt. to see if I can drive again.  I miss not driving yet I am scared because I have never had any warnings of when I had a seizure.  I am sorry to rattle on, but it's sure is nice to be able to talk to someone who can relate to this.

 

[FighterNC]

Melody, Welcome to the forums. People here are pretty informative about things and I want you to make a careful consideration prior to driving. Please understand that this will be risking the lives of every person in each car you approach on the road. You will also be risking your own life and the lives of any passenger. Should you get into an accident while having a seizure do you have a way to prove you were in a seizure? I know all of us want the freedom to drive & I would love to have it myself. As a person with a medical background I just cannot take that chance. Not driving is a rough situation to deal with but at least my conscience will be clear. The lives of others are not worth rolling the dice to me. BUT this is your decision.