[dave80909]

forgive me for spelling ect. im awful at it. It's 12:30 am and tired but
I saw this forum and want input on this. Through the years I've had
a lot of difficuly getting my level right, but dilantin has worked to
control my siezures very well, but I must maintain a certain level in
my blood for it to work. I get it tested and maintain the right range


1st my insurance co. insisted on generic, so I switched, that resulted
in a seizure because my level was low, so I increased it. I was doing
good on 4 x 100mg of the trade, but generic didnt do for me..so up
to 8 x 100mg finnaly worked and that worked for years and still does.

My doc told me that generic can have up to 20 percent difference
in it, plus the inert ingiedents are different and it can be absorbed
differently. This amazes me that in such a critical drug like this and
others can have this difference. Impending surgery awaited me
and I had my level checked was in the good range

In my case proof came to me when I was in the hospital
and given the same dose of trade. I made them check my
level before my release, it was 29.5....I was toxic. Twice
the acceptable level.

I'll finish this later ..i'm too tired...but Id love to hear any of
peoples thoughts or expiriances.

[Sissylou]

Hi, Dave,

I have always only used brand name AEDs. For some reason, a few months back, I was given the generic version of Dilantin. I don't remember why as my seizures have been really bad over the last year or so. I imagine the reason was that my husband had been laid off from Dell Computer and we were having to find ways to afford meds.

Anyway, I had multiple grand mals.
I contacted the drug companies and requested help getting my meds during this time. The makers of my Lamictal, GlaxoSmithKline, Boniva, Rouche, and Celexa, Forset Pharmaceuticals, agreed to help me. I am very grateful to them.

I have taken Dilantin since I was 7 years old. I consider myself, "Job security" for the manufacturer!!

Unfortunately, the makers of Dilantin, Phizer, rejected my request and would not help me with my meds during this time. You do not mess with my Dilantin or I will seize. I was very disappointed with the company as I just needed a little help until he got another job.

Usually, if your doctor says, "Brand Name necessary," on the prescription, the insurance company will cover the drug. Check and see if that will work for you. I had this problem before and found that the insurance company HAD to respect this point and they covered the medication.


Be careful,
Sissylou

[dave80909]

Hi sissy

Be careful is more than just advice...it's my way of life now.
I have found i get along fine with the generic...I just had to
take a lot more of it to get my level right. I had several seizures
until I finnaly got my blood level of it right.

It's different for eveybody, how the drugs work, and getting
our formula just right is the hardest part of siezure control.
It can take years as it did for me. I finnaly got my blood
level right, got a pill case, and take them religiously, or I
sieze.

My problems occure when that blood level is messed with.
I took the brand name for years until my insurance co.
insisted I take the generic. It wasn't the first time, every
time my insurance chaged I went through this, I gave up.
I took the same amount as trade...seized..upped it again,
tested the level, seized...on and on it went.

Finnaly I got it right and had it controled for years. When
I went into the hospital I just didn't realize that the difference
was so much for me and took the brand name. Next time if
I"m admitted...I'll take my own meds and pill case, I don't
care what they say, this is too critical, i'll walk out if nessesary.

Those people don't understand what we went through to get our
formula right. They dont understand what it's like to wake up in
the ER with a thousand doller medical bill, or in my case a horrible
injury...they caused.

Talking to several medical pro's, this is no big secret. I was dissapointed
that my Nuerosuregon and the hospital seemed to have no reguard
for either the medication differance or my blood level in the matter.

I would like to warn anyone reading this, if you switch your medicine,
even from brand name to generic, be awful careful. Test your levels
make sure your in the good level range and not too low, or toxic.
I have been both, either is really horrible.

[Porkette]

Hi Dave,
Welcome to the forum! I've had absence (petit mal) complex partial, and aura (simple partial) sz. for 37 yrs. now. I have been on both brand name drugs and generic. I've found that the generic drugs aren't as strong for me so my neuro gives me the brand name drugs. I've been on at least 13 different seizure meds (AED's) and then I had a DNA blood test to find out that I was drug resistant. You might want to have your neuro to a DNA blood test on you to find out what would be the best AED and drug level for you with the least side effects. I've found going to an Epilepsy Center at a University hospital the best thing I've ever done. I see an Epileptologist, neurosurgeon, and neurophycologists these Drs. work together as a team and found that I was able to have brain surgery to help reduce my seizures and I've found them way ahead of all the neuros. I've seen over the yrs. Take note and if you have a cold or a virus of some type where you are taking over the counter meds. it can mess up your drug level with your AED's because the over the counter meds will sometimes make the AED's go more slowly through the bloodstream and that can lead to sz. I wish you the best of luck and May God Bless You!

Sue