[dave80909]

H i

I've has this "seizure disorder" for about 30 years and im still
having problems once in awhile. I want help from someone that
knows what there talking about, please!!

I've been toxic before, but with my resent spinal fusion and
all the drugs im on i didnt notice...I was getting leg weakness
and started falling over, I went back to using a walker and still
fell over flat on my face and broke my nose. Finaly I get into see
the neuro doc and after mulling all kinds of things over he says
"Uhuuuhhhmm...maybe we should test your dilantin level, this is a
sympom of toxicity". The dim flickering light went off in my head at
that moment and I realized he was probably right. I go into the lab
and a few hours later get a call and the level was at 51.3 OMFG !11

Every time I've tried to detox at high levels I end up seizing..theis
doctors dont know what there doing half the time and are just too
busy to really care. This time ive taken charge of this situation because
I'm really tired of going to the ER and ending up with astromical ambulance
fees etc.

So in conjunction with the doctor I have gotten standing orders at a hopt.
lab for testing. The doctor says "stop taking it for 3 days" well bull ****..
Ive heard this before and ended up in the ER again with 0 level dilantin.
I told the nurse on the phone..no I gotta taper off this time, and I cut
my dose in half (I take 800mg generic) and a couple days ago it was at
30...now the fog is lifting and i can almost think again...the thing is I don't
think dilantin levels always decrease on a sine curve they can sink like a stone
in no time flat.

Today I'm waiting for my resluts from yesterdays test, they still havn't called
which is good news becaause they would have if it was bad, but last night
I started getting twitches and i didn't like that, i took two extra.

What I'm wondering about is this seems to be the critical time were the level
is ok, so i think i better start loading back up or im in big trouble because
for some reason I can shed the drug at this point really easy. Also being
toxic the body has become used to that level and now you could have a break through seizure on normal levels. Does this sound right ??
I'm I doing the right thing? It's nice to be able to walk again and think.
However I'm really tired of this crap..I'm 48 and have a neck fusion if
I have a seizure i could die. Is anyone here really really experienced with
this. Maybe a 20 year charge nurse or someting ? LOL.. no doctors please
your all idiots.

Dave

[shezbut]

Hi Dave,

(((hugs))) to you!

I have a refractory partial seizure disorder. I was put on dilantin when first diagnosed (12 yrs ago). After a year or so, I began losing sensation in my toes. Then my feet. It went on for about a year, before I finally got my neurologist to take me off dilantin. Thankfully, after a few weeks or so, I got feeling back in the extremities.

Since then, I've been on many medications. I've been on phenobarbital for 8 years now. My dosage kept being increased, to try to gain control of my seizures. I was at 180 mg's for a long time (which is almost twice "normal" dosage) before being sent to an epileptologist - a neurologist who spent additional years focusing on seizure disorders & treatment.

The epileptologist tried several times to get me off the phenobarbital. Very slow titration. No luck! My body is dependent upon the phenobarbital. When I don't have it, seizures increase and worsen. I had surgery in hopes of finally gaining control of my seizures and get off the phenobarbital 3/06. After 6 months of recovery, I was finally able to get down to 90 mg's successfully. I remained seizure-free and didn't have dependency issues rise as I was coming down.

A fall upon the ice 3/07 turned it around again. I fell on my head - causing intracraneal hemorrhage. Seizures came back, and I slowly went back up to 180 mg's. My condition is once again refractory. I work with the same epileptologist. I'm extremely hesitant to ever to a neurologist for my E again!

As you can see, I understand exactly where you are. I highly recommend seeing an epileptologist to get your dilantin levels under control more quickly and safely. You're welcome to PM me if you have any additional q's.

Best wishes and hugs to you!!
Shez

[Porkette]

Hi Dave,
I've taken Dilantin in the past for absence (petit mal) and complex partial seizures. The drug didn't work that good for me but I've been on other AED'S like tegretol, that have become toxic on me do to the fact that my Dr. had me on antibiotics that increased the drug level of the tegretol. What you are describing sounds like it's toxic I know the last time my AED's were toxic I had to cut back on the meds and I was in bed four days with poison in my system thanks to the Dr. My advice to you is to go to an Epilepsy Center and see an Epileptologists who specializes in epilepsy. They have always had me on fewer AED's. Also try taking vitamin B or vitamin B12 I've found taking vitamin B12 helps reduce my seizures and it gives me more energy. Here's wishing you well and May God Bless You!

Sue

[dave80909]

Glad You answered. I like your ideas, a apecialist would probably be better
than a neuro. Perhaps in the future i will seek one out. Right now I have
3 docs, a GP, a nuero, amd a PT doc. I just really dont want to throw
another one into the mix, its bad enough as it is. The B12 is great idea
I'm using it now too.

I have grand mal seizures, and it was a seizure that fractured my neck.
I think the drug interaction might be a cause, this cropped up about
the same time I started nuerontin for my mylopapthy. For some reason
somethimg changed the way i was aborbing this drug beacuase everything
has been stable for years. i got so many issues with my 4 level neck
fusion, pain drugs, hospitals, doctors, this. When will my pain be
over ?? Sorry to cry, just put a bucket under me.

[SandyC]

My mom had the same problem only hers was dropping fast and she was having seizures. Up the dose, down the dose. She dropped her old neuro and found a new one who put her on a lower dose of dilantin and added keppra to control the seizures better. She's finally out of the fog.

I hope they find a good seizure cocktail for you too.

[shezbut]

I agree with Porkette. I know that seeing an epileptologist at an Epilepsy Treatment Center can feel overwhelming when you're fighting other conditions. However, health issues often become complicated by epilepsy & treatment medicine/s. The more medicines you take, the more confusing it becomes .

I got lucky in that my second neurologist told me that he could not help me gain control of my seizures. He admitted that he was simply at a loss - didn't have enough experience with epilepsy to be able to treat me. My neurologist was a good doctor and a decent human being. Many doctors are unwilling to admit that they don't have the answer, or that they cannot help. My neurologist recommended that I go to Mayo Clinic or Stanford, to see an epileptologist for treatment. I followed his advice and went to Mayo Clinic (which is pretty convenient now that I live so close ). That is when I found out that my phenobarbital dosage and dependence is considerably high.

Hugs to you Dave - I hope that your pain eases soon !!
Shez

[Koala77]

Hi there Dave, I cannot answer your questions but I wish I could.

We do have a member here named mrsD who helps us out with all types of medication type questions and although she's not on line right now, if you were to post your question under the Medication Forum, I'm sure she'd get back to you just as soon as she can.

[Porkette]

Hi Dave,
I've had epilepsy for 37 yrs. now and after seeing many different neuros I finally went to a university hospital and saw and Epileptologist (epi) who works together with a neurophycologist and neurosurgeon the 3 of them work together as a team. I have 2 cousin who had broken necks and were paralyzed thanks to a drunk driver so I can relate to what you are going through. One thing that concerns me is the neurontin, a few yrs. ago I was put on it for pain after I had a concussion but the drug caused me to have absence status sz. where I would be out of it for 40 min. to 3 hrs. if you have noticed that your sz. have gotten more servere you might want to get off the drug. I know that NBC Dateline had a show a few yrs. ago about the drug and how there was over $210 million in lawsuits because the drug was only approved for epilepsy but they were doing off market labeling with the drug, the drug caused sz. for people who never had sz. in there life, and 72 people ended there life while on the drug. My family Dr. put me on the drug and when I went to see my epi for a check up he took me off the drug immediately telling me it was worthless. I know if you go to an Epilepsy Center you can also see a neurosurgeon who can help you with your neck. Also cut back on the nutra sweet if you use it because that has been proven to trigger sz. for many people. Here's wishing you well and May God Bless You!

Sue