Has anyone ever had their dilantin level go up quickly?

Hi @jdwandmew
I can very well understand your fears. If you feel insecure about your doctor's procedure, I would check for a second opinion. Best if it could be done with an epileptologist.
Take care!
Chris (or Santosha)

@jdwandmew I have been on Dilantin since 1972 and over 51 years, never had spikes. In fact, I have trouble maintaining the level 10 which is where my doc would prefer me to be. My level is checked twice a year. My norm is about 7.5 to 9 and the doc said that this level is holding me. Might not be a bad idea to make a visit to your pharmacist and see if any meds and supplements you are taking would cause the Dilantin level to go up as it did. I think they may offer an opinion. Meanwhile, I understand and can appreciate your concern in lowering dosage. I'd start with the pharmacist. Good ljuck.

Thank you. I'll be making an appointment with a neurologist. I'm kind of far away from anyone with a subspecialty but appreciate the info.

Good idea. You'd think my doctor would see that first. Thank you.

Hi @jdwandmew
Today we thankfully have technology that shortens distances. If you are far away from doctors specialized in epilepsy (epileptologists), you can schedule an online consultation. Many doctors do today work with this possibility.
Chris (Santosha)

One time, my blood pressure was unusually high. Primary doc asked if I was taking anything new, I said Mucinex...she said that'll do it. So, you never know what meds or supplements interfere with prescription meds that we need to take. Good luck with the pharmacist.

I'll keep that in mind😊

Make sure you receive Dilantin and not a generic version. I was on Dilantin for a long period of time. The Dr. changed me to a generic. My blood levels dropped dramatically and had 3 grand mall seizures within a 4-hr. time frame. I went to the emergency room where they gave me Dilantin thru an IV solution. To make sure you receive Dilantin, have the Dr. put on the prescription script, Brand name Medically necessary. I was on 700 milligrams daily 200mg morning, 200mg afternoon, 300mg. at night. At that dose I had at times unexplained nose bleeds. I eventually got off it and have been on Keppra and Lamictal since.

@jdwandmew
When my Dilantin became toxic my Neurologist said it had become unstable. I understand this isn't common and wonder if it occured because Dilantin is a nonlinear drug.
We tried every conceivable dosage and ways of taking it but it remained toxic.
I was told our only option was to switch medication. He changed me to Carbitrol, a brand name, extended release version of Carbamazepine.
My Neurologist insisted seizure patients take brand-name Anticonvulsants.
I wouldn't let your Dilantin remain high. Tell the Neurologist about your seizure-free status and you don't want to jeopardize it and insist on more frequent blood level tests.
At one point I was being tested daily.
Sometimes aging is a factor.
I would do whatever it takes to get your meds to a more.
acceptable level.
How's your level now?
Take care,
Jake

It's at 25 and I'll be re-tested in 3 weeks. Problem with brand name is my insurance won't pay if there is a generic and I sure can't afford the brand name