Dilantin

Dilantin (phenytoin) is an anti-epileptic drug, commonly called an anticonvulsant, which works works by slowing impulses in the brain that are likely to cause seizures.

Phenytoin may not treat all types of seizures, or may not treat them well, and your doctor will determine if it is the best medicine for you.

Phenytoin was first created way back in 1908. Yes, 1908. Since the chemist who created it could not figure out what to do with his creation, he sold it and in 1938, the company who bought the drug figured out that it could control seizures. No word on what they did with it in the intervening three decades.

In 1953, the FDA approved the use of Phenytoin for seizure control, and in 2008, it was put on the FDA’s Potential Signals of Serious Risks List – meaning that over the last hundred years or so, they might have missed something, but they are still looking.

It also seems that just about anything can interfere with Dilantin, including antibiotics, antidepressants, aspirin, blood thinners, other seizure medicines and even antacids.

One thing I never saw or heard listed as an interaction – in something like twenty years of taking Dilantin! – was a decongestant. Seriously. Since I had a problem with sinuses, I would happily munch away on Sudafed (or something similar, in the days before pseudoephedrine became known for meth), and wouldn’t you know it, my blood tests would come back with almost no Dilantin? Turns out it was because of the decongestants. You would think someone may have thought of that in all those years.

Regardless, shortly after being prescribed Dilantin, I took as much as 500mg a day for more than twenty years – but since Dilantin (phenytoin) isn’t widely regarded, it was determined that it’s time to move on before something else manifests itself, and so I was weaned off and onto something new – in this case, Zonegran seems like it will be the winner.

As I was decreasing this dose, I did go through a period where I had a serious headache for a while, but it was nothing that a good amount of Ibuprofen couldn’t help with, and once I was switched over to Zonegran – and more importantly, not taking both at the same time – the headaches seemed to stop being an issue on a regular basis.

15 Replies to “Dilantin”

  1. I’ve been taking Dilantin for about 11 years, since I had a seizure after having a brain tumor removed. My dosage has gone up and down depending on my blood level of dilantin, but is now 800mg. / day. This is high, but I do weigh almost 290 pounds and my doc wants my level at 18-23 instead of the usual 10-20, I had a second seizure once when the level dropped to about 8.5.. No bad dreams, but sometimes do feel like I’m in a fog. However, since it is working I’m not complaining. The seizures weren’t too bad, but not being able to drive for 6 months was far worse.

  2. I had headaches pretty regularly while on Dilantin – but I can’t tell you exactly when they started (I was on Dilantin for 20 years or so).

    Now that I’m on Zonegran, I have headaches far less often, but I still get them. So it could just be me.

  3. Hi
    I have been on dilantin for about 3 months now. Can anyone tell me if they had headaches while on it. It seems that now I have headaches everyday. I would appreacate any help thanks

  4. Hi Trisha – Yes, I am completely off of Dilantin. I haven’t had any since April of last year. I am currently taking Zonegran instead.

    I took Dilantin for about twenty years.

    I can’t say exactly how long it takes it to get completely out of your system, but for me it took about six weeks to completely wean off of Dilantin and onto Zonegran. However, this wasn’t completely cold turkey, and I was ramping up the Zonegran at the same time. If you completely stopped taking Dilantin, it would probably get out of your system much faster.

    As to stopping taking it, that’s not something I can advise. Only you (and your doctor) can make that call. If your head has had some sort of trauma to induce you to seizures, then the Dilantin will likely be helpful to keep you from having seizures. Stopping the medication will perhaps lead you to having more.

    For me, it was worth continuing to take the medication rather than risking it. It sounds like you’re not interested in taking the medication. I’d talk to a doctor rather than trying to stop taking it. If you were to have a seizure at an inopportune time, you may not be happy with the results.

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