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    First timer here--question about Dilantin dose and side effects
    Calvin_and_Hobbes_Fan posted:
    Glad to have found this virtual community! It's informative and reassuring on many levels. I'm not sure what the etiquette is here (details, length, etc.), but here is my story and question.

    A couple of days after hitting my head I had a major seizure; I was put on Dilantin and have some continuing side effects. I won't bore you with details, but I have some short-term memory issues, occasional language problems (e.g., word substitutions when speaking), vivid dreams that wake me up, sore gums, and neuropathy and pain in the feet. These are all new symptoms for me.

    I've seen two neurologists. The only side effects of Dilantin they seem to recognize are strabismus, speech slurring, and staggering. Only if those are pronounced, do they think action is necessary and then they advocate switching drugs. It's as if the drug acted via a threshold—all or nothing. It controls seizures and you have to live with the side effects; otherwise you should switch drugs. If the blood level of Dilantin is between 10 and 20 (preferably on the higher side), and you're not having seizures, then the dosage is fine.

    That doesn't make sense to me. I would think that a reduced dose could still control seizures and yet reduce side effects. But I'm not a doctor or a scientist.

    My blood level of Dilantin has been fluctuating between 15 and 22. I'd like to see what would happen to the side effects if it were more like 10-15. (OTOH, I certainly don't want to risk another seizure or put my family through that again.)

    So, here is my question:

    1. Did any of your neurologists sanction a dose reduction to control side effects—or did you have to switch drugs?

    And, for the resident neurologist,

    2. Does Dilantin work in an all-or-nothing fashion?

    3. Have there been any controlled studies investigating Dilantin dose reductions and changes in side effects?

    I'd like to give my neurologist and internist some research. Or, at least, some authoritative or anecdotal opinion that backs carefully monitored dose reduction.

    Thank you, all!

    dancer86442 responded:

    I am a Resident of Epland. But, not a DR. Welcome to our 'community', sometimes just a 'neighbor or block party'. But, definitely extended family & Friends. Our DR joined us last Yr, but, we haven't heard from him in Mths. But, I think I can Help. Your questions are not new to me. In fact we got something in common. A blow to the Head. It re-triggered seizures that had been in Remission for over 20 Yrs.

    I like your Member ID, but, do you have a shorter Name?

    My Opinion about your med: IT SUCKS! It never did control my seizures & I was a total Zombie & was told I acted/talked like I was drunk most times. Although some PPL have tolerated it cuz of control and after 6 weeks their systems adjusted. Each of us Responds in our own way to our medications/doses. Almost All go thru the 'trial & error" of finding a med that not only works, but doesn't interfere w/ Quality of Life. Yes, it makes sense to Lower your Dose. But, even That is 'trial & error'. One of the things we Have to remember is to be our own Best Advocate. Insist on Lowering your dose as a Trial! Give it 4-6 weeks. Quality of Life is Very Important, too. You should not have to Live w/ unbearable side effects.

    Memory Issues? Well, that is an either/or. Epilepsy or meds can affect Memory. And Lowering or getting off that med is the only way your gonna know which is which.

    Answer to your 1st ? I went thru 5 meds. They were either upped or Dumped. My Final Drug, Phenobarbitol, (Older then Dilantin ), was only lowered when I got PG. After my son was born, it was raised to Max dose, again, due to Hormone changes triggering episodes, I think. My side effects are mild compared to previous meds & I have been on Phenos over 20 Yrs, w/ 'breakthru seizures' being Very Rare.

    Another opinion: If your Family has noticed these symptoms, I would think they would Want you to try something else. As long as they know what to watch for & how to respond. 4-6 weeks ain't that long. And I realize Seizures are scary to watch, but, all they need to do is follow proper seizure 1st Aid & you will most likely just sleep it off. The only time they need to worry or call 911 is if you Hurt yourself 'crashing' or the seizure is Non-stop for 10-20 min. Although I did just read "anything over 3 min is Now recommended". Any way, if your like Most, you don't know/feel nothing till the Aftermath of a seizure. But, again, You know your system best. I think You need to be the One to decide.

    Want the Latest Info on your med. Want to know what Long Term Use can do to Some? Call or go see your Pharmacist. They Know. They will have an answer. Also, visit

    For Reviews on Dilantin. Use WebMD's Drugs & Supplements above in blue. BTW: I do know you need to Increase your Calcium intake on this med. Preferably Calcium based Foods as supplements have been determined to have bad Side effects, too.

    Also, Start a Journal. Use It as a Tool when Dealing w/ your DRS. It will be Very helpful. More Info under Tips.

    Now keep in Mind: DRS Cannot determine How you or Anyone will react to Any Med or Dose. Do your Research (homework) on any recommended Drug. Don't be scared to try them, (if needed) just know what you need to watch for.

    Got more Questions/concerns. I'll be here. Whenever Life Ain't Interfering.

    Love Candi
    Haylen_WebMD_Staff responded:
    Hi Calvin and Hobbes Fan -

    I'm the new WebMD board moderator and wanted to chime in because I, too, am a Calvin and Hobbes fan. And I wanted to welcome you.

    Candi - thanks for the great insight and information.

    Additional info (user comments about the side effects, benefits, and effectiveness of dilantin) can be found here:

    dancer86442 replied to Haylen_WebMD_Staff's response:
    Thank You Haylen,

    Your input is welcome anytime. Hope ya had a Good Day.

    Love Candi
    ramnlam responded:
    Hi: I has a lot of side efects from several diffrent drugs and dilantin was one of them. I couldn't try to reduce the meds because I just kept having seizs. This med was the first one I was on and it didn't do anything for me except make me dizzy, confused, tired, gave me really bad head achs and a few others. I just called my Dr. after trying it for 2 weeks and told her to change it or I would find a Dr. who would. In all reality nothing did away with my seiz. but lamictal helped the most, until I had the part of my brain removed that they were comming from. I wouldn't recomend reducing your meds. Try something else. I take 1000 mg of my drug every day as a precaution, via the dr. and I never intend to stop. I really don't care if it was the surgery or the drug that cured me I am just happy I am still here.
    Calvin_and_Hobbes_Fan replied to ramnlam's response:
    Thanks much for the welcome and information! And support.

    Sorry for the lag in getting back to you-- I can't blame that on Dilantin side effects! I thought the forum would notify me automatically when any reply showed up. (I'll have to check my user settings. Oh, wait! I just noticed a checkbox at the bottom.)

    The Dilantin has worked fine (no follow up seizures), but it's something akin to the old saw about someone who whistles to keep away the elephants.

    Person 1: "Why are you whistling?"

    P2: "To keep away the elephants."

    P1: "That's silly, there are no elephants around here."

    P2: "See! It's working!"

    It's unclear what would have happened in the absence of Dilantin (or a lower dose)!

    I think you're right about individual advocacy (I will be more forceful on my next visit), but it would still be good to have a peer-reviewed study to show them. Any ideas about that?
    dancer86442 replied to Calvin_and_Hobbes_Fan's response:
    Hi, Calvin & Hobbes,

    Although the majority of the Reviews found on Drug page are 'Old' A few had the same symptoms as you. No mention of lowering the drug, though. I assume ya read the Reviews.? If You took that peer-reviewed study to your DRS, they will say: "See told ya so"

    Personally, It's always been "Side effects? Change Meds!" Opinion, from my DRS. I, too, figure your side effects warrant a change in meds, Not a Decrease.

    Love Candi
    ewolfe314 responded:
    Hi Calvin,

    I am by far not a Dr. but I was first put on Dilantin And Phenobarbital.

    The Dilantin expierience was horrible for me for 20 years. I had break through seizures all the time. I first started out at 500mg per day. My family Dr.'s raised them to 700mgs per day.

    I was a walking mess as my dilantin levels went up and down, my first nuero doctor when I went to visit him about my walking problems stated that I was going through Dilantin Toxicity. My dilantin level was 26, well above what it should have been. He monitored my dilantin levels for 4 straight days to get it down to normal. Then went back to the normal 500mg per day.

    Just over the past few years,my dilantin levels bottomed out to a reading of 6 and then zero. My old nuero retired and had to find another and he got me off of it and changed me over to keppra,3000 mg per day with 180 pheno' s per day and I am just getting use to it. I am on week24 of keppra and feeling a lot better then being on dilantin.

    Dilantin wears away your bones after years of use and now I have to take Calcium tablets to help prevent further bone loss.

    1. Neurologists can lower it but it's up to them by reading your blood levels. Never take the advice of a family Dr.

    2. Diantin does work to a point but remember the long term effects of this drug are not good at all,IMO.

    3. Can't answer this one for you but I do know that if there are reductions in a dosage there sure are going to be side effects,such as seizure activity being more pronounced.
    tammyhiles responded:
    Constipation, abdominal pain, tiredness, dizziness, nausea, vomiting, and loss of appetite are some of the side effects of Phenytoin
    anthonybrownii replied to Calvin_and_Hobbes_Fan's response:
    The journal is the best idea for you because you can keep it weekly like a conversation with those you interact daily with. My visit to E.R.on 4/16/2014 for sz's has caused a change in my meds from my Family Dr. treatment of other ailments to the removal of Trileptal Oral for it's interactions with every med I take including my primary sz med of KLonopin name brand only. I was on Dilantin as a child and it produced mood altering affects this was proven after I was off meds for 6yr's. I wasn't cured of Epilepsy they just missed the Petit Mal's because they were busy treating my Gran Mal's so upon putting me back on meds they started me with Dilantin and I became angry easily where as before I was normal response to issues. This is when I began what many here call the med merry go round. That is when Dr.'s prescribe and you find out what you can tolerate and not. Don't be suprised that name brand is what the EFA suggest as the med not generic because it can cause a different response and side effect than the other . My last visit I wrote a letter utilizing my journal to explain to my doctor what I would've forgotten it helped us discuss and change things.
    anthonybrownii replied to ewolfe314's response:
    You were on the same mix I was on as a child I am now on Klonopin and just removed from Trileptal. Dilantin made my gums swollen and caused other dental not to mention all of them if they were listed I had them let's put it that way. The Trileptal left me with many interactions than solutions since it's removal I have not been able to see my Nuero but my back pain is gone and many other side effects have deminished since.
    meesher6 responded:
    Dilantin is known to rot your gums by overgrowth of them--so I started brushing my gums 5 times a day. Rather than causing gum rot, what happened was that 6 of my very lovely teeth turned dark grey at the gum-line, so I had to pay for dental removals and then implants. On a rare occasion, I seized and was taken to the local U of California ER room where an ER doc gave me a drug that had only been FDA approved by the FDA since 2000. (Zonisamide) And it stopped my grand mals, my petit mals, my absence seizures, ALL KINDS of seizure activities. My memory, which had turned into goo, came back (over 6 months) but I'm now too old to start practicing law, which is what I went to school for. I am suing the doctor for medical malpractice for failure to prescribe this med which works. In 11 years I think that doc had more than enough time to try all 15 of the currently available AEDs. Damn, I want to HIT HIM UPSIDE THE HEAD! (but I'll settle for money)
    dancer86442 replied to meesher6's response:
    Hello meesher,

    Hate to say this, but, I don't think you have a leg to stand on to win your case. Our Epilepsy Drs have no clue What will work for Any Individual. Or How it will affect them! All our 'treatments': meds, diets, surgery, alternatives are 'trial & error'.

    IF you Do win your case, please let me know & send me Info as to How you won the case. Cuz, it took me over 10 yrs b4 being placed on a med that worked for me. And it is the Oldest med out there. Phenobarbital. Dilantin was the First med they gave me. But, the Dr neglected to tell me that I would Have to take it for the rest of my Life. I thought I was 'cured' after the first Month & did not refill the script. When I restarted treatment a yr later, I went thru at least 5 or 6 meds w/ I don't know How Many increased doses.

    I am Happy to hear that a Dr Did find a med that worked for you. Although it is Very Rare that an ER Dr would do that. Most times, the ER does Nothing, except, maybe, to get seizures under control w/ Rescue meds & then send you Home w/ a Referral to a Neuro. You were Fortunate that that wasn't the case for You!

    Here is Hoping you remain seizure free. Best of Luck & Lots of Hugs!

    Love Candi
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