DILANTIN Reviews (PHENYTOIN SODIUM)

Average Rating: 3.5 (185 Ratings)

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 ANTICONVULSANTS

 Type: Rx Drug

  

DILANTIN  (PHENYTOIN SODIUM):  Phenytoin is used to prevent and control seizures (also called an anticonvulsant or antiepileptic drug). It works by reducing the spread of seizure activity in the brain.    (Sources: U.S. Centers for Medicare Services, FDA)

  

Results are sorted by Gender with females listed first (reviews with no gender reported listed before females).

Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)

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More on DILANTIN: Reviews Summary  |  Drug Safety Information

RATING  REASONSIDE EFFECTS FOR DILANTINCOMMENTSSEXAGEDURATION/
DOSAGE
DATE ADDED
 
 5  Seizures It gives me energy and helps me lose weight I've never had a problem with this medicine as long as I've been taking it I've been taking it since I was 3 years old 42 1 days
300mg
9/28/2016
 3  Partial complex seizures TLE I’ve been taking Dilantin for about 1 and 1/2 years now, and for me the side-effects have included making my teeth more brittle. Also, I have small patches on my skin and scalp that are red and both itchy and sore. I’ve started supplementing my 300 mg/day of Dilantin with CBD oil in nasal spray form. The CBD oil has been wonderful at relieving both stress and depression. I still have occasional seizures, one or two every few months. As much as I dislike the seizures and the control they have on my life, no license, memory loss etc, I can live with the occasional seizure on Dilantin rather than the side effects I experienced on other anti-seizure meds. I do worry about my teeth breaking, as I’ve broken two teeth since I’ve been on Dilantin. But then when I seize, I fall and my head and teeth get compromised. 56 20 months
300 MG
12/16/2019
Email
 1   Dilantin Linked to Stevens Johnson Syndrome
6/30/2006
 5  epilepsy None Has anyone else experienced breakthrough seizures while on Mylan's generic version? Have you contacted Mylan or FDA about this? Contacted an attorney? F 28 10 years
3/21/2007
Email
 5  drug reaction siezures I had a seizure 10 yrs ago and no cause was really confirmed; it was either lack of sleep or sulfur based drug. A few months ago I had a massive seizure, actually two, the second being caused when the doc took me off of oxygen for a c-scan. I found out that a few days earlier I'd been given a drug that I never should have been given. Ultram 50 is known to cause seizures and overdosing on it also increases it. The recommended dose for the 1st 3 days is only 25mg per day. Not really a memory loss, more of searching for the right name of something. I have tingling in my hands but I had some of that before drug due to pressure put on arm by leaning it on chair arm or desk top. I've noticed some problems with staying stable while walking. I found out buy taking does in smaller amount worked. I was given (by a licensed doc)100mg, every 4 hours. I trusted the doctor; I was just told it was a pain reliever like naprosin. When they did my EEG my whole head was full of seizure activity, not just Not really a memory loss, more of searching for the right name of something. I have tingling in my hands but I had some of that before drug due to pressure put on arm by leaning it on chair arm or desk top. I've noticed some problems with staying stable while walking. I found out buy taking does in smaller amount worked. I normally take 300mg in the morning and 400 at night, when I had this problem I'd spread it out 200mg at a time to equal 700 a day. Now that part is fine. F 52 4 months
12/12/2006
Email
 5  uncontrolled seizures Wow- first drug I've had NONE. I'm pretty sure the teeth thing is coming as everybody gets it sooner or later and my dentist said "oh, you started dilantin- you're teeth are gonna be shot" but so far so good. =) I also take topamax and lamictal. My dose is 100mg in the morning and 200 mg in the evening. I weigh 103 lbs. My blood level sits at about 17 on average. Topamax stopped my 'big' seizures. Lamictal slowed my partial complex seizures to 3-4 per month. VNS didn't do anything at all (getting it removed soon) Dilantin- is doing great! No real side effects so far, and I've only had 1 - 2 partial complex a month since starting it and every once and awhile had NONE! coooool =D F 28 1 years
11/10/2006
 5  Temporal Lobe Epilepsy Vertigo, numbness in feet, memory loss, depression, bad gums,ticks, hands shake, lack of concentration. Dilantin with phenobarbital has kept me virtually seizure free. I have been able to lead a completely normal life. The only time the medicine didn't work was while I was pregnant, so I had a tubal ligation to prevent harm to my son. In recent months the side effects started to show up and a blood level test showed that I had overdosed on Dilantin. Until now, I did not know of any side effects except for the gum problem. F 57 43 years
8/30/2006
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 5  epilepsy My side effects are very minimal - no changes in hair, no gum changes. Fatigue,depression - but I never related these to dilantin. Memory loss and eye-to-hand coordination problems in last five years - but i AM over 50, and these things happen with age! I'm so glad its there. It contols my nigthtime grandmal seizures. I taken Lamictal for partial complex seizures (lapses of consciousness,inabilty focus/speak clearly)- that drug is a wonder also. Have had to increase doses over the years. F 52 19 years
2/26/2007
 5  Grand Mal Moody and shaky as in motor skills. And a couple of much tolerable side effects. Was safe on this dosage for all this time.25 years. AFTER 25 years, All of a sudden had seizures and could not be left alone, had seizures to point of comeing out of them and not at all "knowing" I had lost conscienceness until later that day. Of course stopped driving all together. Was treated after MRIs and EEGs with Keppra and I did not respond to this at all. Unable to even be trusted to walk outdoors and cried as the episodes/ much pain continued. Was then given dilantin again but increased the dosage to 200mg twice a day. It has now been almost one year and a half, and can now hold my grandchild. I do have poor bone density but am treated for this. Praise the Lord. F 55 25 years
100 mg 3X day
6/10/2010
 5  epilepsy some trouble gums but brush 3 times day gums are good ..sometimes feel little tired thank god they found a drug helped me dilantin in great F 25 15 years
500 mg 1X O
8/17/2011
Email
 5  Seizures (due to TBI) As time has passed (16 yrs) on Dilantin I have had an increase in numbness and tingling in legs and feet. Neuro doc says it's from long term Dilantin use. I am currently in menopause as of around May 2005. It was around this time that I started having problems with keeping a steady lvl. It either is in the toxic range or bottomed out...no happy medium. As a result of this I have spent close to 3 months in hospital with half of that in ICU on a vent. I am extremely curious as to whether there has been any sort of study done on the effects of menopause and Dilantin effeciancy. This drug has been a wonder drug for me for many, many years. F 47 16 years
3/13/2006
Email
 5  complex-partial seizures Initial unsteadiness on feet and appetite suppression. I found it very important to take a vitamin B complex supplement to control the fatigue and depression that long-term use caused. Even after a temporal lobectomy Dilantin is the only drug that controls seizures and has bearable side-effects. F 47 15 years
1/6/2006
 5  seizure disorder I have taken 300 mg of Dilantin nightly for 36 years and been seizure free except for 1 seizure in the hospital after the birth of my first child; (I wasn't taking the Dilantin properly at the time because of my concerns about its possible effects on the baby...there were none.)I have had surgery on my upper gums twice in the past 12 years which was virtually painless thanks to my wonderful periodontist. I have short term memory problems and have recently started to have occasional tingling in my arms and hands. My neurologist has mentioned other, newer drugs that I could switch to but my attitude has been "if its not broken, don't fix it!" I also have refused to switch to the generic form of Dilantin despite having to pay more for the brand name.I believe I've lived a completely normal life thanks to this drug. F 54 36 years
1/30/2009
 5  seizures Only side effect seems to be growths on my skin especially on my face. I have been on Dilantin for 32 years! Tried others but others caused bad side effects. F 50 32 years
8/16/2008
Email
 5  grand-mal seizure Totally lost my sense of balance, slow growths in mouth may eventually take over where my tongue is supposed to be, bone density is "compromised." Only had two break-through seizures -- once when I forgot medicine for three days (teenager!) and once during reduced dose after pregnancy. Yes, I went through two pregnancies and nursing for months afterward while on 2mg of dilantin. Hard to attribute some things to side-effect of medicine -- but very easy to note that seizures are gone! F 60 43 years
9/14/2008
 5  unexplained tonic-clonic seizures swollen gums Dilantin has been great but I am now worried about possible long-term effects. My Dr. wants me to switch to Lamictal. I am worried because I have been seizure-free for so long and haven't had problems other than my gums. But I am concerned about cerebellar atrophy. Has anyone else switched medications and been successful? F 37 22 years
4/14/2009
Email
 5  Epilepsy--53 years Actually taking dilantin 53 years. Only side effect is depression and low energy. Otherwise, am very active--dance, walk, fitness, multitasking for years. Found taking 400mg daily was too much. Alternated 400 and 300 daily. F 63 10 years
300-400 mg
10/15/2016
 5  I am taking 100 mg for seziure I feel tingling I in my head and down my neck and down into my back. I take 100 mg of dilantin 3 times a day. I have grandma seizures and I just feel sometimes I am still going to have a seziure and my ears ring and my stomach hurts then I feel like throwing up. F 25 3 times
100
12/25/2015
Email
 5  grand mal seizures I was put on 300 mg of Dilantin at age 16 for seizures but after a week or so, it was reduced to 200 mg when I exhibited toxicity to it. I have osteopenia but so did my mother, and two of my sisters so I can not say that Dilantin has caused it. According to an MRI done at Mayo in Rochester, I have moderate cerebral shrinkage. This accounts for some of my unsteadiness at times and I realize this is a side effect of Dilantin. However at age 65, many people have an unsteady gait so I again can not say that Dilantin did that to me. I do not have any gum overgrowth. I have some elevation in my ALK Phosphatase count but not enough that my neuro is concerned about it. At the age of 16, I felt my life was over when I started having seizures. Dilantin gave me my life back so that I could function normally and I married and had two sons. No one ever told me of the side effects until after my second son was born and thank God that both of them were spared any birth defects. I do seem to metabolize Dilantin differently and need to keep my levels up above 20 to avoid a seizure. Just this week I learned that Dilantin is also measured in "free" levels and that as long as they are between 1 and 2, I am in the normal range. That is still confusing to me as my last reading was 32.2 with free level at 1.7. Along with the knowledge of my neuro, I have lowered my dosage from 260 to 230. He hates Dilantin because it is so hard to keep a balance on levels especially as we age. For now, I have no plans to switch to another drug because Dilantin has kept me safe from seizures and all drugs have side effects. In a perfect world, I would not have to take any drugs at all. F 65 49 years
230 1X day
2/26/2016
Email
 5  Brain Tumor/Seizure Disorder I have had almost no problems on this drug except for some bone thinning. Dilantin has allowed me to have a wonderful life, husband, daughter, career. I am dealing right now with a doc who wants to switch me because of the bone issues. Not sure what I will do, but really wonderful drug for me. As long as I take my pills I am doing just fine. F 43 20 years
500 1X day
8/15/2014
  

DILANTIN  (PHENYTOIN SODIUM):  Phenytoin is used to prevent and control seizures (also called an anticonvulsant or antiepileptic drug). It works by reducing the spread of seizure activity in the brain.    (Sources: U.S. Centers for Medicare Services, FDA)

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