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User Reviews for Phenytoin

Also known as: Di-Phen, Dilantin, Phenytek, Phenytoin Sodium, Phenytoin Sodium, Extended Release, Phenytoin Sodium, Prompt

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care. Learn more about Phenytoin.

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Condition Avg. Ratings Reviews Compare
Neurosurgery
8.5
   
2 reviews 5 medications
Trigeminal Neuralgia
8.0
   
4 reviews 9 medications
Epilepsy
7.2
   
28 reviews 41 medications
Seizures
6.7
   
41 reviews 49 medications
Anxiety
6.0
   
2 reviews 56 medications
Peripheral Neuropathy
1.0
   
2 reviews 6 medications
Summary of Phenytoin reviews 6.2 80 reviews

Reviews for Phenytoin

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Dilantin (phenytoin) for Epilepsy: "Evening, I have been on this medication since I was 12 years of age. Why do doctors or neurologists NOT tell you about Epilepsy? About the Half Life of Phenytoin, about Sudden unexpected death in epilepsy (SUDEP)? Those who have Epilepsy do not necessarily know or at all ANYTHING about that cause people in general think you are WEIRD. SICK?"

   
8.0

Focal Epilepsy (taken for 10 years or more) August 20, 2017

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Dilantin (phenytoin) for Epilepsy: "I started dilantin in 1974. About 25 years of taking it has given me peripheral neuropathy. No Dr in all those years told me that it might do this to me. I am changing over to Keppra but the damage is done. My balance is off and for PAIN I take lyrica. If dilantin works for that's great, but we should be informed that neuropathy might happen."

   
9.0

LJWeezie August 14, 2017

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For Myotonia Congenita: "It's been only a week I am on it , reduced my anxiety, it reduced unwanted electrical activity in both hemispheres(was irritating) its life saver for me, SE : gum growth ,low vitamin d causing joint pain"

Neweric August 11, 2017

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For Trigeminal Neuralgia: "I am taking Dilantin and Tegretol, for trigeminal neuralgia, I had what they called breakthrough pain and that was my Neurologist put me on Dilantin. I have been on both for close to a year or so now, but I am finding out that I seem to be reacting both or one but I do not know which one I am reacting to. The pain is gone but I am fighting with the side effects of which drug I am unsure as they ave similar side effects."

AKRIKA (taken for 1 to 2 years) June 7, 2017

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Dilantin (phenytoin) for Epilepsy: "After 41+years on various meds many included this one. Unfortunately, it must be monitored closely and depending on factors like body weight, other meds taken, caffeine intake, and more, it can be a difficult balancing act. Dilantin toxicity has happened and is a living hell for all. The med can be good to stop nocturnal tonic clonics if you are having those, which are life-threatening. Do your research, make sure dilantin levels are taken periodically at trough and consider more than just the 20 max if you take a does afterward. Make sure you have a liver profile taken periodically. A doc may have to be reminded but it's best to have one who knows meds and does bloodwork regularly. Find a good epileptologist you get along with."

   
3.0

stex (taken for 10 years or more) December 24, 2016

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Dilantin (phenytoin) for Seizures: "Brain rot. I have been on dilantin for over 40 years. Have just discovered dilantin is cause to numbness in legs, feet, balance and walking control. How so?" It's called cerebellum atrophy. Thats where your cerebellum shrinks (my case about 40%) It will get worse if I continue to take it, putting me in a wheel chair. Only one medicine does that to you- Dilantin. DO NOT TAKE IT. If you are on it, get off it (as I am about to do) It was also considered at one time the most toxic medicine out there. Look it up in PDR. Did it stop seizures? yes. Do I want to be a cripple and eventually have to be fed. No. Get off it."

   
1.0

NVRick (taken for 10 years or more) December 20, 2016

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Dilantin (phenytoin) for Epilepsy: "Took Dilantin for several years, since the 1980's. Now it's apparent I have a secondary disability of Osteoporosis after seeing a endocrinologist and having a bone density test done. My doctor says it is likely due to the regular use of epileptic medicines with Dilantin being the most likely source."

   
1.0

CallinMrG (taken for 5 to 10 years) August 20, 2016

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Dilantin (phenytoin) for Epilepsy: "After back to back tonic-clonic(grand-mal) seizures in 1989, I was put on Dilantin. With differing insurance programs, many times generic forms of it had to be used. A year back, although on 400 mg gram of phenytoin was still having problems. Since then, have been returned to Dilantin and reduction to 300mg per day. With this reduction, the blood tests are running high. However, some seizures still exist, but no massive seizures or complete blackouts are present. To handle mental recall problems, was put on strattera, years ago. The combination of Dilantin and straterra has improved my communication abilities. The original difficulties were courtesy of brain damage due to an auto accident. The brain damage created the epilepsy and aphasia."

   
9.0

Dr CK June 8, 2016

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Dilantin (phenytoin) for Seizures: "I had an appointment with the neurologist who at the time deciding to put me on Dilantin and in two weeks I started bloating I figured it was stress over knowing that your GF of my life has to move back to Brasil just because it is a law and marriage was not legal. I didn't care that I was bloating and the rash I called and went back to show the nurse... It was only on my torso and didn't itch... So I stayed out late dancing with her and our friends and crashed around 3am. At 9am my entire body looked like I had blue and red tiny looking bruises and they weren't itchy but I all of a sudden said to my friend after dropping my GF at the airport."I need a hospital please drive me? I'm feeling really bad and I had no idea what I was in for. STS"

   
1.0

Jills222 (taken for 1 to 6 months) April 29, 2016

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Dilantin (phenytoin) for Seizures: "I began having focal seizures in 2011, not knowing what was going on, I wasn't diagnosed until 2013 after my first Grand Mal. Began taking Dilantin 500 mg per day. Seizures were much better, but my memory is completely shot, sex drive is null and I am way more easily agitated. If I miss a dose I will generally have a focal seizure. Doctor wants to add Keppra, but I am a little scared because of the depression possibility. I have withdrawn from friends a little already and do not need to add to that. Plus when I took it last week I was in bed exhausted at 7:30 for no apparent reason."

   
5.0

dlaman (taken for 1 to 2 years) February 21, 2016

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Dilantin (phenytoin) for Seizures: "Started on this med with phenob at age 12 due to grandmal seizure Seizures stopped at age 16 but I am now 70 with no seizures since. total of 58 years. Its 100 three times a day with phonobarb 30 three times a day. Had sore gums that rotted my teeth. Low b12 levels and low iron over time. I take B12 monthly, folic acid 5mg every second day. Small price to pay for no seizures for 58 years."

   
9.0

Oldman now (taken for 10 years or more) October 31, 2015

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Dilantin (phenytoin) for Epilepsy: "In 1981 I have had my first seizures. These were diagnosed as epilepsy. My neurologist put me on Dilantin. However, I got some side-effects dizziness, etc. Later on, I have no seizures for more than 8 years where another doctor decreased the dose to 2 tablets a day. After which, there were no more side-effects. I was seizure-free for more than 20 years now. Though I've got some backaches and I've developed osteoarthritis."

   
9.0

Ernesto Evangelista (taken for 10 years or more) October 3, 2015

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Dilantin (phenytoin) for Seizures: "I had my dosage increased 100 mg last year to 400 mg/day, and noticed an increase in side effects. My short term memory is awful, especially with names. I've also noticed mood swings, weight gain, and sensitivity have increased, and I'm still having seizures. It appears it's not the drug for me."

   
3.0

Pepileptic August 28, 2015

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Dilantin (phenytoin) for Seizures: "Have been on Dilantin for 15 years. After having a major seizure that was life threatening, I have had only one minor seizure 13 years ago. Very dedicated to the medication and don't miss doses. I am now 73 and doing fantastic. Won't change but I do watch my level and know when it is high or low."

   
10

Bjc19 (taken for 10 years or more) April 14, 2015

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Phenytek (phenytoin) for Seizures: "I had my first ever seizure on 8/4/93; one day before my 24th birthday, out of the 'clear blue.' I was first prescribed 400mg of Dilantin daily. I experienced muscle spasms/twitches, sleeplessness at night [and] sleepiness during my waking hours. I was switched to 400mg of Phenytek daily. At first the same symptoms persisted, but subsided over time. I have been on both Dilantin and Phenytek for 22 years; currently on Phenytek and my seizures are controlled, with minor/minimal side effects; occasional muscle twitching and/or headaches remedied with Tylenol. I hold down a full-time job, and I drive, so my #1 priority every night is to take my meds. So far, so good....."

   
10

D. P. (taken for 10 years or more) February 23, 2015

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Dilantin (phenytoin) for Seizures: "Side effects- over 5 years losing hair but I take it 3 times a day with other medication for Multiple Sclerosis."

   
8.0

no job (taken for 2 to 5 years) December 29, 2014

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Phenytek (phenytoin) for Epilepsy: "I've been taking this medicine for years. I was having difficulties keeping my medicine levels in the proper zone. The extended release has been great. I'm in a small group of people who need their Dilantin level slightly above the 10-20 range. I'm able to stay at 20-22 with the proper dosages that have been prescribed for me. I cannot take the generic brand. When I was on the generic, my levels were not as stable."

   
10

Chris Lab December 20, 2014

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For Seizures: "Had grand mal and was prescribed Phenytoin slowly upping dose from 100x3 to 100x6. I was considered under controlled status even having 1-3 seizure (partial complex)not during month but all same day. Checking blood levels everything seems good. Doc says probably female hormones causing imbalance. Seems I have some side effects like confusion, short term memory issues, can't stand metal in my mouth like silverware it's a weird feeling, insomnia. Well, next script is different manufacturer. I never thought it would be such a big deal but I started to feel high/intoxicated (not fun) blurry vision, skin tone is changing, swollen gums, tingling in face arms hands legs and feet along with slight numbness, feel unbalance. "

   
7.0

Attitudee (taken for 2 to 5 years) October 2, 2014

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Dilantin (phenytoin) for Epilepsy: "I have been on Dilantin for 20 yrs it has helped me from having seizure when I remembered to take it but the past 5 years I have taken it everyday like I'm suppose to I take 300mg everyday in the morning at the same time. There has been one time that I had a seizure while taking my medicine everyday it happen at night and I only know this because I woke my wife up in the middle of it . I do have problems remembering things that happened not even five minutes ago but its not all the time. I have the swollen gums and problems talking (Saying the wrong word at the end of a sentence). I have experienced dizzy spells but only if I took too much (Taking my meds and forgetting about taken it) Better safe than sorry."

   
7.0

oneluvforlif July 10, 2014

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Dilantin (phenytoin) for Seizures: "I found out that I had a cyst on my brain after having a seizure during football practice in college. Funny thing is that I had been playing football since I had been in the sixth grade and never new anything. Before any CT scan or MRI was performed, it was thought that the seizure was a result from contact while playing. After test were conducted, apparently the cyst was a result of spinal meningitis from my childhood. I'm not a doctor nor do I understanding everything but never the less, I was placed on Dilantin. It took about six months to regulate my dosage of 500 mg per day. I have now been on Dilantin for 28 years and have never had a seizure while taking my meds correctly. Football was over but, I live great life with Dilantin."

   
10

DTUM (taken for 10 years or more) May 18, 2014

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For Epilepsy: "I have taken phenytoin for nearly 3 years . I am now on 500mg which does concern me even though it controls my seizures really well. So far I have swollen gums and some memory and motivation problem, although I am 58 so that might account for that."

   
8.0

wear May 6, 2014

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Dilantin (phenytoin) for Neurosurgery: "I've been taking phenytoin for the past 8 months now as I had a bleed on the brain that caused me to fit. I've noticed that it's stopped me from having a seizure since the day I fitted. But ever since I've been feeling weak can't remember things from day to day and can't remember what I done like 10mins ago, I'm taking 300mg every night and I feel spaced out every day and can't be bothered doing anything I'm only 22."

   
8.0

docker March 24, 2014

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Dilantin (phenytoin) for Epilepsy: "I had my first grand-mal seizure out of the blue at 26yrs of age 39 years ago! Dilantin has kept me free from seizures when I have remembered to take the medication. Over the years I have had several other seizures but only due to neglecting to take the tablets. I am on 330mg per day (130mg in the morning and 300mg in the evening). I am very thankful to God for Dilantin! I do have a real tendency to be always tired and swollen gums, but otherwise no other side-effects."

   
10

Iano (taken for 10 years or more) March 19, 2014

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For Seizures: "I am 53 and have been taking 500 mg of Dilantin for over 7 years. I have had over 10 grand-mal seizures prior to taking Dilantin. I have not had any seizures since I go every 6 months to check Dilantin levels all good. Don't know what I would do without it. I can feel a little spacey if I don't take it on time I take all at once in the morning."

kimowasabi1 (taken for 5 to 10 years) February 23, 2014

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For Epilepsy: "I have taking dilantin since I was 13 years old, now I am 66 years old. I take 360mg at night, I haven't had a seizure (grand mal) for 33 years now, I get headaches sometimes (MIGRAINE), I sleep good, I am an active type person, I swim, ride a bike, go to the gym 3 times a week."

   
8.0

FRED/ December 29, 2013

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