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User Reviews for Dilantin

Dilantin has an average rating of 7.6 out of 10 from a total of 69 ratings on 65% of those users who reviewed Dilantin reported a positive effect, while 21% reported a negative effect.

Condition Avg. Rating Reviews Compare
Neurosurgery   8.0
1 reviews 5 medications
Epilepsy   7.8
31 reviews 54 medications
Seizures   7.3
37 reviews 52 medications
Summary of Dilantin reviews 7.6 69 reviews

Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.

Reviews for Dilantin

OldWiseMan · Taken for 10 years or more February 27, 2021

For Epilepsy: “I’ve been on Dilantin/Phenytoin since 1955 (66 years). 100 mg 3 times a day. Also phenobarbital 32.4 3 times a day. Since first year adjusting to meds have only had seizures if I have not gotten enough sleep. Drivers license- yes, since I was sixteen. I have had a few side effects that have been mentioned here, but none that really bothered me. Overall I’ve led a very normal life and I feel really blessed that I haven’t had a chronic problem with seizures. Dilantin is a mainstay for me. All the best to everyone.”

10 / 10
Fit Man · Taken for 10 years or more January 11, 2021

For Epilepsy: “I have been on 330 mgs of Dilantin since 1986 with very few side effects. Swollen gums sometimes but seems to have improved over the years after my dose rate was settled on. Also do have a lever function test taken every 6 months but no major issues there. Over all never had any seizures in 1990.”

9 / 10
PDG · Taken for 10 years or more December 21, 2020

For Seizures: “I've been using Dilantin for 23 years and I've been seizure free. Unfortunately, my insurance company has decided that they don't want to cover it, so I'm paying all out of pocket. I've tried generic versions, they don't work for me, so I'm thinking of changing. But I've been very pleased with Dilantin, to this point.”

10 / 10
Favidclu July 23, 2020

For Epilepsy: “I took Dilantin for 40 years. I am now 75years old and my blood pressure reading was 110/60 with a pulse of 55 last week at my annual physical. I have been off the medication for 25 years.”

10 / 10
Kim · Taken for 10 years or more May 5, 2020

For Seizures: “I used to have seizures several times a day I was glad that I went on it. If I have side effects I have not noticed them. My husband also has seizures his medication makes him sleepy, dizzy, and he has chills. He has asked about my medication several times and they keep telling him they are going to discontinue it.”

10 / 10
Goofy3 · Taken for 10 years or more February 6, 2020

For Epilepsy: “Been using Dilantin 48 years. Side effects (a)neuropathy in feet after 38 yrs of use. Can't drive. (b) various continual skin problems (nothing serious just irritating {pun not intended} and resolved with a cream. (c) Cost- since first taking it cost has gone up 156% On the upside no seizures for 48 years. At 82 years of age I am thankful for the control over seizures Dilantin has given me and would not change.”

10 / 10
Wendas · Taken for 5 to 10 years December 3, 2019

For Epilepsy: “Dilantin worked for my epilepsy and the side affects are not bad, they go away and if you have a high metab you will have high Dilantin levels even when you take it the right way, you just need to find your dose”

10 / 10
carolinus · Taken for 10 years or more October 15, 2019

For Epilepsy: “I've been on and off Dilantin now for 50 something years for clonic-tonic seizures diagnosed when I was a teen. No matter whatever new and improved potion hits the market I always end up back with Dilantin. The reason; for me it works consistently when nothing else does. And I've been on most others over the years. It can have some rough side effects and it requires care to get/keep the levels right. All AEDs have their issues and Dilantin has more than its share. For me it's simply better than anything else on the market, no matter how new.”

10 / 10
Notmyname · Taken for 10 years or more October 9, 2019

For Epilepsy: “I started on Dilantin when I was about 11 years old, around 1981 to treat seizures in my sleep. 300 mg every night. It stopped all seizures, I had no side effects, and it was cheap. Never had a problem unless I missed more than 2 nights. Then the manufacturer changed the capsule around 2008 or 09 and they quit working, they claimed nothing changed but many people were complaining at the time, and the price has gotten 8x more expensive. Now I can't find prescriptions that works.”

3 / 10
Rog March 3, 2019

For Seizures: “Been using Dilantin since a TBI in 1967 at 10 years old with Grand-mals. It’s now been 52 years I have taken Dilantin. The Grand-mal are history and it’s been years since I’ve had a seizure. I take 200 mg Dilantin B.I.D. along with Phenobarbital 64.8mg B.I.D. I am good to go! Brand name Dilantin has greatly improved my quality of life. ****NOTE FYI: The only seizures I’ve had in the last 12 years is when the hospitals gave me Phenytoin generic in place of Dilantin. This also happened at a Mayo Clinic hospital and the Pharmacist told to keep using NAME BRAND Dilantin unless I want another seizure. The price has risen yet it’s worth every penny, to me. Yes, it would outstanding if the price can be reduced so other less fortunate individuals can have access to this great drug.”

10 / 10
Anonymous · Taken for 10 years or more January 19, 2019

For Epilepsy: “I have been on it for 18 years. I now have pins and needle feelings everywhere. It is really hard for me to sleep. I am wondering if I should mention this to my doctor?”

Cherry Von Venom · Taken for less than 1 month May 26, 2018

For Seizures: “I had my first seizure at the beginning of April. I was in the hospital for weeks as I had kidney failure as well. Only two weeks after I got out I was in my car when the second seizure struck causing me to crash. I wrote off my car and have my license suspended. I was put on Tegretol CR but the side effects were terrible so now I'm on 300mg of dilantin and haven't had a seizure since. Unfortunately since my first one my sleep has been terrible.”

9 / 10
Jan · Taken for 2 to 5 years May 20, 2018

For Seizures: “I've been on dilantin for about 4 years now. I'm taking 900mg per day. I experience tingling / numbness in hands and fingers. I get many more ingrown hairs on face and in public area, vertigo but not as bad as first 6 months of taking. I continue to have seizures but frequency is average of 1 ever couple of months. I'm taking Dilantin in combination with other drugs for seizures which have changed. Dilantin has been the one which stays constant.”

7 / 10
Focal Epilepsy · Taken for 10 years or more August 20, 2017

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 / 10
LJWeezie August 14, 2017

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 / 10
stex · Taken for 10 years or more December 24, 2016

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 / 10
NVRick · Taken for 10 years or more December 20, 2016

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 / 10
CallinMrG · Taken for 5 to 10 years August 20, 2016

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 / 10
Dr CK June 8, 2016

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 / 10
Jills222 · Taken for 1 to 6 months April 29, 2016

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 / 10
dlaman · Taken for 1 to 2 years February 21, 2016

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 / 10
Oldman now · Taken for 10 years or more October 31, 2015

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 / 10
Ernesto Evangelista · Taken for 10 years or more October 3, 2015

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 / 10
Pepileptic August 28, 2015

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 / 10
Bjc19 · Taken for 10 years or more April 14, 2015

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 / 10

This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.