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User Reviews for Dilantin to treat Seizures

The following 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.

Dilantin Rating Summary

User Ratings
37% (10)
22% (6)
4% (1)
4% (1)
4% (1)
4% (1)
4% (1)
7% (2)
4% (1)
11% (3)
7.2/10 Average Rating
27 ratings from 36 user reviews

Compare all 86 medications used in the treatment of Seizures.

Reviews for Dilantin

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

“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
Rog March 3, 2019

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

“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

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

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

“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

“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

“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
Pepileptic August 28, 2015

“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

“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
no job · Taken for 2 to 5 years December 29, 2014

“Side effects- over 5 years losing hair but I take it 3 times a day with other medication for Multiple Sclerosis.”

8 / 10
DTUM · Taken for 10 years or more May 18, 2014

“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 / 10
Arabella123 September 25, 2013

“I have been taking Dilantin for about two weeks and so far no problems, hopefully I won't have any.”

9 / 10
Catalytic · Taken for 1 to 6 months September 5, 2013

“I've been on Dilantin a short while. First month was fine. 5th week I started getting low grade fevers, nausea, pinprick rashes, slightly swollen gums. 6th week my gums were very swollen, so much that it hurts to eat and talk. No sex drive for who knows how long, acne like I've never had before, vasodilation to the point of my entire body being red and feeling extremely hot - 98 degrees temperature, compared to a normal 80 - 85. I haven't had any seizures, but I'm miserable, so I'm titrating down and will try something else.”

6 / 10
LA Breeze June 18, 2013

“I was on Dilantin (300 mg per day) over 20 years of my Air Force career with no side effects and no seizures. I was unknowingly switched to a generic brand and immediately began having seizures. Attempts to use compensate with Trileptal, Keppra, Vimpat, etc. did not completely remove my seizures like Dilantin. My neurologist is transiting me back to brand name Dilantin so my insurance will cover the cost.”

10 / 10
SANJAYSWARUP · Taken for 1 to 2 years July 9, 2012

“I am on 300 mgs of Dilantin one day and 400 mg the next day. Unfortunately, the day I take 400 mg I do not get the full sound sleep at night. What are the experiences of others?”

9 / 10
twitchymcgee October 12, 2011

“After about 8 days of being on Dilantin, I had a horrible allergic reaction. I woke up at like 4:30 with unbearably itchy hives that literally covered my whole body....face, shoulders, chest, stomach, back, buttocks & legs....even on the backs of my hands and feet, with a few spots on the palm of my hand. It sucked, needless to say. It also made me really tired all day, even though I'd take it at night. I'm now starting on KEPPRA. Hope it works.”

1 / 10
elvis3 January 1, 2011

“I am a 47 year old male with seizure disorder/Epilepsy. I had my first Grand Mal seizure at 28. Since then I have been taking Dilantin 100mg 3 times a day. At first (the first 3 months I experienced unbearable side effects lightheadedness, etc.) so my doctor changed me to Keppra. The cost of Keppra was way to expensive so I went back on Dilantin. After several more months my body got used to it and I started having zero side effects . After taking it now for 19 years I NEVER have seizures whatsoever but I never miss a dose. 100 mg 3 times a day. I think it is a wonderful medicine and is very inexpensive.”

10 / 10
comdrugs June 12, 2010

“Works fast and was effective for me, but the side effects left me in never-never land. Could not think straight, had no short-term memory, was dizzy, and had no sense of time. Good Luck and keep trying till you find one that works for you.”

3 / 10
almost killer drug May 13, 2010

“I experienced Stevens Johnson Syndrome when I first started taking this drug. It took 3 months of high doses of prednisone to recover. ”

Anonymous March 14, 2010

“I have been taking Dilantin for a few months now for both Petit-mal and Grand-mal seizures. I have experience all of the side effects from the medication. My lymph nodes are swollen and very painful. It is making it difficult to talk. my whole face and neck are swollen as well. I have had painful headaches since two weeks after I started taking the medication. I have also had a fever for the past month around 99 degrees to 100 degrees. This medication works for other members of my family, but it does not work for me.”

2 / 10
Anonymous March 10, 2010

“My 6 year old son suffered seizures for over a year until Doctor gave him Dilantin in the hospital. No more seizures after the first dose. It's been 2 years now. Dilantin was a life changing medicine for us.”

10 / 10
Anonymous October 17, 2009

“I think I might be allergic to this medicine as I had the hives in the evening from my scalp down. ”

4 / 10
Sanosuke October 13, 2009

“This medication was prescribed to me as a 37 year old cancer patient due to having suffered 3 seizures over the summer all of them grand mal seizures. Presently taking this medication without side effects (aside from being a bit slow in action).”

10 / 10
SUEY December 4, 2008

“I saw one of your members mention that since she had been taking dilantin she has tenderness or soreness in her breasts, this was very interesting to me because my husband is now on dilantin (after brain surgery for a precaution) and he too has very sore nipples. This is the only different drug he is taking. He is a disabled Vietnam vet and takes 23 medications and it has only been since they added the dilantin did his breasts become sore.”