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User Reviews for Phenytoin to treat Seizures

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

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.

Phenytoin Rating Summary

User Ratings
10
33% (12)
9
22% (8)
8
6% (2)
7
6% (2)
6
6% (2)
5
3% (1)
4
6% (2)
3
8% (3)
2
3% (1)
1
8% (3)
7.2/10 Average Rating
36 ratings from 47 user reviews

Compare all 86 medications used in the treatment of Seizures.

Reviews for Phenytoin

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

Dilantin (phenytoin): “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
trouble maker April 5, 2020

“I have been on phentyoin sodium for a long time and at first it didn't help right away but, my doctors increased my meds and I'm proud and glad to say I haven't had any attacks in the last 5 yrs. I get my levels checked and I'm able to do things I thought I would never get to do. I'm glad my doctors made the change. and the meds have never giving me any troubles none of the side effects have taken place and I'm 39 and been on it for 15yrs grand total. I'm pleased.”

10 / 10
DJTrampled · Taken for 10 years or more November 17, 2019

“Dilantin, taken for decades to control seizures when a kid. Taking 400mg Phenytoin generic (insurance) instead of 300mg Dilantin daily. Being switched to Vimpat because of long-term-use potential side effects.”

6 / 10
Rog March 3, 2019

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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
D. P. · Taken for 10 years or more February 23, 2015

Phenytek (phenytoin): “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 / 10
no job · Taken for 2 to 5 years December 29, 2014

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

8 / 10
Attitudee · Taken for 2 to 5 years October 2, 2014

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

Dilantin (phenytoin): “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
kimowasabi1 · Taken for 5 to 10 years February 23, 2014

“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.”

Arabella123 September 25, 2013

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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
jbrich April 3, 2011

“After 4 known grand mal seizures, my doctor put me on phenytoin 2 months ago. Do not have to many complaints except my head feels like something is crawling in it sometimes, forgetting things, like common names for things, peoples names and being tired. I am 48 yrs old, never would take aspirin but want to be safe for myself and others. My last seizure .... there was no tell tale sign before and I was just moments from getting into my car.”

9 / 10
elvis3 January 1, 2011

Dilantin (phenytoin): “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

Dilantin (phenytoin): “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