Phenytoin for Seizures User Reviews (Page 2)
Brand names: Dilantin, Phenytoin Sodium, Phenytoin Sodium, Extended Release, Phenytek Di-Phen
Phenytoin has an average rating of 7.4 out of 10 from a total of 45 reviews for the treatment of Seizures. 62% of reviewers reported a positive experience, while 18% reported a negative experience.
Reviews for Phenytoin
- Anonymous
- March 14, 2010
Dilantin (phenytoin) "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."
- Tim
- Taken for 10 years or more
- January 31, 2024
"It has kept me seizure-free for over 10 years now. I have grand mal seizures, but I'm fully conscious while my body shakes, and I can't breathe for 2 to 3 minutes until I stop from lack of oxygen. It's is so awful. That's why I'm glad phenytoin has helped me avoid that. I know it comes with some bad side effects long-term, so I'm worried. I've been taking it for 20 years already. But whatever stops the seizures, I guess."
Frequently asked questions
- Anonymous
- Taken for 10 years or more
- March 17, 2021
Dilantin (phenytoin) "I was reading your article above you mentioned hair loss while taking Dilantin. Try 500 mcg of biotin once a day. You want to protect your bones to with calcium, magnesium and vitamin D. Always talk to your neurologist first. Good Luck"
- kimow...
- 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."
Are you taking this medicine?
- jenni...
- April 6, 2008
Phenytek (phenytoin) "I have been on this medicine for almosy 6 years. I have not had any side effects as of yet. I am monitored by my doctor every 6 months. This medicine has changed my life I was not able to do things such as drvie or even work. Since on the meds I have been seizure free and living my life."
- Rachael
- Taken for 10 years or more
- December 27, 2021
"I was given phenytoin 300mg daily after my first seizure at 11 years old. I am now 68 and have been more or less seizure free for most of my life. However recently I have been suffering badly from neuropathic pain and numbness in my feet. I am going to have to find a good replacement drug as sadly the medication is now giving me very nasty side effects. Watch out if you take this for a long time but for years it’s been a very effective medication."
- Sanos...
- October 13, 2009
Dilantin (phenytoin) "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)."
- Patri...
- January 23, 2023
Dilantin (phenytoin) "I have never had a seizure in my life I'm 59 years old about year and a half ago started having what they called silent seizures this went on for a year before they found out I was having seizures I was having seizures everyday they put me on dilantin for a year and a half I can tell already the bad side effects - I've gone from 150 pounds to 93 pounds falling broken bones walking around like I'm drunk but it did stop the seizures."
- Attit...
- 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. "
- DJTra...
- 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."
- Johnbo
- Taken for 10 years or more
- April 19, 2021
Dilantin (phenytoin) "In 1992 (I was 26) I had my 1st seizure while I was asleep and after a couple more I was put on Dilantin, 300 mg at bed time. About 10 years later I started having what are called deja vu's and now take oxcarbazepine, 600 mg in the morning and 600 mg with the Dilantin at night. Dilantin has helped me have a great life, (last seizure about 10 years ago) Has anyone else had these issues?"
- Aloysia...
- November 11, 2007
"I've been taking 3 100mg Dilantin Kapseals since 1985 and it seems I am fine. Never again a seizure. My health care plan informs me that these are no longer made. They are prescribing generic phenytoin as similar. I'd understood the generic were not quite as good. Perhaps due to the fact they must be taken three times a day."
- katie...
- March 9, 2008
Dilantin (phenytoin) "I have been on dilantin since I was about 17. It has been working a lot better than the depekene I was taking before. When I was pregnant and started to gain a lot of weight, My doctor had to increase the dose. I am 31 now and my seizures are very well controled while on dilantin."
- Dilan...
- Taken for 5 to 10 years
- December 17, 2021
"Pharmacy changed my client's Dilantin to the Aurobindo brand and it has really messed up his health bad with seizures and unable to stabilize Dilantin levels to normal limits for 8 MONTHS now! BAD COMPANY making BAD MEDICINE!!"
- 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."
- RVRSEDG
- April 20, 2008
"I was 34 years old before being diagnosed with rare epilepsy. I have seizures 1/16 of a second out of every minute. I knew nothing about this disease, my doctor tried many therapy plans. I finally had to go into hospital - there I got dilantin through a drip. I told my doctor it seemed be working. I have been taking 10 a day ever since. Thanks it has made my quality of life much better."
- trouble...
- 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."
- 55bar...
- Taken for 10 years or more
- May 1, 2021
Dilantin (phenytoin) "On Dilantin extended plus phenobarbital for 47 years for seizures. Not an episode for 38 years. Requires regular check of blood level with adjustment when elevated. Excellent dental hygiene important. Bone loss after long term use with moderate anemia. These effects worth it for total control of episodes. Specialist prescribes brand only due to efficacy."
- Nicki...
- Taken for 10 years or more
- March 13, 2024
"I have been taking Dilantin 100mg x 4 for epilepsy since 1967 - 54 years! No seizures in over 44 years when I went off it for 7 mos. This has been the best drug invented for me. Have led a wonderful life, driving, healthy, and active. Finished graduate school and taught for 25 years. I defied my high school teacher's expectations when she told me I would never get a job or amount to anything with a seizure disorder. The occasional depression and tired feeling is offset with drinking lots of coffee, eating lots of greens and fruit, and exercise."
- riggles
- August 30, 2007
Dilantin (phenytoin) "I have been using dilantin since I was 15 years old and have had no side affects. I am 42 years old now. I thank god because I have grown out of most of my seizures."
- SANJA...
- 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?"
- Anonymous
- April 5, 2008
Dilantin (phenytoin) "I'm 52 years old and had a Grand Mal 4 years ago and have been taking Dilantin since without incidence. No side effects. The medicine is effective and relatively affordable."
- almost...
- May 13, 2010
Dilantin (phenytoin) "I experienced Stevens Johnson Syndrome when I first started taking this drug. It took 3 months of high doses of prednisone to recover. "
- Anonymous
- October 17, 2009
Dilantin (phenytoin) "I think I might be allergic to this medicine as I had the hives in the evening from my scalp down. "
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
Learn more about Seizures
Care guides
- Epilepsy
- Epilepsy and Pregnancy
- Generalized Tonic Clonic Seizures
- Nonepileptic Seizures
- Status Epilepticus
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Other brands
Dilantin, Phenytoin Sodium, Prompt, Phenytek
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- Phenytoin Oral Suspension (FDA)
Other brands
Dilantin, Phenytoin Sodium, Phenytek
Dilantin (phenytoin) "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."