Dilantin for Epilepsy User Reviews
Dilantin has an average rating of 7.9 out of 10 from a total of 27 reviews for the treatment of Epilepsy. 70% of reviewers reported a positive experience, while 19% reported a negative experience.
Reviews for Dilantin
- Notmy...
- Taken for 10 years or more
- October 9, 2019
"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."
- carol...
- Taken for 10 years or more
- October 15, 2019
"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."
Frequently asked questions
- Iano
- Taken for 10 years or more
- March 19, 2014
"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."
- stex
- Taken for 10 years or more
- December 24, 2016
"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 nightmare for all. The med can be good to stop nocturnal tonic clonics if you are having those. 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."
Are you taking this medicine?
- LJWee...
- August 14, 2017
"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."
- Goofy
- Taken for 10 years or more
- February 6, 2020
"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."
- Calli...
- Taken for 5 to 10 years
- August 20, 2016
"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."
- cindy...
- November 10, 2010
"I was put on Dilantin a month ago after having a 30 minute Grand-mal seizure. I haven't had another seizure yet but can't stand the side effects. I'm so dizzy and light headed. I have a hard time walking and keeping my balance. I also am having a hard time concentrating and remembering things."
- Kenny...
- August 29, 2011
"I have had grand mal seizures since I was 9 years old and was involved in a car accident. I have taken Dilantin for over 50 years, with good results. It has controlled my seizures pretty well until recently. I was diagnosed with COPD 2 years ago, and in that time, I have been having seizures every 3-6 months. My doctor switched me to Keppra 6 months ago, and in that time, I have had at least 1 seizure a month. I think it's time to switch back to what works."
- onelu...
- July 10, 2014
"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."
- Ernesto...
- Taken for 10 years or more
- October 3, 2015
"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."
- Fit...
- Taken for 10 years or more
- January 11, 2021
"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."
- cwydner
- August 15, 2009
"I have had seizures for 40 years. I started on Dilantin and phenobarbital. I had breakthroughs with petit mal seizures, but my grand mals were controlled. When I became pregnant they stopped the phenobarbitol and started me on tegretol. I had more seizures, petit mal and partial complex. Finally a new doctor started me on phenobarbital again with the Dilantin and Tegretol and I rarely have any seizures. When I do they are only petit mal and last only a minute or so."
- Dr CK
- June 8, 2016
"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."
- mscam...
- April 19, 2010
"I have had good but not great response with Dilantin. The medicine helps to reduce my seizures significantly but the side effects are not fun. I experience shaking hands, anxiety, and being very klutzy and forgetful. I have been on the medication for just over nine years and the seizures have slowed, but even on the treatment I'll still experience grand mals that are significant; but not as bad as they used to be. I was just wondering what the real long term effects are, and what to look out for."
- Mrs...
- March 12, 2009
"I have been using dilantin for my epilesy for about 38 years now, it has been an excellent drug that has been used other than the swelling of the gums. I have also had 3 children, which our doctors in our town freaked out about while being on medicine. I think they were very happy when the pregnancy ended. But my babies were all healthy babies and I did breast feed."
- Anonymous
- Taken for 1 to 2 years
- August 15, 2012
"I have been on dilantion and phenobarbitone both taken at night. I haven't had any gramdmals in two years. I've notice some type of rash on my side that doesn't seem to ever go away and feel a lot more stress and some weight gain but with the two mixed together it works great. I sleep well and have a lot of energy."
- Groov...
- Taken for 10 years or more
- July 12, 2021
"I was diagnosed with epilepsy in 1971. Have taken Dilantin for 50 years and have been seizure-free for the last 17. However, my doctor is weaning me off the Dilantin and onto Keppra because I am starting Harvoni for Hepatitis C and Dilantin is contraindicated. I am quite scared that I will experience breakthrough seizures, but my doctor will not allow me to take life-saving Harvoni without starting the Keppra. :("
- Wendas
- Taken for 5 to 10 years
- December 3, 2019
"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"
- JoeM
- February 8, 2009
"I've been on Dilantin since 1979 and have not had any issues or seizures."
- christy...
- November 10, 2008
"It is a miracle drug and it works fantastically."
- Anonymous
- November 8, 2009
"I've been on Dilantin for about 20 years and it works for me."
- Anonymous
- June 21, 2009
"It was okay, I took it for 15 years then they changed it 2 years ago and I cannot take it anymore."
- Chelle
- Taken for 6 months to 1 year
- December 7, 2012
"The first 3-4 days made me a bit groggy immediately after taking it, I couldn't drive. Within a week, I adjusted quickly."
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.
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"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."