Phenytoin for Epilepsy User Reviews

• Old...
• Taken for 10 years or more
• February 27, 2021

Phenytoin "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 the first year adjusting to meds, I have only had seizures if I have not gotten enough sleep. Driver's 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."

• Not...
• Taken for 10 years or more
• October 9, 2019

Phenytoin "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 8 times more expensive. Now I can't find prescriptions that work."

• car...
• Taken for 10 years or more
• October 15, 2019

Phenytoin "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."

• ste...
• Taken for 10 years or more
• December 24, 2016

Phenytoin "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 dose 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 blood work regularly. Find a good epileptologist you get along with."

• Ian...
• Taken for 10 years or more
• March 19, 2014

Phenytoin "I had my first grand mal seizure out of the blue at 26 years 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 330 mg per day (130 mg in the morning and 300 mg 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."

• Goo...
• Taken for 10 years or more
• February 6, 2020

Phenytoin "Been using Dilantin for 48 years. Side effects: (a) neuropathy in feet after 38 years 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, the 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."

• Cal...
• Taken for 5 to 10 years
• August 20, 2016

Phenytoin "Took Dilantin for several years, since the 1980s. Now it's apparent I have a secondary disability of osteoporosis after seeing an 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."

• LJW...
• August 14, 2017

Phenytoin "I started Dilantin in 1974. About 25 years of taking it has given me peripheral neuropathy. No doctor 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."

• Ken...
• August 29, 2011

Phenytoin "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."

• Fit...
• Taken for 10 years or more
• January 11, 2021

Phenytoin "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 liver function test taken every 6 months, but no major issues there. Overall, never had any seizures in 1990."

• one...
• July 10, 2014

Phenytoin "I have been on Dilantin for 20 years. It has helped me from having seizures when I remembered to take it, but for the past 5 years, I have taken it every day like I'm supposed to. I take 300 mg every day in the morning at the same time. There has been one time that I had a seizure while taking my medicine every day. It happened 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 it's not all the time. I have 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 taking it). Better safe than sorry."

• cin...
• November 10, 2010

Phenytoin "I was put on Dilantin a month ago after having a 30-minute grand mal seizure. I haven't had another seizure yet, but I can't stand the side effects. I'm so dizzy and lightheaded. I have a hard time walking and keeping my balance. I also am having a hard time concentrating and remembering things."

• Dr ...
• June 8, 2016

Phenytoin "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 of phenytoin, I was still having problems. Since then, I have been returned to Dilantin and reduced to 300 mg 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, I was put on Strattera years ago. The combination of Dilantin and Strattera 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."

• cwy...
• August 15, 2009

Phenytoin "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 phenobarbital 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."

• Ern...
• Taken for 10 years or more
• October 3, 2015

Phenytoin "In 1981, I 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 had 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 had some backaches, and I've developed osteoarthritis."

• msc...
• April 19, 2010

Phenytoin "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."

• Gro...
• Taken for 10 years or more
• July 12, 2021

Phenytoin "I was diagnosed with epilepsy in 1971. I 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. :("

• Mrs...
• March 12, 2009

Phenytoin "I have been using Dilantin for my epilepsy 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 breastfeed."

• Anonymous
• Taken for 1 to 2 years
• August 15, 2012

Phenytoin "I have been on Dilantin and phenobarbital, both taken at night. I haven't had any grand mal seizures in two years. I've noticed some type of rash on my side that doesn't seem to ever go away, and I 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."

• Wen...
• Taken for 5 to 10 years
• December 3, 2019

Phenytoin "Dilantin worked for my epilepsy, and the side effects are not bad, they go away. If you have a high metabolism, you will have high Dilantin levels even when you take it the right way. You just need to find your dose."

• FRE...
• December 29, 2013

"I have been taking Dilantin since I was 13 years old, now I am 66 years old. I take 360 mg at night. I haven't had a seizure (grand mal) for 33 years now. I get headaches sometimes (migraine). I sleep well. I am an active type of person. I swim, ride a bike, and go to the gym 3 times a week."

• coc...
• September 13, 2013

"I am 37 years old and was diagnosed with epilepsy 5 weeks ago. I was put on the phenytoin capsules and take 300 mg at bedtime (which I take faithfully). Lately, I've noticed my energy level has increased and I haven't had a seizure in 8 days, but I notice I wake up with a headache, mostly in the back of my head. I also have been having some really weird dreams. It is 3 in the morning here and, of course, I awoke with a headache and a slightly stiffer neck."

• Mar...
• Taken for less than 1 month
• July 23, 2021

"Found I was allergic to phenytoin. On the 7th day, broke out in an itchy rash from head to toe. It only took a few hours for the spreading of the rash to cover my entire body. I'm miserable. Dr. had me stop cold turkey. I'm so disappointed. I had high hopes for this drug. I cried for hours yesterday. The rash is horrible. This drug also caused horrible gas. Was having to take Gas-X along with it."

• K J...
• February 10, 2011

"I'm 24 years old and started to have seizures about 2 1/2 years ago. I had problems at first accepting that I was an epileptic and waited until I had my 5th seizure (grand mal) before I would let the doctor put me on medication. I started on 300 mg of phenytoin a day and went up to 500 mg a day. First it was too little, and then it was too much and really hurt my liver. Now I'm on 400-500 mg a day alternating, which can be a pain in the butt trying to keep track of what dose I need. But since I started alternating, I haven't had a seizure. It does work!"

• Chr...
• December 20, 2014

Phenytoin "I've been taking this medicine for years. I was having difficulties keeping my medicine levels in the proper zone. The extended release has been great. I'm in a small group of people who need their Dilantin level slightly above the 10-20 range. I'm able to stay at 20-22 with the proper dosages that have been prescribed for me. I cannot take the generic brand. When I was on the generic, my levels were not as stable."