Dilantin for Seizures User Reviews

• NVRick
• Taken for 10 years or more
• December 20, 2016

"Brain deterioration 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."

• 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."

• LA Br...
• 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."

• Oldman...
• 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 and tooth decay. 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."

• nodil...
• July 15, 2007

"I took dilantin to control grand mal seizures for close to forty years. It worked fairly well for me but is caused peripheral neuropathy in my feet and I had to change to Neurontin which has worked just as well. This adverse reaction was not mentioned to me until it was too late and the nerve damage is irreversible. "

• elvis
• 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."

• Bjc
• 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."

• 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."

• sigh
• December 26, 2007

"I have been on Dilantin for over a decade and doing really well until recently. If you are experiencing troubles with the new Dilantin you may want to look at what others are saying on the Epilepsy Foundation's forum."

• Pepil...
• 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."

• dsmolik
• August 6, 2007

"I have ben taking this various doses of Dilantin for over 40 years. Although not perfect, it controls my seizures well. However, since menopause I have noticed a gradual increase of phenotin levels in my blood and therefore need to have regular checks. It is difficult to know whether I am under-dosed or over-dosed as my symptoms are similar for both. "

• Anonymous
• February 27, 2008

"I have been taking dilantin for 3 weeks now and I have experienced most of the side effects including the more serious ones such as fever, hives, loss of balance and swollen, very tender gums. I went to emergency 2 nights ago with skin rashes, painful gums and painful eyes. The doctor checked my blood and dilantin levels and said it was completely normal. She told me to take benadryl as it was an allergy to something else. I still believe it might be an allergy to dilantin."

• comdr...
• 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."

• RLMeek
• September 13, 2007

"I have been taking Dilantin to control grand mal seizures for about 16 years now. It works very well for me. However, I recently learned that prolonged use can result in a higher risk of osteoporosis. Since women in my family three generations back have all had this condition, I'm now concerned about my bones and the continuation of this medication."

• Catal...
• 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 libido 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."

• Rhodesy
• March 14, 2008

"I am 31 years old and have been taking dilantin since I was 14 years old. It works very well for me and the only time I ever had any complications is when I have gone more than 1 day without taking it. I suggest a days of the week pill holder to anybody that has a problem remembering to take their meds."

• twitc...
• 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."

• 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 worse, and I have no libido 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."

• 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."

• 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."

• 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."

• Anonymous
• September 15, 2008

"Been taking Dilantin for 36 yrs. Had a gran mal seizure. As long as I take medicine things are good. Side effects are eyes sensitive to bright sunshine, gums swell, get tired quicker. Has improved quality of life."

• mentot
• June 7, 2008

"I have tried several anti-convulsant medicines, even, had combinations before. Dilantin provides better result for me among all. There were few false side effects like rashes, constipations, nausea and dizziness but it really depends on what you have eaten. Just make sure that you get a regular dilantin assay for your safety. I think, it really depends on what kind of seizure and how your body reacts to medicines. "

• Cherry...
• 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."

• PDG
• Taken for 10 years or more
• December 21, 2020

"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."