Phenytoin User Reviews & Ratings (Page 3)

• D P...
• Taken for 10 years or more
• February 23, 2015

Phenytoin for Seizures "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 400 mg of Dilantin daily. I experienced muscle spasms/twitches, sleeplessness at night, and sleepiness during my waking hours. I was switched to 400 mg 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....."

• Jel...
• Taken for 10 years or more
• January 20, 2020

For Peripheral Neuropathy "First prescribed phenytoin for sleeping disorder 40+ years ago. Helped regulate sleep. 10 years later got extreme Graves' disease, no sleep for 2+ years. Took phenytoin 200 mg to regulate sleep between isotopes, but noticed it helped with muscle and joint pain. Then got connective tissue disease: debilitating with many splints. Asked for phenytoin. Along with indomethacin, totally cured. Amazing, terrible side effects every time tried to stop the drug. Then aortic/bifemoral artery bypass. Now have neuropathy in partially numb legs because so many nerves were cut during multiple repairs. I shouldn't need phenytoin, but whenever I tried to wean off, it makes my body feel terrible and every inch grates on me, so looks like I'll be taking 200 mg forever with no side effects as long as I continue. I'm a little thin person, 74, with no arthritis or other health issues. I'll never know how else phenytoin influenced me, but I think it helps with nerve pain and sleep regulation."

• Dil...
• Taken for 5 to 10 years
• December 17, 2021

For Seizures "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!"

• msc...
• April 19, 2010

Phenytoin for Epilepsy "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."

• Anonymous
• March 14, 2010

Phenytoin for Seizures "I have been taking Dilantin for a few months now for both petit mal and grand mal seizures. I have experienced 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."

• kim...
• Taken for 5 to 10 years
• February 23, 2014

For Seizures "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."

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

Phenytoin for Epilepsy "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 for Epilepsy "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."

• Joh...
• Taken for 10 years or more
• April 19, 2021

Phenytoin for Seizures "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 bedtime. About 10 years later, I started having what are called déjà vus 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?"

• Anonymous
• Taken for 10 years or more
• August 28, 2024

Phenytoin for Seizures "Dilantin has been the medication that all of my doctors have fallen back on when nothing else helped me with tonic-clonic seizures. No side effects for 48 years, 400-500 mg daily, no negative side effects, and no contraindications."

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

Phenytoin for Epilepsy "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."

• jen...
• April 6, 2008

Phenytoin for Seizures "I have been on this medicine for almost 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 drive or even work. Since on the meds, I have been seizure-free and living my life."

• San...
• October 13, 2009

Phenytoin for Seizures "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)."

• AKR...
• Taken for 1 to 2 years
• June 7, 2017

For Trigeminal Neuralgia "I am taking Dilantin and Tegretol for trigeminal neuralgia. I had what they called breakthrough pain, and that was when my neurologist put me on Dilantin. I have been on both for close to a year or so now, but I am finding out that I seem to be reacting to both or one, but I do not know which one I am reacting to. The pain is gone, but I am fighting with the side effects of which drug I am unsure, as they have similar side effects."

• Att...
• Taken for 2 to 5 years
• October 2, 2014

For Seizures "Had grand mal and was prescribed phenytoin, slowly upping dose from 100x3 to 100x6. I was considered under controlled status, even having 1-3 seizures (partial complex) not during the month, but all the 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 a 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 unbalanced."

• DJT...
• Taken for 10 years or more
• November 17, 2019

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

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

Phenytoin for Epilepsy "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

For Epilepsy "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

For Epilepsy "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."

• Nic...
• Taken for 10 years or more
• March 13, 2024

For Seizures "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."

• Tim...
• Taken for 10 years or more
• January 31, 2024

For Seizures "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."

• kat...
• March 9, 2008

Phenytoin for Seizures "I have been on Dilantin since I was about 17. It has been working a lot better than the Depakene 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 controlled while on Dilantin."

• Max...
• Taken for 10 years or more
• October 30, 2023

For Myotonia Congenita "My brother and I both have Myotonia Congenita and were diagnosed around 8 and 10 years old, respectively. We were put on Quinine back in the 60s. It certainly worked, but the side effects were feeling super racey, hyper, and dry-mouthed, so uncomfortable that we had to lay down shortly after taking it before going to school. It'd be another 30 years of taking nothing till we were introduced to phenytoin. It took a good month before we noticed a difference - he was on 400mg and I 200mg - as his symptoms were worse due to alcoholism. The worse you treat your body, the worse Myotonia Congenital is, though it certainly made a marked improvement in both of our lives. I went off of it every 3 years or so (for a year) to see how my body would react without it. I'd get by, but the older I got, the more my Myotonia symptoms became pronounced. Now at 70, I've had to up the dosage to 300mg to avoid falls. Side effects? None. But that's not the case for everyone. I consider myself very fortunate."

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

For Epilepsy "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."

• Man...
• Taken for 10 years or more
• November 6, 2023

For Seizure Prophylaxis During or Following Neurosurgery "My father took Dilantin daily for several years to counter seizures caused by brain surgery. It worked well for him, for controlling seizures. However, he did say that it had a very negative effect on his teeth. 'Dilantin makes your teeth fall out,' he said. So, there's that, I guess."