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User Reviews for Phenytoin to treat Epilepsy

Also known as: Dilantin, Phenytoin Sodium, Phenytoin Sodium, Extended Release, Phenytek Di-Phen

The following information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

Phenytoin Rating Summary

User Ratings
10
35% (11)
9
16% (5)
8
16% (5)
7
16% (5)
6
0% (0)
5
0% (0)
4
0% (0)
3
6% (2)
2
3% (1)
1
6% (2)
7.7/10 Average Rating
31 ratings from 34 user reviews

Compare all 194 medications used in the treatment of Epilepsy.

Reviews for Phenytoin

Favidclu July 23, 2020

Dilantin (phenytoin): “I took Dilantin for 40 years. I am now 75years old and my blood pressure reading was 110/60 with a pulse of 55 last week at my annual physical. I have been off the medication for 25 years.”

10 / 10
Goofy3 · Taken for 10 years or more February 6, 2020

Dilantin (phenytoin): “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.”

10 / 10
Wendas · Taken for 5 to 10 years December 3, 2019

Dilantin (phenytoin): “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”

10 / 10
carolinus · Taken for 10 years or more October 15, 2019

Dilantin (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.”

10 / 10
Notmyname · Taken for 10 years or more October 9, 2019

Dilantin (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 8x more expensive. Now I can't find prescriptions that works.”

3 / 10
Anonymous · Taken for 10 years or more January 19, 2019

Dilantin (phenytoin): “I have been on it for 18 years. I now have pins and needle feelings everywhere. It is really hard for me to sleep. I am wondering if I should mention this to my doctor?”

Focal Epilepsy · Taken for 10 years or more August 20, 2017

Dilantin (phenytoin): “Evening, I have been on this medication since I was 12 years of age. Why do doctors or neurologists NOT tell you about Epilepsy? About the Half Life of Phenytoin, about Sudden unexpected death in epilepsy (SUDEP)? Those who have Epilepsy do not necessarily know or at all ANYTHING about that cause people in general think you are WEIRD. SICK?”

8 / 10
LJWeezie August 14, 2017

Dilantin (phenytoin): “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.”

9 / 10
stex · Taken for 10 years or more December 24, 2016

Dilantin (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 hell for all. The med can be good to stop nocturnal tonic clonics if you are having those, which are life-threatening. 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.”

3 / 10
CallinMrG · Taken for 5 to 10 years August 20, 2016

Dilantin (phenytoin): “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.”

1 / 10
Dr CK June 8, 2016

Dilantin (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 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.”

9 / 10
Ernesto Evangelista · Taken for 10 years or more October 3, 2015

Dilantin (phenytoin): “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.”

9 / 10
Chris Lab December 20, 2014

Phenytek (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.”

10 / 10
oneluvforlif July 10, 2014

Dilantin (phenytoin): “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.”

7 / 10
wear May 6, 2014

“I have taken phenytoin for nearly 3 years . I am now on 500mg which does concern me even though it controls my seizures really well. So far I have swollen gums and some memory and motivation problem, although I am 58 so that might account for that.”

8 / 10
Iano · Taken for 10 years or more March 19, 2014

Dilantin (phenytoin): “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.”

10 / 10
FRED/ December 29, 2013

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

8 / 10
coco 37 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 to the back of my head. I also have been having so really weird dreams. It is 3 in the morning here and of course I awoke with a headache and a slightly stiffer neck. ”

7 / 10
wiy · Taken for 10 years or more September 2, 2013

Dilantin (phenytoin): “It does do a good job, but I also take Depakote( 4,000mg) with Dilantin(500mg) and I still have seizures. The less active I am, the fewer seizures (grand mal).”

9 / 10
Chelle021012 · Taken for 6 months to 1 year December 7, 2012

Dilantin (phenytoin): “The first 3-4 days made me a bit groggy immediately after taking it, I couldn't drive. Within a week, I adjusted quickly.”

10 / 10
Anonymous · Taken for 1 to 2 years August 15, 2012

Dilantin (phenytoin): “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.”

7 / 10
Lizardoli · Taken for less than 1 month July 6, 2012

Dilantin (phenytoin): “It made me very sick. It caused a reaction of large hives and made me throw up.”

1 / 10
deb_kurikka January 5, 2012

Dilantin (phenytoin): “I have been taking Dilantin since late 1991. Started off at 300mg nightly and was increased over time to 400mg when fits became more severe anf frequent. While pregnant with my 3rd child in 2007, dose was increased to 500mg nightly. This dose was never dropped back after pregnancy ended. In June 2011, I underwent brain surgery to have the scarring causing my fits removed. So far, it has been successful. At 22, I had 2 lumps removed from my left breast, which thankfully turned out to be non-cancerous. But after finding a very noticeable lump in my left breast this year, I had a mammogram. The nurse found 22 lumps in total in both breasts! My GP is not concerned and tells me they are just little oil sacks, but lump is not shrinking.”

7 / 10
Kennybozzle August 29, 2011

Dilantin (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.”

9 / 10
K. John 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 300mg of phenytoin a day and went up to 500mg a day. First it was too little and then it was too much and really hurting my liver. Now I'm on 400-500mg 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!”

8 / 10

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