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User Reviews for Dilantin to treat Epilepsy

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.

Dilantin Rating Summary

User Ratings
10
38% (10)
9
19% (5)
8
8% (2)
7
15% (4)
6
0% (0)
5
0% (0)
4
0% (0)
3
8% (2)
2
4% (1)
1
8% (2)
7.7/10 Average Rating
26 ratings from 29 user reviews

Compare all 194 medications used in the treatment of Epilepsy.

Reviews for Dilantin

Favidclu July 23, 2020

“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

“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 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

“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

“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

“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

“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

“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

“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

“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

“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

“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
oneluvforlif 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.”

7 / 10
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.”

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

“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

“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

“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

“It made me very sick. It caused a reaction of large hives and made me throw up.”

1 / 10
deb_kurikka January 5, 2012

“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

“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
cindycrooks 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.”

mscamille 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.”

7 / 10
Anonymous November 8, 2009

“I've been on Dilantin for about 20 years and it works for me.”

8 / 10
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.”

10 / 10
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.”

2 / 10

Learn more about Epilepsy

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Symptoms and treatments

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Mayo Clinic Reference

ICD-10 CM Clinical Codes (External)