Dilantin and Dizziness: What Users Say

• NVR...
• Taken for 10 years or more
• December 20, 2016

For Seizures "Brain deterioration. I have been on Dilantin for over 40 years. Have just discovered Dilantin is the cause of numbness in legs, feet, balance, and walking control. How so? It's called cerebellar atrophy. That's where your cerebellum shrinks (in my case, about 40%). It will get worse if I continue to take it, putting me in a wheelchair. 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."

• Anonymous
• February 27, 2008

For Seizures "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 the emergency room 2 nights ago with skin rashes, painful gums, and painful eyes. The doctor checked my blood and Dilantin levels and said they were 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."

• com...
• June 12, 2010

For Seizures "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."

• one...
• July 10, 2014

For Epilepsy "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."

• Kim...
• Taken for 10 years or more
• May 5, 2020

For Seizures "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."

• cin...
• November 10, 2010

For Epilepsy "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."

• Jan...
• Taken for 2 to 5 years
• May 20, 2018

For Seizures "I've been on Dilantin for about 4 years now. I'm taking 900 mg per day. I experience tingling/numbness in hands and fingers. I get many more ingrown hairs on my face and in the public area, vertigo, but not as bad as the first 6 months of taking. I continue to have seizures, but the frequency is an average of 1 every couple of months. I'm taking Dilantin in combination with other drugs for seizures, which have changed. Dilantin has been the one that stays constant."

• Rog...
• April 18, 2013

For Peripheral Neuropathy "I was diagnosed with epilepsy at the age of 8 years old, I was put on Dilantin. When I was 65, my neurologist changed my meds 3 or 4 times, and I am now on Keppra twice a day with phenobarbital at night. I haven't had a problem in 6 years, but I developed neuropathy, which is a real pain. It makes me have balance problems."

• Pat...
• January 23, 2023

For Seizures "I have never had a seizure in my life. I'm 59 years old. About a year and a half ago, I started having what they called silent seizures. This went on for a year before they found out I was having seizures. I was having seizures every day. They put me on Dilantin for a year and a half. I can tell already the bad side effects - I've gone from 150 pounds to 93 pounds, falling, broken bones, walking around like I'm drunk, but it did stop the seizures."

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

For Epilepsy "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."

• men...
• June 7, 2008

For Seizures "I have tried several anti-convulsant medicines, even had combinations before. Dilantin provides better results for me among all. There were a few false side effects like rashes, constipation, 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."

• msb...
• October 16, 2009

For Trigeminal Neuralgia "Stops the pain, but makes me too dizzy to function. My doctor also doesn't like the long-term effects on the cerebellum."