Generic Name: Dilantin (phenytoin)
Dilantin Reviews
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."
For Epilepsy "I've been on Dilantin/Phenytoin since 1955 (66 years), 100 mg 3 times a day. Also, phenobarbital 32.4, 3 times a day. Since the first year adjusting to meds, I have only had seizures if I have not gotten enough sleep. Driver's license - yes, since I was sixteen. I have had a few side effects that have been mentioned here, but none that really bothered me. Overall, I've led a very normal life, and I feel really blessed that I haven't had a chronic problem with seizures. Dilantin is a mainstay for me. All the best to everyone."
For Seizures "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 mals are history, and it’s been years since I’ve had a seizure. I take 200 mg Dilantin B.I.D. along with Phenobarbital 64.8 mg 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 me 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 be outstanding if the price can be reduced so other less fortunate individuals can have access to this great drug."
For Seizures "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 compensate with Trileptal, Keppra, Vimpat, etc. did not completely remove my seizures like Dilantin. My neurologist is transitioning me back to brand name Dilantin so my insurance will cover the cost."
For Seizures "Started on this med with phenob at age 12 due to grand mal seizure. Seizures stopped at age 16, but I am now 70 with no seizures since. Total of 58 years. It's 100 three times a day with phenobarb 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 5 mg every second day. Small price to pay for no seizures for 58 years."
For Seizures "I took Dilantin to control grand mal seizures for close to forty years. It worked fairly well for me, but it 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."
For Epilepsy "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."
For Trigeminal Neuralgia "I have been on this medication for years. I do not take it on a daily basis. When pain pills do not work as well, I take a Dilantin to help stop the pain. I have found that if you take any of the medications for this disorder, your body gets used to it, and you have to up the dose. I also take Ativan at night if I am not able to sleep because of pain, and I do not take it every night because my body will get used to it. This is the worst thing I think a person can get and have to live with because it is like getting beat in the face every day all day long. Oh, and do not have your tooth pulled thinking it will get better... because I have pulled all mine and still have the same pain."
For Seizures "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 100 mg 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 too 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."
For Seizures "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."
For Seizures "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 knew anything. Before any CT scan or MRI was performed, it was thought that the seizure was a result of contact while playing. After tests were conducted, apparently the cyst was a result of spinal meningitis from my childhood. I'm not a doctor, nor do I understand everything, but nevertheless, 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 a great life with Dilantin."
For Anxiety "My doctor prescribed Dilantin for anxiety and depression. It seems to work just about 60 to 70% of the time for both conditions. Other times I can't really tell the difference. I use 1 or 2 - 100 mg capsule(s) a day or only as needed. I like that it is not habit-forming and tolerance is not built up. Side effects need to be looked at, although I don't experience any serious adverse effects. Extra vitamin B-12 and folic acid need to be taken while taking Dilantin because it may cause a deficiency with these nutrients."
For Epilepsy "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."
For Seizures "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."
For Seizures "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."
For Seizures "I have been taking 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 phenytoin levels in my blood and therefore need to have regular checks. It is difficult to know whether I am underdosed or overdosed as my symptoms are similar for both."
For Seizures "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."
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."
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."
For Epilepsy "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."
For Epilepsy "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 nightmare for all. The med can be good to stop nocturnal tonic clonics if you are having those. 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."
For Seizures "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."
For Neurosurgery "I've been taking phenytoin for the past 8 months now as I had a bleed on the brain that caused me to fit. I've noticed that it's stopped me from having a seizure since the day I fitted. But ever since I've been feeling weak can't remember things from day to day and can't remember what I done like 10mins ago, I'm taking 300mg every night and I feel spaced out every day and can't be bothered doing anything I'm only 22."
For Epilepsy "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."
For Seizures "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."
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Related treatment guides
- Seizures
- Epilepsy
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- Seizure Prophylaxis During or Following Neurosurgery
- Status Epilepticus
