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Comment from: 25-34 Female on Treatment for 10+ years (Patient) Published: August 04

I've been taking Dilantin, and tegretol for the past 11 years. Only recently did i find out from my new neurologist that Dilantin has several long term side effects. I haven't had a siezure for 2 and half years but i'm changing to a new medicine because i'm starting to show side effects of the long term use. Small tremors, which could be worse if i continue taking the medicine. Also I was told that in long term use it detiriates the back of the brain. I've also be showing symptoms of that, dizziness and trouble with motor skills. The medicine has worked well for me, but my overall experience is very bad. I wish someone would have told me about the side effects earlier so i could have started new medicine and caught these side effects before they started.

Related Reading: dilantin | tegretol | tremors

Comment from: 007, 25-34 Female on Treatment for 5-10 years (Patient) Published: September 11

I began taking Dilantin late in the year of 1994 at age 14 I continued to take the three times a day dose for 5 years, after a discussion with my neurologist we decided to discontinue treatment. The medication worked, however I had only ever experienced 2 gran mal seizures, and haven’t had another since 1994. There have only been 2 notable side effects that would make me not take this medication again if needed. The dental problems I have developed over the years despite excellent oral hygiene, and erectile dysfunction, I haven’t been able to maintain an erection since becoming sexually active. I hope this review is helpful to any one thinking about starting this medication.

Related Reading: erectile dysfunction

Comment from: Patsyj57, 55-64 on Treatment for 10+ years (Patient) Published: August 12

I had a head injury in a car accident. Shortly after that I started to have grand mal seizures. I started taking Dilantin at the age of ten. I am now 63 years old and haven't had a seizure in 35 years. Once I started taking my Dilantin faithfully. I haven't had a seizure. I can never miss a dose, or I start showing problems. I also cannot take the substitute for Dilantin. It does not work.

Related Reading: head injury | seizure

Comment from: antigeneric, 45-54 Female on Treatment for 10+ years (Patient) Published: August 03

I became a traumatic epileptic in 1993. The acccident and its related health issues were and have been fully covered by my auto insurance. While taking Dilantin I experienced side effects, but was as satisfied as one with my condition could expect. However, here's the rub. When my insurance company insisted that I begin being admin-istered only the generic form, PHENYTOIN SODIUM EXTENDED, I began having seizures on a regular basis. I am now in a three way struggle with my neu-rologist and the "money boys". Anyone else having trouble with 'generic' Dilantin???

Related Reading: phenytoin

Comment from: Jerry850, 55-64 Female on Treatment for 5-10 years (Patient) Published: May 26

At age 62 I had a small seizure while reading the newspaper. It was my first. I was put on Neurontin but had another seizure 2 months later, so I was put on Dilantin. I went without seizures for 5 years, but I had a small one in 2007.

Related Reading: neurontin

Comment from: hulse27, 25-34 Female on Treatment for 10+ years (Patient) Published: May 09

I have been taking Dilantin for 17 years and have had dozens of seizures yet! I started at 300mgs a day up to 600mgs a day and have felt nothing,but dizziness,anger and major depression. The depression come in the morning, as soon as awake which turns to anger mixed with depression and I start having delusions about "Equaling the OD's", (using any means necessary) and they all seem to be violent acts ending with suicide to prevent any further depression or memory of these prior issues.

Related Reading: dizziness | depression | suicide

Comment from: 45-54 Female on Treatment for 10+ years (Patient) Published: October 30

I started taking this medication because of seizure disorder for cycle accident in 1978.It was made manditory by the department of motor vehicles to recieve a drivers license. After taking this medication for 23 years council had informed the courts that this medication placed the public at large in danger and i should not operate a motor vehicle. How then are people with a seizure disorder around 2% of the population being fairly treated? How is having a disability now placing this portion of the population at risk? I was only trying to maintain a valid drivers license and stay in compliance with requirements imposed on myself. To provide for my family and there needs.

Comment from: Kelley, 45-54 on Treatment for 10+ years (Patient) Published: July 14

I was taking before I had surgeory to remove part of a tumor in my left temporal lobe. Before the surgeory it did not clear the seizures. Once I had the surgeory I never had another seizure. I am still being told that I have to take 300 mg a day. I was down to 130mg for a year and still have not gotten a seizure. I am having to also take depression medications because of the side affects of dilantin. Neither of these are covered by insurance. I feel I am losing my money for nothing.

Related Reading: seizure | depression | dilantin

Comment from: 55-64 Female on Treatment for 1-6 months (Patient) Published: March 10

My father had been taking this medicine for approx 2 months. He had a SEVERE allergic reaction that was caught on time. He is now full of internal blisters (esophagus, mouth, tonsils). He is in a great deal of pain and his skin is severely BURNED. He may need to get transferred to a burn hospital in San Antonio, TX. Has anyone ever reacted this way?

Comment from: Cowgirlup, 35-44 on Treatment for less than 1 month (Patient) Published: February 01

I am taking extended Dilantin, my appetite is gone, nausea is here and so are migraines! I am taking the pills to please the Neurologist AND DMV. Well ok family too but am not convincinced I need them. I am dizzy from them all of the time and feel out of sorts. And I can't seem to quench my thirst. To boot I have had a gastric bypass so I shouldn't BE on anything extended as I don't absorb extended anymore because things pass thru my system too fast AND the last thing I need is a smaller appetite!! I already eat the serving of an egg as it is! This is all two weeks old for me and I spent 4 days in the hospital over my grand mal with all normal results of course and a quarter bit off tongue! Could stress do this??

Related Reading: dilantin | stress

Comment from: g, 19-24 Female on Treatment for less than 1 month (Patient) Published: July 30

I have constant shaking and it causes me to stutter

Comment from: rose, 55-64 on Treatment for less than 1 month (Patient) Published: June 24

This medication knocked me out - onto the floor, unconcious and gave me open itching & painful blisters on the trunk of my body in the front & back. This happened within 3 days of taking the pills. I have had pituitary problems since the knock out.

Comment from: goodtimin2, 65-74 Female on Treatment for 10+ years Published: January 04

In 1982 my wife suffered a TBI from an auto accident. She has had epilsepy since then and has always taken Dilantin; currently 100 mg 4 times daily. She also took Tegretol, but the side effects were so bad: balance control, slurred speech, double vision,etc that finally a very informed neurologist switched her to Keppra. Wow! What a great difference. She now takes, in conjunction with the Dilantin, 3,000 mg of Keppa each day (4x750). A lot of pills - but they work and the Tegretol side effects are gone. Now...Our insurance only cover 30 mg tablets of Dilantin which would require her to take over 83 tablets of Dilantin weekly compared to the 25 she now takes of the 100 mg dosage. Not fair - not realistic. Solution? Rather than paying out of pocket $62.50 for 100/100mg at our local pharmacy we order online from Canada; 400/100 mg for $59.00. Problem solved. BUT we always buy the actual Dilantin, not the generic. Living out in the boonies like we do where you either drive 30 some miles to the nearest medical facility or take your chances with 911 and the local volunteer fire department medics; we choose not to gamble with the generic after reading all the negative reviews. We also keep an emergency Diastat close by if needed. Hope this review is helpful.

Related Reading: tegretol | double vision | keppra

Comment from: Sandilou68, 65-74 on Treatment for 10+ years Published: May 07

my mom has been taking this since 1980's. she now has non-hodgkins lymphoma at the age of 68. i do dilatian is the reason for her illness now.

Comment from: for ever curious, 55-64 Female on Treatment for 10+ years (Patient) Published: April 22

I am 60 years old and have had 10 grand mal seizures since the age of 22. I've been suspicious that the side effects have very definatly affected my quality of life. Lack of concentration have bothered me for a long time as well as the usual swelling of gums. In all that time I have considered something else, but what? Last weekend I was involved in a minor car wreck and was charged with a DUI for not passing the field sobriety test. I'm sure its because of the meds. I'm facing a very costly defense to get the DUI dismissed. Has any one had a similar eperance? In general the medicine seems to keep the seizures from happening but has affected my general cordination and cognative processes I'm sure. Dilantin is not something to mess with.


Epilepsy: Symptoms, Causes and Treatment See Slideshow
Comment from: pinky, 65-74 on Treatment for less than 1 month (Patient) Published: August 03

my throught and tunqe are sore and have the shakes bad

Comment from: krftwrx, 35-44 on Treatment for 1-2 years Published: December 04

I have been very please with the Dilantin my mother takes, the capsules and the oral suspension; total length of therapy has been two years with no new seizure activity. She made the switch to the suspension 4 months ago and now has a complaint of her lips and mouth burning. She has lost her sense of taste, too. The switch was made because she was not able to swallow the capsules anymore because they felt like they were getting stuck in her throat. The powder inside the pills actually came up when she had a coughing spell. Anyone else experienced these things before? I don't understand why these symptoms appeared after such a long period time. I appreciate any insight into this matter.

Related Reading: dilantin | seizure

Comment from: Danny Hatt, 55-64 Female on Treatment for 10+ years (Patient) Published: May 02

I had my first seizure when I was 20. As long as I took my meds everyday, once a day, i was great. i am now 59. A brain tumor has appeared and I had surgery. i am now trying to fix the dosage level of the Dilantin. The doctor and i are discussing if the tumor is 40 years old and we think so. Anyway i am having a hard time to readjust, but hopefully will.

Related Reading: brain tumor

Comment from: John, 45-54 Female on Treatment for 10+ years (Patient) Published: March 02

I had my first seizure around age 25. I opted to wait for a second seizure before starting on medication, and ended up only having to wait a few months. I've been almost seizure-free since then - my lone episode happened after I had become lax in following the prescribed dosages, and my blood level fell quite low. Since that third seizure, though, I've been more diligent about following the regimen. Results are all positive. In addition to controlling my seizures, I've been pretty much free of any adverse side effects. I am active and fit which probably helps.

Comment from: Buba Gone, 45-54 Female on Treatment for 10+ years (Patient) Published: December 30

I've been taking Dilantin for 37 years. Like others, the generic version was not as effective and I switched back. With my insurance, the generic version would have cost me $10 a month but Dilantin cost me $60 but it's worth the extra expense. I take 400mg a day at this time. There have been some side effects like headaches but all in all, Dilantin has allowed me to live a very very normal life. I've had one Toxic episode where the level got to high in my system. I was taking it with Phenobarbital but have transitioned off of it and I'm now taking Vimpat. The goal is to transition off the Dilantin or at least to a lower dosage.

Related Reading: phenobarbital | vimpat

Comment from: morag, 55-64 on Treatment for 2-5 years (Patient) Published: August 29

My white blood cells continue to drop, and my dr has attributed this to Dilantin. Perhaps there should be a limit to its use (I have an Astrocytoma and it caused a seizure for 45 mins and had to be comatosed. I was initially on 600mg but my liver was so toxic I am on 300mg and have been for 14 months

Related Reading: liver

Comment from: phreedo, 25-34 on Treatment for 1-6 months (Patient) Published: March 18

Currently taking 200mg Phenytoin (ext) twice a day for idiopathic epilepsy. I haven't had a seizure but I get frequent dizzy spells and twitches, loss of concentration and appetite. So far though, its better than having a Grand Mal seizure every week or so.

Related Reading: phenytoin

Comment from: tsbrock, 55-64 Female on Treatment for 2-5 years (Patient) Published: September 18

Dilantin has work to prevent seizures since I had surgery to remove a golf ball sized tumor in 2007. One of the frustrating side affects I have had from Dilantin are "flu like" symptoms that occur on a very regular basis every 3 or 4 weeks. The symptoms are bad the first day but lessen over the next 2 or 3 days. Has anyone else had this type of side affect from taking Dilantin??? My neurologist isn't much help saying it could be the dilantin. My family doctor has given me blood chemistry test, uranalysis tests, etc. and all comes back fine. Interested if anyone else has had this type of side affect and any suggestions to lessen the affect?

Related Reading: flu

Comment from: Howard3, 55-64 Female on Treatment for 2-5 years (Patient) Published: September 17

I had a stroke in Dec 2006, and had my first Grand Mal seizure 5 months later. After that I had seizures every 6 months, almost to the day while the doctors slowly upped my dilatin doses to see what level I needed to have in my body, now at 430 mg's per day, I have been seizure free for 17 months. I also retired at about that same time so it may just be the lack of stress. I have noticed that I have become more agitated easily and I have a lot less patience with little things. But otherwise I have had no noticable side effects.

Related Reading: stroke | seizure | stress

Comment from: WorriedOne, 25-34 (Patient) Published: April 22

I have been on the medicine since I was 18 and I am now 29. It helps alot, BUT, after my dental visit I was told that it could cause a GUM DISEASE in my mouth and I could lose my teeth. This is the Saddest thing I have ever experience.

Related Reading: gum disease


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Medical Editor: John P. Cunha, DO, FACOEP

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