DILANTIN Reviews (PHENYTOIN SODIUM)Average Rating: 3.5 (185 Ratings)Filter ResultsCompare DILANTIN with similar:
Type: Rx Drug
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Results are sorted by Date added. Key to Ratings: 1=LOW (I would not recommend taking this medicine.) |
More on DILANTIN: Reviews Summary | Drug Safety Information
| RATING | REASON | SIDE EFFECTS FOR DILANTIN | COMMENTS | SEX | AGE | DURATION/ DOSAGE | DATE ADDED |
| 3 | Gran Mal & Simple Partial Seizures | Aches, pains in arms, legs, shoulders. Bottom of feet hurt/numb. Tired, little ambition, confusion, memory problems, arthritis symptoms. | I am taking 300mg/day of Phenytoin. I am not in theraputic level, but it controls seizures. All Gran Mal seizures happen at night. Sleep apnea is possible contributing factor if I sleep on my back. Stress is definite contributing factor. | M | 50 | 5 years | 7/29/2006 | 5 | epileptic-grand mall | nothing noticable until doctor recently said I had bone loss, but I have been taking dilantin for 50 years. only 200mg a day This drug stopped my seizures for the last 40 years except when I went off the drug as a test, I had a seizure in about 3 weeks. | This drug gave me a life that I thought I was loosing at age 13. | M | 65 | 50 years | 7/13/2006 | 1 | Dilantin Linked to Stevens Johnson Syndrome | | 6/30/2006 | 4 | Grand Mal Seizure | Short and long term memory loss, to include losing details of major events. In fact, I can't remember both a recent Josh Groban and a Celine Dion concert. I remember being there, I just can't remember any details. I am often unable to remember the names of people that I work with 3 times per week, despite essentially chanting their names over and over to prevent this. Tremors, extreme fatigue despite adequate sleep of 8-9 hours. Overgrowth and recession of gums. | I am a nurse practitioner and I know that there are better choices out there for me. Still, I believe, as does my neurologist, that if I am going to try to change medications, I need to not be behind the wheel for roughly four months. That opportunity will not happen until I retire. The alternative is much worse, and I know that. | F | 42 | 9 years | 6/3/2006 | 4 | Tonic-cloinic seizures | Sometimes side effects are difficult to assign to just long term Dilantin alone. I'm 59 years old with neuronal damage to my brain's left temperal lobe. In the past,I have also taken phenobarbital (over 40 years)with Dilantin but have switched to Mysoline (which is metabolized to phenobarbital and another anticonvulsant drug). My current side effects are: 1)increased hepatic enzymes, and 2)osteopenia. I have a slight memory loss but nothing preventing me from becoming a research scientist and making the best out of life. Also have something unique called plantar fibromytosis(build up of tissue along foot ligaments) making it hard to walk at times. Occurs in 0.05% of the males taking Dilantin. I've had most of the side effects noted on this webpage, but as long as you can remember you spouse's (and your)name, the memory lapses may be due to other factors (eg alcohol intoxication thus killing neurons) No gingivitis, just the opposite, which I believe is due to overzealous tooth brushing. | Take 400 mg Dilantin and 750 mg Mysoline daily in 2 divided doses: 200 mg Dilantin at bedtime and 200 mg in the AM. I've noted that ageing will limit (eliminate?) seizures probably due to you settling into a daily routine. Stay alway from alcohol and get plenty of sleep. Focus on the chores at hand. Train your mind so that you don't forget the major(and not the minor) life events . Prevent stressing yourself at work or play and keep your self esteem high! | M | 59 | 50 years | 5/25/2006 | 1 | epileptic seizures | I had my first seizure when I was 14 years old. I was perscribed 30mg phenobarbital. My second Gran mal seizure, they added 100mg of dilantin. From there on, each time I had a seizure, my neurologist would just increase the dosage until my body would adjust to the level and surpass it. I would then have another gran mal seizure. Finally I was taking 150mg of phenobarbital, 500mg of dilantin, and 1250mg of depakote daily. The dilantin was making me very drowsy, swelling of the gums, irritability. During school years, many teachers would pull me aside and tell me I better not show up on campus stoned again or I will be suspended. The only side effect that was ever explained to me was after I was on the medications for 9 years and that was the dilantin and phenobarbital together rob your body of its calcium and vitamin D. My mouth is living proof. 5 bridges, over 15 root canals, numerous teeth that holes rotted away from the inside out. By the way I forgot to mention that I have | Just recently I was admitted to the Dept. of Neurology at USC for Video Telemetry. The reason behind this move was to record a seizure on computer and localize exactly what part of the brain is causing the seizures. Then the neurosurgeon would go in and cut that part of the brain away-thus eleminating the need for any medications. In my case, it turns out to be over 60%. Surgery is out of the question. Now we are back to russian roulet with the medications. The most current are Topamax and Lamictal. The neurologists speak very highly of these. They also tell me that I should have never have been put on dilantin. Now I am basically addicted to it after taking it over 26 years. I have been searching for an attorny to handle the case, however, I have had 11 rejections. CAUTION: TALK TO YOUR DR. ABOUT MYOCLONUS AS A SIDE EFFECT FROM DILANTIN BEFORE IT IS TOO LATE. All through the years what I thought were petite mal seizures, were in fact myoclonic attacks. Even my neurologists di | M | 42 | 28 days | 5/22/2006 | 3 | Brain Tumour removed | I feel the tablet has slowed down my recovery although i knew i had to take it at the time after my surgery i am now being weening of it after 18 months and am hoping my memory and slurred speech, headaches, coordination, and insominia will improve. Is there anyone out there tha can aomment on hoe they went after they stopped taking it? | If after my surgery it prevented me from having siezures I was glad to take it. Bit over time i felt it was slowing me down as the tablet seemed to take its toll. I am so lucky to get to the point where they feel i am in no danger of having a seizure. | F | 43 | 2 years | 5/13/2006 | 4 | Partial Complex Seizures | Fatigue, memory problems (long and short term). Loss of Bowel control? | M | 37 | 8 days | 4/24/2006 | 4 | benign brain tumor(being monitored) | - drowsiness was the first noticable one, and probably most prevalant - loss of concentration, focus, and motivation - feeling of "emotionless" states, feeling indifferent to major happenings in my life (either good or bad) - definate loss of co-ordination (state soccer player) now I'm struggling at local level - weight gain (do to lack of energy to continue sport), had very high matabolism but seems as though dilantin has effected it quite a bit - stress related "auras" (mini-seizure) brought on by long work hours - slight gum decay (swelling of the gums) - depression - adverse reactions to alcohol (only 1-2drinks), result in stomach pains, headaches, feeling of unwellness, as such I have gone from a regular drinker to maybe 5 drinks a month | - must say sleep has not been a problem on dilantin, if anything the sleep that I do get is deep and uninterrupted - no real hair gain - has resulted in no grand-mal seizures since first taken | M | 23 | 14 months | 4/15/2006 | 3 | Complex-partial/ tonic clonic | peripherial neropathy,problems spelling,word find,very tired all the time,my hands shake(that just started)moody(I think because Im tired and not myself),Gums bleed | I just had my first seizure in Nov o5. They tried to take me off dilantin because I am on Topamax too,when I got to 100 I had a breakthrough, then again because of sleep deprvasion.I am on 400 now and I can't wait till I get use to this med.I still feel my aura some times and I am scared. But no seizure on 400. I am still new to all this stuff but the vitamin advice will help.I remember my dreams/halucinations with my seizures,and they are scary. anyone else? | F | 36 | 5 months | 3/22/2006 | 5 | Seizures (due to TBI) | As time has passed (16 yrs) on Dilantin I have had an increase in numbness and tingling in legs and feet. Neuro doc says it's from long term Dilantin use. I am currently in menopause as of around May 2005. It was around this time that I started having problems with keeping a steady lvl. It either is in the toxic range or bottomed out...no happy medium. As a result of this I have spent close to 3 months in hospital with half of that in ICU on a vent. I am extremely curious as to whether there has been any sort of study done on the effects of menopause and Dilantin effeciancy. | This drug has been a wonder drug for me for many, many years. | F | 47 | 16 years | 3/13/2006 | 4 | Several Gran Mal Seizures | The most noticeable side effects have been fatigue, and memory loss. Short term memory loss seems to be worse than long term. I think adequate sleep (8 hours, plus exercise helps). I have been on 300mg, taken prior to sleep, for the whole time. When I first started taking the drug, I had some shaking in the hands, but over time that has gone away. I have not had any seizures since taking Dilantin. One side effect that I have had for some time that I have not seen mentioned is constipation. Although it can be handled, I did not have any constipation problems prior to Dilantin. Regarding hair growth, I have had some on the ears ...too bad it can't be directed to the scalp. | M | 53 | 19 years | 2/26/2006 | 2 | Epilepsy | Many-dizziness, confusion, lack of balance, darkened body hair, increased hair growth, loss of memory, difficulty thinking clearly, many reactions with other drugs, receding gums, seizures controlled but I had seizure "auras" daily. | The drug was very effective in controlling seizures but the wealth of side effects made it unrealistic to stay on the drug. I was on Dilantin for 6 years and most side effects were severe for the entire time. I had only limited memory, concentration etc for 18 months after I started the drug. In time, the severity of the side effects did decrease but they always affected my life greatly. I changed drugs at age 22 to trileptal and most side effects are gone (some remain but are far less intense). Dilantin was a great started drug for me when I was diagnosed and the severity of my epliepsy was unknown but I recomend changing to a long-term drug as soon as you can -- you don't have to live with the side effects! | F | 24 | 6 years | 2/21/2006 | 5 | siezures (neurocardiogenic syncope) | I usually have to keep my level on the high side of the theraputic range (about 20-22) so when it goes too high I usually get memory problems and Coordination problems. It's hard to tell if I am getting hair growth because I am italian. But the coordination has definetly been a big issue, which I noticed quite a bit out on a boat. The memory problems have hindered me a little bit, since I am in grad school but I've learned that if you really wotk on it, it is possible to train your memory better in spite of the medication. Problem with side effects is unless it's obvious, you get the med student sydrome and feel you have each thing you see on the list. | My problems may be casued more to a problem in the cardiovascular system, However, since I changed from tegretol to phenytoin I have only had siezures due to the change in medication. It really has been a great medication and allowed me to stop worrying about when my next seizure is going to be. | M | 28 | 2 years | 2/1/2006 | 5 | 2-3 Seizures | I can relate to many of you. I have been on Dilantin for nearly a year now and I thank the gods it has set me straight. For the past 7 years of my life I suffered from significant sleep issues. After about 6, combined with high levels of stress, burning the candle from 2 ends, and one time a nasty flu, I had a few seizures over the course of 3 months. 2 were with one day due to that fact that I hurt my back during seizure #1 and could not sleep following the episode. I have been seizure free since I started taking dilantin. I definitely have side affects that seem to line up with many of you. Some I am sure are just due to that fact that all the years of abuse have affected me neurologically. The effects that bother me are poor concentration, memory issues, an occasional frustrating search for a word, and perhaps that is it. All in all, I can say reduced stress lessens these side effects and they have gotten marginally better over time. The first 4-6 months where difficult. I truly f | M | 29 | 1 years | 1/22/2006 | 5 | 2-3 Seizures | I can relate to many of you. I have been on Dilantin for nearly a year now and I thank the gods it has set me straight. For the past 7 years of my life I suffered from significant sleep issues. After about 6, combined with high levels of stress, burning the candle from 2 ends, and one time a nasty flu, I had a few seizures over the course of 3 months. 2 were with one day due to that fact that I hurt my back during seizure #1 and could not sleep following the episode. I have been seizure free since I started taking dilantin. I definitely have side affects that seem to line up with many of you. Some I am sure are just due to that fact that all the years of abuse have affected me neurologically. The effects that bother me are poor concentration, memory issues, an occasional frustrating search for a word, and perhaps that is it. All in all, I can say reduced stress lessens these side effects and they have gotten marginally better over time. The first 4-6 months where difficult. I truly f | M | 29 | 1 years | 1/22/2006 | 5 | complex-partial seizures | Initial unsteadiness on feet and appetite suppression. | I found it very important to take a vitamin B complex supplement to control the fatigue and depression that long-term use caused. Even after a temporal lobectomy Dilantin is the only drug that controls seizures and has bearable side-effects. | F | 47 | 15 years | 1/6/2006 | 4 | Epilepsy - tonic-clonic (Grand Mal) | Not sure if these are side effect, since when I mentioned them to the last neurologist I saw, she essntially discounted them. But for the past 5-10 years I have difficulty "finding" words, or use the wong words for things. I also have problems with long-term memory. Whole events are gone. Like my visit Blackpool when I was 16 - I only know I've been there because I have seen photos and/or my husband tells me about it. Even when told about it, nothing comes back. Facial hair - not sure if this is the same type of growth other people are experiencing - mine isn't all over my face, but like "whiskers." Waxing/plucking looks after it, but it's not very attractive in a woman. Wonder if changing drugs will reduce this. Mentioned to my GP that I'd been getting something like "hot flashes" and he did say that chemical changes in my body if I am peri-menopausal could definitely affect Dilantin levels/effectiveness. | Developed epilepsy at the age of 7. Early on was on Phenobarb and Dilantin, later switched to Dilantin alone. At about 15yo tried Depokene(?) Depakote(?) (can't remember which) but it was decided Dilantin was best. Dilantin has controlled my seizures for over thirty years, but I find that in the past few years it isn't as effective as it once was. I get tremors and focal seizures more, and have come close many times to having tonic-clonic seizures (most times going to sleep for a while helps.) At this point, my Dilantin levels are high - according to my GP, creeping into the range where liver toxicity becomes a worry - my liver function has been checked and so far it's ok. Currently I'm waiting on a consult with a neurologist to look at possibly changing to something else. Would love to hear from others who may have experienced decreased effectiveness as menopause approached. Did you change drugs? To what? And would also like to know if anyone else has had long-term memory prob | F | 38 | 32 years | 10/8/2005 | 4 | Epilepsy | Beginning of gum overgrowth. Dentist tells me to floss and massage gums every time I brush. If gums get too big, they will go in and cut some of the gum back. I have a memory problem. Nothing bad though. I played Jesus in a play and had no troubles memorizing over 500 lines. | I take 600mg all at night right before bed (Started out with 300mg when first diagnosed 18yrs ago). My seizures are controlled with Dilantin. I am able to drive, go cycling, camping, fishing, and several other outdoor activities. I was in Martial Arts and was a gymanst in High School (2nd in State). My GPA was a 3.8 at Texas State Technical College and a 4.0 GPA at Western Technical Institute. I am in the process of hopefully becoming a City Carrier for the Post Office. I have passed all tests and just waiting to see my doctor, so he can fill out some forms for me. Benefits with the Post Office are great! | M | 33 | 18 years | 8/9/2005 | 4 | benign brain tumor, removed 1995 | if the level gets too high- vertigo, blurred vision, drowsiness, imbalance. Otherwise, no noticible effects | This medication required diligent monitoring. If the level in the blood changes too quickly, you can experience many side effects. I was fine for several years at 3x100mg/day. Several years ago, I started a diet to help me gain weight, and threw my level off, resulting in a seizure. Recently I've been sick and lost a lot of weight, throwing off my level. Readjusting requires frequent blood tests. | M | 31 | 11 years | 8/5/2005 |