Drug Ratings for DILANTIN

Average Rating: 3.5 (151 Ratings)

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Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)   

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 4  nocturnal siezure Taking for 34 years and realizing that this is probably why my teeth break, tired all of time osteoporosis lower back. .restless sleep. Have chronic kidney and liver disease. Hep C in liver. Not caused by dilantin but dilantin determines how your liver filters other medications. The drug or cure for hep c is called interferon. Dilantin is not compatible and works against it. VA switching me ty o new anti siezure med called lev...... ?? (Dont have it with me now). But it goes through my kidneys so I can get rid of hep c. No siezures so far 1 month. M 54 10 years
 5  Brain tumors/epilepsy Hi, i've been taking Dilantin for 3 years since I was diagnosed. Recently my dr increased my dose from 400mg to 600mg daily. I have been feeling dizzy, off balance, foggy, I developed acne, my skin is pale, I cannot eat much, I fell down this morning and have been stumbling around. My dr thinks I may be toxic.. My advice to anyone... Trust how you are feeling on your dose, my blood work said I was at 4.8, but I had been off meds for almost a week. My dr said I needed the increase, and now I am trying to feel normal again because it was too much for me.. Ive been seizure free for years because of dilantin.. But this toxic feeling is scary.. Any abnormal feelings, call your dr asap!! F 30 3 years
 5  Brain Tumor/Seizure Disorder I have had almost no problems on this drug except for some bone thinning. Dilantin has allowed me to have a wonderful life, husband, daughter, career. I am dealing right now with a doc who wants to switch me because of the bone issues. Not sure what I will do, but really wonderful drug for me. As long as I take my pills I am doing just fine. F 43 20 years
500 1X D

 3  Epilepsy I had the tingling of fingers and feet. I also take 3000 mg of Keppra. I had a severe Grand Mal Seizure. My blood level was therapeudic. I guess my system has become immune to these 2 anti epilepsy meds. I believe the proper diagnosis if they been on this med for a long time is their bodies have become immune to this med. F 52 1 days
300 mg

 5  Epilepsy (Tonic Clonic) Tingling and numbness (Paresthesia) in my hands occurred in the last year. Two NHS Neurologists were convinced Phenytoin should be withdrawn as it was causing the Paresthesia. I had deep reservations so paid privately for a Parasitology test that revealed H-Pylori that causes a mayhem of symptoms including Tingling, Numbness, Reflux, indigestion, Irritable Bowel Disease and Ulcers. Dilantin/Phenytoin is well medically documented to deplete our body's stores of Vitamins B (especially B12) & D, Calcium and Magnesium. I implore patients with Paresthesia to insist their Doctors test them for vitamins and minerals deficiency before considering changing any anticonvulsant regimen. M 55 45 years
100 mg 3X D
 4  Seizure Twitching, head fog, fatigue I had a febrile seizure with high fever, another after a burn, and one after surgery. Every few years I have an EEG which has always shown some abnormal activity so Drs have kept me on Dilantin since I was about 17. Twice over the years I've come up toxic on blood work and had levels temporarily decreased. I've always considered the side effects worth being seizure free until this year. For the past several months I've been having trouble with being able to concentrate on things that require hand/eye coordination...like typing or sewing.. without developing a jerky muscle spasm. It also happens sometimes when the sun's extremely bright. It doesn't last long but when it does I have to stop what I'm doing and live in fear that it's a seizure coming on. I'm wondering if anyone else has this and possibly tried another med. F 66 50 years
100 mg 3X D
 4  nocturnal seizures Biggest side effect imo is face irritation (a feeling like your face is drooping), foggy mindset, 10 hour sleeping cycles, a feeling of anti social behavior because of low energy. Random mood swings I've been taking dilantin for 19 years now and I have to deal with it for the time being, otherwise I would have night time seizures (seizures that only happen when asleep). I would like to get on something else as I feel this prescription medicine has ruined many aspects of my life. I'm just so afraid if I change my medicine i'll have new side effects I will hate. Why drugs, why oh why? M 30 19 years
300 2X D
 1  Seizure due to heatstroke dizziness, memory issues, chest pain, rash on legs and stomach, sudden anger issues, crying all the time, easy bruising, vivid dreams, loss of coordination, forget words/names/places I had a seizure in my sleep because of a heatstroke and went to the hospital. The doctor put me on IV and sent me home with dilantin to take before bed. I didn't feel like the drug was helping at all so I went back to the hospital and stayed overnight for monitoring. Have been off it for 2 days and still feel dizzy/ light headed/ anxious. This drug should NOT be used for seizure brought on from heat stroke. Big mistake. F 20 7 days
300 1X D

 1  seizures I've been on it for a while,my new doctor told me that its short term use,i had a seizer in april have to check my level,if its not ok my doctor will refer me to another seizure doctor. M 33 5 days
 4  epilepsy dizzy, unsteady, weird depressing thoughts, anger, anxiety this is the only drug that has worked for my seizures. i hate it. however, it beats seizures. M 61 720 days
300 2X D
 2  seizure disorder I was fine on the old dilantin kapseal for over 10 years. when pfizer changed the formulation in 2008 all of my problems began. Even in my therapeutic range I had seizures.I tried other meds, Dilantin kapseals worked for me with no side effects, . Maybe that's why so many people are having problems with this drug. did your problems start after 2008 F 55 10 years
500 mg 1X D

 3  pettite mal seizures I experience few side effects similar to what people are stating. Little shaking in the hands, i feel rather dumb at times, little memory loss, and a fuzzy feeling at times. M 30 3 weeks
 3  undiagnosed seizure Though I am new to this medication and adjusting to the baseline feeling on this medication, there have been several noted side effects Troublesome memory loss. 'train of thought' issues, loss of concentration, hand tremors, bleeding gums and a worsening body tremor as I initially stretch in the morning. One side effect I have enjoyed is hair growth. My daughter noted that I am no longer bald. As it increases growth of facial hair I could see this side effect being troublesome for women My blood levels have failed to maintain within clinical levels which is worrisome. Working with neurologist to establish correct levels M 50 2 days
300 mg BID
 2  seizures When there are many other anticonvulsants available, its side effects make Dilantin undesirable and unnecessary. F 66 10 years
 2  PCSeizure Lack of focus, fuzzy feeling, tingling in hands and feet, issues with memory. While I'm sure this medication works well for others, it has been affecting be poorly, as I have been unable to work. If this happens to you recommed you do not wait as long as I did. The doctor has now put me on another medication which is working well. M 60 6 months
300MG 1X D
 2  seizures I feel lightheaded, unable to focus, fatigue, Some loss of balance, Some trembling of hands The side effects of this medication is worst than having the seizures themselves. I would not recommend it to anyone, my doctor Changed my medication two weeks ago and am no longer seeing these side effects M 60 4 months
300 mg 1X D

 5  head injury playing football numbness in feet, hard to focus in the morning until I get going, dry mouth and who knows what else. Have had epilepsy for 58 yrs and dilantin was the drug that really made me abel to function normally after going thru other drugs. Who knows what ailments I am experiencing now are due to the dilantin or old age. Taking care of teeth and gums, exercise, vitamin supplements and eating properly are the key to surviving. M 74 41 days
300 1X D
 1  Dilantin Memory Loss Bleeding Gums and Depression I found a good Doc and he took 1 look at my gums and took me right off this stuff and gave me a prescript for Phenobarbitol I take it at night only 100mg 2 pills before bed. I have taken it for about 25 years and felt much better F 63 7 years
1X D
 5  epilepsy some trouble gums but brush 3 times day gums are good ..sometimes feel little tired thank god they found a drug helped me dilantin in great F 25 15 years
500 mg 1X O
 2  Diabetes Extreme fatigue, headaches, unable to concentrate or remember things. I had seizures from low blood sugar associated with insulin use for diabetes. I would not recommend this drug for this purpose.I experienced a seizure from the drug itself, and was promptly taken off the medication. F 45 2 years
3X D

 1  seizures tired and sleepy, level were always high , admitted to the hospital for this since i have been taking this F 29 6 years
100 4X W
 3  Epilepsy Headaches, dizziness, drowsiness, tired all the time, hard to sleep at night, can't find the right word at times, problems with speech at times, overgrowth of gums, can't concentrate, some shakiness in hands. I think dilantin is good for stopping seizures, but the side affects are really bad. They seemed to take over my life more than the seizures would have. F 17 3 years
100MG 2X D
 5  Partial-Complex eplilepsy Tiredness, hair growth, continually worsening vision, decrease in bone density, Lately I have noticed my eyes are slow to focus which is kind of new and may be due to me not getting enough sleep also. I have been taking this for the past 18 years and have not had any real problems with it. I lead a relatively normal life, I am a Police Officer, have two kids and a wife and seem to do ok. M 25 18 years
350 1X D
 4  Petitte Mal Seizures Extreme fatigue, Light headedness, Nausea, Loss of balance, Dizziness I didnt know that I was having these seizures until one day when I went into a full blown Grand mal seizure while I was working. It started off as a severe head ache that last about 2 minutes, dizziness, nausea and a weird iron taste in the back of my throat. I was finally diagnosed that I have scar tissue on my right front temporal lobe from a old car accident where I sistanded from moderate head injury. F 26 3 years
500mg 3X D
 4  Idiopathic siezure disorder None until about three years ago: initial peripheral neuropathy in toes(now diagnosed as axonal degeneration / demyelinization), has now progressed to reduced NCV below the knee with loss of muscle tone; upper extremities not affected; now Vit B12 and D deficient; tinnitus with mildly impaired hearing (unilateral), now showing increased inflammation parameters, with unusually elevated Dilatin blood levels. In general, I tolerated this drug without side effects until about three years ago. As are many people, I'm uncertain as to the bioavailability of the new formulation, although I am also aware that this varies greatly between patients. Final comment: If nothing else works and side effects are minimal, the duration of use should be 5 years maximum for patients like myself (well-controlled idiopathic generalized seizure syndrome). There are a number of other equally good or superior AEDs on the market today. M 54 38 years
100 4X D
 4  Night time seizures only Reaction time is slower. Slurred speech comes and goes 3-4 times a month or more. Face irritation occurs (a feeling like your face is drooping). May have an effect on your extremities (hands and feet). Blood levels may be altered by medication. (Elevated liver enzymes, auto immune diseases). Effects are different for everyone, this does not mean everything I said here will happen, this is only from what I've experienced living on dilantin. I've been on dilantin for a little over 16 years and counting. Its helped me with my seizures at night. I have ones where they only happen at night in my sleep. I'm athletic and eat fairly well (semi vegetarian Is suppose lol) and in need for change. I'm done with doctors experimenting with my brain, late in this stage I just can't handle these side effects, it ruins a large aspect of my social life and I feel stupid around others when I'm not engaging quick enough in conversation. This medication is helping me control my seizures and I'm grateful for that but at what price? There are so many medications and dosages out there, I don't know where to look anymore. I simply want to feel "right" again. M 27 16 years
400 2X D
 5  epilepsy none M 52 25 years
1X D

 5  Epilipse I was diagnosed with epilipse in 1965 at the age of 18. The only side effect at that time was swollen gums in the mouth. Quite common as I understand. This subsided soon. I have taken Dilantin since 1965. I have been taking this once a day 3 100mg tablets before bed. I have had no side effects and my life was as normal as if I never had epilipse until June 2006 when I had a seizure. My doctor increased the dosage to 4 100mg tables , 2 taken at 11 am and 2 at 11 pm. I thought that was it for another 40 years until Thanksgiving 2009 when I had 2 seizures within 8 hours. My doctor added 2 500mg Keppra to the Dilantin. Then in Sept. 2010 , I had a mini mal seizure where I was out for maybe a minute. What is happenning to me. Is it just because I'm getting older or because I have been taking the medication for so long ? Also , my feet have become dumb over the last few years, like pins and nettles. M 63 45 years
2 100mg 2X D

 4  Grand mal seizures Delayed reaction times in thought. Some slurred speech -- maybe happens 2-3 times a month that I notice speech is slurred or that I can't think of the right word. DILANTIN has worked pretty well in keeping grand mal seizures relatively well controlled (about 8-9 seizures in 10 years), with all of those seizures coming when the therapeutic level was low. In fact, the dosage may have been increased during times when compliance was the issue rather than a breakthrough seizure, but it was hard to tell. Although the slurred speech is definitely a post-DILANTIN symptom it is really hard to tell with some of the memory/ delayed reaction issues. I definitely had some of those symptoms before diagnosis and also had insomnia issues as well. Was also diagnosed with sleep apnea, and with the wide range of problems that sleep apnea can cause it is hard to really pin down any of those symptoms on DILANTIN or epilepsy. The sleep apnea existed before the epilepsy and it's possible they're even related. I will go through periods of drunk-like and there are times I can be at work and close my eyes for a second and suddenly be in REM sleep, but it is still hard to tell anything if you're not getting sleep. I have had not had gum growth or recession. Overall, it's worked pretty well and unless I addressed the other issues of insomnia/ sleep apnea it's pretty hard to justify switching when I haven't had a seizure in 2 years. M 44 10 years
460 mg 1X D
 5  Grand Mal Moody and shaky as in motor skills. And a couple of much tolerable side effects. Was safe on this dosage for all this time.25 years. AFTER 25 years, All of a sudden had seizures and could not be left alone, had seizures to point of comeing out of them and not at all "knowing" I had lost conscienceness until later that day. Of course stopped driving all together. Was treated after MRIs and EEGs with Keppra and I did not respond to this at all. Unable to even be trusted to walk outdoors and cried as the episodes/ much pain continued. Was then given dilantin again but increased the dosage to 200mg twice a day. It has now been almost one year and a half, and can now hold my grandchild. I do have poor bone density but am treated for this. Praise the Lord. F 55 25 years
100 mg 3X D
 4  Seizure Disorder Poor concentration,retention and memory, word retrieval, slow learning capability I've taken Dilantin for 10 years. Had been seizure free until 12-23-10. Dosage was increased to 260 mg daily. The increase caused shakiness "dry mouth" and constipation. Dosage lowered to 230 mg, shakiness subsided, eventually "dry mouth" also. Originally, took Tegretol for 2 years. Too many digestive problems switched to Dilantin. Really drug resistant person but it's beats having a seizure, then not being able to drive for six months. F 65 10 years
200 mg 1X D

 4  Seizure disorder Clouded thoughts, trouble recalling names / recent conversations, short term memory issues, extreme drowsiness, vivid dreams, occasional disorientation, clumsiness, concentration issues When younger I did a poor job of taking my Dilantin regularly and experienced several seizures after missing days, but the past several years I've taken religiously and haven't had any issues. Dilantin has allowed me to live a normal life and drive, work, etc without constant fear of seizures, but not without some costs. I have definitely noticed that I'm not as mentally sharp as I was before I started taking it. I wasn't the most agile person before, but I've also noticed I'm significantly clumsier. I also will fall asleep almost immediately at night even when I'm trying to stay awake, sleep deeply through the night, and wake up very groggy in the morning. M 28 7 years
500 mg 1X D
 5  grand mal seizures M 41
500 1X D

 5  epileptic seizures My gums have receded. I have experienced no recent, significant side effects besides. Dilantin has kept my seizures well under control. I have been seizure free since 1996. Compared to the benefits, I find that, compared to the benefits, the side effects are minimal. M 62 53 years
100 mg 4X D

 4  Seizures Early on when determining the dose, I had issues related to dizziness and word retrieval. Even to this day, I had a friendly disagreement with my doctor who wants 400 mg per day to my 300 mg per day. On 400mg, I feel the above side effects which affect my livelihood and social interaction. On the dose I take, only once in a blue moon do I feel a slightly off balanced. I do know to take extra care of my gums and will take a bone density test when I turn 40. I love daily products so I don't anticipate this being a problem. My only additional comment relates to the one time in 18 years where I ran out of the medication. And in this instance, I took a little extra dose when I received the meds and this was not a good idea and the underneath of my arms swelled with bumps and lumps. M 39 18 years
300 1X D

 5   Speech, cognitive and balance issues, but see below. After two severe grand mals and a host of petites, focus seizures, involuntary muscle spasms I was given Dilantin. Efficacious dose [no seizures] turned out to be 400 mgs/daily. But still a mess. Speech, cognitive, balance,,, you name it. Went on Disability. Didn't drive for 5 years. Then saw an infomercial for a sub-lingual Vitamin B pill. It was pitched by a doctor we once knew in another town. Liked him. Trusted him. No mention of post-seizure, or Dilantin, but he claimed the stuff would help with the symptoms i was experiencing. What the hell. We ordered some with limited expectation. About 6 weeks later we realized my condition had changed very noticeably. A couple months later I went through an exhaustive [3 hour] eval and road test to determine if I actually was ready to drive again. Bingo! Not 100%, but I'm 73 and few in my group are. In the last year I've done all the driving on trips of 2500 miles, and several of almost 800 miles. No sweat. Every case is different but it's worth a try for anyone who's in comparable straights. Just be patient though. It takes a few weeks. It may not be easy to find, but anyone on Dilantin, considering another anti-seizure drug, or worried about long-term use must read the Jack Dreyfuss [the mutual fund pioneer] book: "A Remarkable Medicine Has Been Overlooked". I can vouch for the anti-depressant qualities. Jim M 73 10 days
 5  Life-extension purposes. No adverse side-effects whatsoever. I have taken this drug at 100 mgs daily for long spells but today take it occasionally especially if I am about to face some apprehensive social situation. It helps at maintaining one's composure. It also inceases one's stamina enabling one to do manual tasks without exhaustion. On intially taking it (the first 3 doses) I experineced a psychological high but thereafter no noticeable effect. My wife too takes it when feeing apprehensive or depressed but requires 200 mgs for her to notice its benefit. We self-medicate. M 79 16 years
 4  seizure disorder Hand tremors started after 10 years of use (worse with caffeine and low blood sugar); more hair on my arms than your typical woman; get very sleepy after 1-2 beers or glasses of wine on an empty stomach; forgetful with names, but this is part of aging for all of us! To encourage those who worry about long term use... Dilantin may be an oldie, but for me it has been a goodie at 300 mg/day alternating with 400 mg/day. I have climbed mountains, run a half-marathon, and not been cognitively affected at all. I am now working on my PhD in the top program in my field. Gums fine, bone density fine (with vitamin supplements and weight bearing exercise). I don't know what the future holds, but Dilantin has been a blessing and a constant for me over the last 26 years. F 33 26 years

 5  car accident head injury first time short term memory problem starts,super dose 600mg daily.burns like a bugger if it gets cot in your throat.bone and cartilage problems arise.muscle atrophy and constainly weak and tired this drug works to control seisures but not enough is said about the side effects.Personally i've uncovered my need to supplement vitamen D,calcium and just about any healthy food group because osteoarthriyis was discovered at the age of 45. At the age of 39 i was misdiagnosed with sciatia.Get more than one oppinion from a doctor as uncertain etiology after suffering for five years and one leg being an inch and a half shorter then the other.Yeah that coffe wake up trick is also shared.Two pots a day ,remain at 2- 300mg dosage Your damned if you do'nt take dilantin but the family doctor did warn me about a rash and proper dental care. M 48 24 years
 4  car accident head injury swollen gums,joint pain,lack of energy depression is rampent as life changed.acceptence is hard BUT i am happy to be alive pills work ,side sffects suck.I need a hip reconstructionfrom the cartlidge slowly breaking down.Short term memory loss as well except I blamed it on landing on my head,2 week coma,amnesia and being pronownced brain dead for 6 min.Thanks for giving me some insight about this drug M 48 24 days
 5  A.V. Malformation Tired as a result from taking Dilantin. Memory retention seems to be effected by the medicine. Numbness in hands and especially bottom of the feet. Concentrative ability noticeably effected at times. Tiredness countered by drinking coffee.(It works) (My case only): In an emergency situation, I have inhaled 1/2# 100mg capsule of Dilantin in order to stop a seizure. I have tried Dilantin under the tongue. It burns. Cold water used in conjunction with taking Dilantin has stopped an oncoming seizure before happening. A Cold towel around the neck-(loosely), and cold towel under the arm pits. Having a fan helps too. (oxygen) (Note): Age & condition are to be taken into account. Dilantin has saved my butt for 26 yrs. Even with all the drawbacks that accompany its use, How can I complain to much being still alive. M 52 26 years
 4  Asperger Syndrome - 9 yrs old Dilantin Infatabs were very easy for my 9 year old to take. REmained on this medication for 9 years. Good mood stabilizer for children. Made him more outgoing. M 17 9 years
 3  epilepsy multiple seizure types on normal drug level :I am tired and my thinking isn't efficient Memory slow it does impair my thinking process alot . Really bad gum over growth Extra growth of hair over legs and face which is not what a girl wants.And my eyes bother me don't focus as fast On toxic blood levels:Can't do nothing can't see nystagmus dizzy sleepy my head is floppy and I am completely goofy it works well in emergencies and neurologist are comfortable with it I don't like it I wish I don't have to F 19 years

 3  seizures tends to make me feel tired... Don't know if it is because of the benign brain tumor, but I have trouble finding the right word. Then after feeling tired all day, I have insomnia at night. Go figure. F 50 2 years

 4  choreoathetosis I've been taking dilantin for 25 years (started at 13) so it's difficult to distiginguish general shortcomings from negative effects from the medicine. Lack of concentration and coordination problems are two things I would like to attribute to dilantin. Maybe a slower thought process. I take half of what was prescribed to me (200 mg opposed to 400 mg) to reduce side effects and it's been an effective dossage. For the most part it's been a miracle drug but have alway been concerned about potential ill effects. Somebody recently told me they stopped taking the drug because of a whole litany of damaging effects including liver damage to memory loss to deadening of the nerves. I would like to experiment with a different medication. M 38 25 years
 5  unexplained tonic-clonic seizures swollen gums Dilantin has been great but I am now worried about possible long-term effects. My Dr. wants me to switch to Lamictal. I am worried because I have been seizure-free for so long and haven't had problems other than my gums. But I am concerned about cerebellar atrophy. Has anyone else switched medications and been successful? F 37 22 years
 5  Seizure Control Slight drowsiness, bad constipation, & intermittent (last for a few minutes every few days) uneasy dizzy feeling. Mostly these side effects were only during the first few months of taking this medication then subsided or learned how to control. Excellent medication that I am very grateful for as it has eliminated seizures for over 20 years. Very few side effects and this medication controls seizures for me even though my blood levels show that I am below the therapeutic level. I take 400mg of Phenytek (time released Dilantin) and my body must metabolize most of it as my blood levels are below theraputic....but it is still very effective and controls my seizures. No need for me to increase level and every time I had lowered my dose I have had a seizure. Early on I had some uneasy dizzy spells where it kind of felt like the earth was moving and I would get very anxious (sweaty palms, increase heart beat) but it wouldn't last very long. It was not so bad that it would affect my driving, walking, function or anything, just an uneasy feeling as I thought maybe it was a sign that I was going to have a seizure. Once I realized this feeling was from the medication and not a forewarning of a seizure then it didn't bother me. Mo M 42 22 years

 4  Grand Mal Nocturnal Seizures Tiredness or drowsiness, My gums are a bit swollen, have had periods where my speach was a bit slurred, itching of the face and neck may be an allergic reaction from dilantin or something else and peripheral neuropathy in both feet and lower legs Its good to have something that will control your seizures. The only thing I find a bit difficult to handle is the peripheral neuropathy, because I don't know how far it will advance. I am currently taking 600mg of dilantin one day and 500mg the following day. M 59 40 years

 3  Seizures Fatique, memory loss, lack of concentration and can't even read a book, falling asleep sitting straight up or at the computer during the day and then cant sleep good at night, the most I sleep is 4 to 5 hours per night. Loss for words, blurred vision, raises blood sugar, depression, dizziness. The One thing that is bothering the most now is a loss of feeling in my toes, completely numb. Loss my balance because of it fell down the steps because of it. Seems like the doctors just blow me off. DOES ANYONE ELSE EXPERIENCE THIS NUMBNESS?? SO FAR I AM ON 4OOMG. OF DILANTIN, 5MG OF KLONIPIN , AND NOW 1,000 MG OF KEPPRA. THE DOCTOR WANTS TO ADD ANTHOER MEDICINE TO TRY AND GET ME OFF THE DILANTIN. I AM NOT SURE THIS IS THE RIGHT DECISION. . I FORGOT TO MENTION THAT THE DOCTOR HAD MY LICENSE SUSPENDED BECAUSE OF ALL THIS. NO JOB, HOME ( LIVING WITH DAUGHTER_ F 55 15 days
 2  Grand-Mals Since 31 yrs old Massive backside headaches. Heart Flopping excessively. Feel heartbeats so strong up through the vessels in my high chest and neck & jaw. Feels like pressure wants to explode. Brain Fog/Memory Loss/Loss for words-embarrassing at work. Pain in chest and under left top arm. Severe weakness in muscles to where I drop things that are light or feel like a raggedy ann doll with no backbone to hold me up. Tingling fingers/feet. Breathe heavily. Sweats/Chills. Low grade fever. Eyes side to side. Dizzy. Not acceptable to work in. Seizures are better than working in these continuous side effects when job requires hard strong mind and body. Every Body is Different. What works for one may not at all for another. This does not work for me. The few Grand-Mals a year would be better to live and work with than these daily side effects, but I must keep my driver's license to work and live and I guess I'll have to find strength to live through the side effects. Must follow the rules of the world even if it hurts my body to do it. F 46 3 months
 5  seizure disorder I have taken 300 mg of Dilantin nightly for 36 years and been seizure free except for 1 seizure in the hospital after the birth of my first child; (I wasn't taking the Dilantin properly at the time because of my concerns about its possible effects on the baby...there were none.)I have had surgery on my upper gums twice in the past 12 years which was virtually painless thanks to my wonderful periodontist. I have short term memory problems and have recently started to have occasional tingling in my arms and hands. My neurologist has mentioned other, newer drugs that I could switch to but my attitude has been "if its not broken, don't fix it!" I also have refused to switch to the generic form of Dilantin despite having to pay more for the brand name.I believe I've lived a completely normal life thanks to this drug. F 54 36 years

 1  Gran Mals I had the side effect within 2 weeks of a rash all over my legs and arms. I was taken off it and given prednisone. That was awful. From what I remember about those 2 weeks, I was nervous, tired or just out of it. Was in a store calm and then had this overwhelming anxiety. I had to leave the store. Obviously not for me. The rash and borderline Psychotic behavior was enough to convince. I am on Depakote and although tired at some times, no seizures. M 27 2 weeks

 1  bullet in brain grand mal seziours sex drive whats that...is what i would say the first few years i was on it,memory loss,at times i cant sleep to save my life sometimes days at a time,for lack of a better way to put it my hands twitch out on me at random,i had all mt teeth pulled for two reasons 1 no more bloody toung and not eating for a week because of it and 2 pain, fall over for no reason people think im drunk at times, lets see i know theres more but the memory loss is kicking in dont have as many seziours but for all the down sids im gitting off thees pills i shouldnt have any i still from time to time wake up in the E.R idk there has to be something else i can be taking if any1 has any info i would love to hear it btw i also heard it can make it harder to have kids i hope this is not the case we are trying to start a family with no luck so far like i said any info will help M 28 10 years
 4  Oligodendroglioma Tumor I think it has caused me to have Erectile Dysfunction slowly over a period of 4 years System seams to be able to tolerate all other side effects M 63 5 years

 5  skull fracture at age 10 At age 66 I only have a very small amount of memory loss, names and this just may be old age. At age 10 the specialist put me on 400 mg/day dialntin & 60 mg/ day phenobarbatol, 1/2 morning and 1/2 at bed time. He also told me that I would have to avoid cafine, nicotine,alcohol, & later I found aspertaine to be included. Very important. M 66 55 years

 4  Motorcycle wreck Trouble focusing eyes, cloudy thoughts sometimes, serious loss of appetite, Hair growth on eyebrows and nose. I didnt have a seizure until over a year after the wreck which happened to be a grandmal. I havnt had any problems unable to be over looked other than trouble focusing my eyes. I have hazy thoughts. I have to force myself to eat more than a bowl of cereal some days. My eyebrows are thicker and my nose hairs have grown in length. I had to read on the internet about possible bone problems from this and the generic version so even if I havent had a noticable seizure since taking this medication I will be looking into finding an alternative drug. I took Dilantin and had to switch to the generic, Phenytoin, for the cost. M 31 2 years

 3  I have had brain surgery for an avm I experience many of the same things others have listed such as the tiredness, trouble expressing myself, vivid dreams etc. I am unsure if it really works as from time to time i have had seizures while on the Dilantin. Thankfully, though I think I have been seizure free for a while now, although i recently awoke with my mouth and tongue bitten. I m curious to see if any one has rapid arm movements during there sleep. At times I m good while other times one of my arms moves rapidly back and forth almost waking me. Sometimes I think it s a dream while other times Im sure it occured. M 42 3 years
 5  Epilepsy Memory loss,can't find the right word, tired in the afternoon, hair growth, Eye floaters. I am not sure but after 38 years of taking Dilantin I have progressively bad eye floaters, in the last 10 years I have develope atrial fibrillation an lately tremors. I wonder if these are connected with the extended use? In talking to my doctor he has told me that dilantin was used to deal with A Fib for many years. I wonder if there is any connection with onset from prolong use in people who never had it? I will add that Dilantin has kept me seizure free for 38 years though I still get aors from time to time. I am greatful for the drug despite the after affects. M 53 38 years
 4  Seizure Condition Fatigue or drowsiness (at times extreme) particularly in the early evening, increased difficulty finding the right words and/or remembering names, difficulty concentrating, irritability, sense of loss or feeling lost, lack of ambition, etc… I have listed my symptoms in order of prevalence and while I’m not certain all are side effects of Dilantin, they seem to be shared by many. The fact that I suffer from Sleep Apnea seems to amplify the drowsiness to the point that I often find it nearly impossible to watch a TV program or movie in the evening without falling asleep. Once I have passed out cold on the couch (around 8:00 p.m.), my wife finds it nearly impossible to wake me and I often feel that “coming out of sleep is very hard as if I’m drunk”, as one writer states below. Once I finally wake up (around 11:00 p.m.), I find myself wide awake soon afterwards and unable to sleep again until the wee hours of the morning. This frustrates my wife to no end I have read all of the comments on this page and I understand, to some degree, how difficult many of your experiences have been. I am grateful to have a fairly normal, seizure free life and realize that things could be much worse than having to deal with the side-effects of Dilantin. Nonetheless, I know that it can be challenging and I try to take comfort in the hope that someday soon progress will be made towards understanding, preventing and perhaps even curing seizure disorders currently regarded as “idiopathic”. In the meantime, I recommend that you send those near to you to this webpage so that they may read and gain a better understanding of what you’re experiencing. Good luck to all. M 45 7 years
 4  seizures Only been taking drug three weeks, some slowing of my thought process. 3 seizures in sleep. Crushed my L1 vertebrea during seizure. Anyone ever heard of that? Only seems to be slowing my thought process at this point. Does that get better with time? M 46 3 weeks
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