There are 116 ratings for the drug: DILANTIN in the Askapatient database.

Key to ratings for dilantin: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine.

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Rating	Reason	Side Effects	Comments	Sex	Age	Time Taken and Dosage		Date Added
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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		1/23/2010 Email
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		12/30/2009 Email
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		11/23/2009
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		11/10/2009 Email
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		10/9/2009 Email
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		8/31/2009 Email
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		8/29/2009 Email
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		8/20/2009
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		7/24/2009
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		5/30/2009 Email
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		4/14/2009 Email
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		2/21/2009
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		2/20/2009
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		2/16/2009 Email
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		2/12/2009 Email
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		1/30/2009
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		1/10/2009
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		12/20/2008 Email
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		12/17/2008
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		11/22/2008
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		11/11/2008
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		11/1/2008 Email
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		10/23/2008 Email
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		10/3/2008 Email
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		9/29/2008 Email
5	grand-mal seizure	Totally lost my sense of balance, slow growths in mouth may eventually take over where my tongue is supposed to be, bone density is "compromised."	Only had two break-through seizures -- once when I forgot medicine for three days (teenager!) and once during reduced dose after pregnancy. Yes, I went through two pregnancies and nursing for months afterward while on 2mg of dilantin. Hard to attribute some things to side-effect of medicine -- but very easy to note that seizures are gone!	F	60	43 years		9/14/2008
4	Temporal lobe epilepsy head injury	Fatigue in the afternoons and concentration loss. Twitchiness as I am about to fall asleep. Drink coffee to counteract this. I sleep like a baby at night. I have been taking 300mg every night for the last 15 years and have not had a single seizure during this time. I am competative skydiver and have done long distance swimming too. I battle with conversations at times and as I often forget what I wanted to say. I have very vivid dreams. I wondering if it is time reduce the dosage or experiment with other anti-epileptic drugs?	Been using dilantin for 15 years.	M	31			9/14/2008 Email
4	Complex partial seizures	Swelling of the gums, fatigue	While having video monitor EEG done prior to temporal lobectomy, it was cut back. Frequency/severity of seizures increased. After surgery, seizures were controlled. Pharmacist switched to generic and THE GENERIC VERSION FAILED. Went back on brand and it is working.	M	46	40 days		8/27/2008
3	Sleep Seizures	I have taken what seems like em all. Dilantin, Keppra, tegretol, trileptal, the list goes on on and on. Dilantin is the only one that seems to work. But only when its at a good level. For some reason my levels go way up and down we think it was because of a couple thing DO NOT DRINK DIET POP while taking this medicine. It will cause your levels to drop. Side effects definately get the memory loss and dizzyness. I also have very VIVID dreams anyone else get that? I got some nasty teeth too	Like I said the only one that works for me too bad the side effects suck	M	29	17 years		8/22/2008 Email
5	seizures	Only side effect seems to be growths on my skin especially on my face. I have been on Dilantin for 32 years! Tried others but others caused bad side effects.		F	50	32 years		8/16/2008 Email
4	Bad accident - seizure	I do get tired in the afternoons and usually take a nap. I have been that way ever since the accident. I was put on Dilantin about 2 months after the accident when I had a grand mal. I have been on it for about 3 years. The only other side effect is that my gums swell, which sucks lots because the accident bought me some braces and it looks funny. No big deal when I was originally a write off but things have gone amazingly well anyway.	I'm 27 and don't have any kids. I guess Dilantin is one of the best seizure medications to be on if you are pregnant, so I'll stay on it. Very few side effects on unborn babies. Side effects on me aren't too bad but my gums are quite swollen. I haven't had surgury to fix that yet.	F	27	3 years		8/10/2008 Email
4	Idiopathic Epilepsy	Years ago at age 39, I experienced 2 gran mal seizures while asleep - 30 days apart. I was diagnosed with idiopathic epilepsy and Dilantin was the best of the anti-convulsants I tried. I had petit mal seizures for a few years, but none after that. I've been taking 300 mg daily for 34 years. I had severe gum problems requiring sugery almost quarterly, which stopped completely after the first 10 years. I've had a slow developing neuropathy in my feet, and I know that Dilantin contributed to my osteoperosis (hip fracture 6 years ago). I was on Fosamax for 6 years with good results until recently. I was switched to Boniva with terrible side effecdts. My problem now is the possibility of coming off Dilantin to one of the newer drugs to better control the progress of the osteoperosis. Dilantin has been a great "work horse" drug for me despite the side effects. If changing causes me to lapse into a seizue, I may no longer be able to drive - or worse.	Younger women should clearly be aware of the need for conscientious dental health to control gum disease, as well as the risk for osteoperosis and drug-induced neuropathy with Dilantin. Otherwise, it's been a God-send for controlling seizures.	F	63	34 years		7/30/2008
1	Epilepsy	My IQ managed to drop ten points and I found problems with abstract thinking. My reading comprehension fell and my word usage became confused. My teeth hurt, and my eyes were twitching constantly.		M	20	2 years		6/28/2008
3	1 unexplained grand mal seizure	On 300 mg daily. Just was reduced from 400 (2) 100 mg twice daily. Trouble finding words, shaky hands, unable to focus, reading was a joke, dizzy, stumbled and lost balance, headache and not sure if this is from it but a lot more gas! Also my tongue and gums are itchy.	I don't like it at all, but it stopped the seizure in the hospital. I passed out while driving and was in and out of it in the ER when I had a grand mal seizure. Was given Dilantin in the IV and it stopped it. Have my first appt with a neurologist next week and would like to switch. Still waiting on first blood levels to come back.	F	33	2 weeks		5/23/2008 Email
4	gran tonic mal clonic epilepsy	chronic and often severe constipation, short term/ long term memory loss, reduced ability to concentrate, and tingling in the extremeties. no more writhing around on floors biting my tongue to a bloody pulp and waking up, injured, to voices of EMS people asking, "who is the president of the united states?" who take me to the hospital and charge me $2000 for the ride.	i forgot what i was going to say.	M	27	13 years		5/10/2008
1	epilepsy head injury from rta	poor memory, unsteady on feet, mood swings, low on patience, poor sleep patterns cant fall asleep. BAd gums, black and bleeding, poor concentration, skin rash, confusion at times, word finding difficulties, slow tired have to compensate with caffiene, constipated, reduced dexterity to fingers.	Dont take it!	M	49	14 years		4/24/2008
1	Epilepsy	It is a good medicine for seizure control. BUT, I have been taking it for 40 years and stopped it three years ago because I had heard of dilantin related problems especially after long-term use. I switched to LAMICTAL, which is a 3rd generation seizure medication and which is keeping me seizure free. About ten years ago, I began to have issues with balance and my gait. This worsened and a few times I fell while teaching a class. Sometimes carrying chemicals, I felt unsteady and was fortunate not to have an accident. My balance issue has worsened considerably, falls much more frequently and 'almost' falls (where I fell against a wall or counter, etc). By October of this year, I was falling one to three times a day. Some very seious -fell backwards down our stairs, another time fell into our fish pond and was lucky not to drown. I have broken furniture. Apparently, long term dilantin use can damage the cerebellum (Which controls balance and arm use) and also can cause ext	I think Dilantin is a good short term drug but should never, ever be used long term. There are new, anti-seizure medications with fewer side-effects.	M	60	40 years		4/21/2008 Email
5	seizure	Level went up to 22.8 I normally have a level of 14.5 to 15. Supplier said there is not difference in the new DIlANTIN. But as you can see something may be different.	Although my supplier said that there is no difference. How do you account for the raised level? I have been taking Dilantin for 8 years and as additional information I believe my seizure in 2000 was a direct result of having a flu shot. I had a flu shot at 10.00a.m and 12 hours later I was being taken to local hospital because of a seizure. Kind of makes you wonder about FLU shots!!!!	M	62	8 years		4/15/2008
4	at the age of 52 I had a grand mal.	I am glad this stops the seizures because during my grand mal I was in our cabin, fell off the the bed injured both shoulders, but cut off my air and came close to brain damage or death. My wife woke up and noticed something wrong and really saved me. but sometimes I have a very short (20-60 seconds) confusion, hot flash where my face gets red, and then I have a headache for a while. I have been taking this for about 18 months. my doctor is considering an additional med to help this. currently he doing more testing.	I read a lot about the drug and seizures to learn all I can. My doctor seems good but, like with most doc's is very busy. I want to go to Mayo for a complete physical.	M	53	18 months		4/15/2008 Email
4	unexplained Grand Mal seizure	"in a fog"; extreme short term memory loss very often; takes longer to recall long term memories; excess hair growth and darkening of body hair!!!; sleep up to 10 hours at night; coming out of sleep is very hard as if I am drunk; jitters; can't find the word; headaches if I take a few sips of alcohol	I take 100 mg 3 times a day. I have been on it for 4 1/2 months. No seizures although the one I had is still unexplained. My doc says it may have just been a "once in a lifetime event." I think it was caused by months of anxiety, stress, and insomnia before my seizure. By 3 months, I have gotten used to the side effects although if I am very tired or become upset, they intensify. I brought up switching meds to my doc to Trileptal but after reading the side effects for that drug I think I will stick with Dilantin.	F	23	4 months		4/13/2008 Email
3	Temporal Lobe Seizures	Memory Loss (both long-term and short-term), I don't remember entire events, if I do remember an event, I don't remember any details, it's like my past is 95% a mystery, I also have a hard time remembering conversations I just had, if I don't write it down...it's gone, I have a hard time thinking, sometimes my mind goes completely blank in the middle of a conversation, and I can't remember the next word I wanted to say, I'm having a hard time concentrating, I get anxious, I have no more patience, sometimes I sleep like a rock, and sometimes I wake up in the middle of the night and can't sleep anymore, and I toss and turn until morning	Dilantin has helped to control some of my seizure activity, however, it has robbed me of my mind and my memories. I'm even off work right now on disability, because the side effects won't let me function right.	F	43	14 years		4/13/2008
1	temporal lobe epilepsy	Very spongy, horribly swollen gums, in a matter of two months. Grew to cover half my teeth. Skin thickened and became pebbly and rough. Thick black hair grew on lip, chin, throat and limbs. Utterly terrifying and disgusting. Depression, suicidal thoughts, lack of dreams, edema. Massive weight gain, caused in part by the lethargy. Muscle weakness, often unable to bend over or stand up. Worse of all, became incapable of concentrating on reading, working math and physics problems and now forget from one second to the next what I am doing. Became the complete opposite of what I was physically and creatively before drug use.	This drug is a favorite of neurologists where I lived. Yes, it controlled my seizures for a while and I turned into a physical and emotional monster that I can't bear to look at. When I voiced my concerns of my appearance and physical deterioration, I was promptly told off and the drug increased. Bad drug, bad. Destroys the body and mind.	F	45	9 years		4/11/2008 Email
4	Removal of benign brain tumor.	Loss of short term memory. Loss of balance. Fatigue. Moody.	300mg/day for one year after the first post-operation seizure prevented reoccurrence of seizure during the one year span. Reduction of dosage to 250mg/day may have caused one additional seizure.	M	50	26 months		3/27/2008
4	cycle accident 1972 2 brain surger	at times comfused, short term memmory not so good. that is about it for side effects. If I drink a beer or two I get tired.	I have been taking dilantin for 37 years. 300 mil a day. The company should send them to me free by now.	M	53	37 years		3/26/2008 Email
4	Seizures, venous malformation	Very tired/drowsy, difficulty with word finding & loss of memory - though I thought these may be from my condition? Increased liver enzymes, but dr. doesn't want to take me off at this time due to my potentially having future medical procedures.	When I was in the hospital after my second seizure in four days, they started me on Dilantin and had a REALLY difficult time getting my levels "therapuetic." Dilantin IV was incredibly painful. I was originally placed on 400 mg/day, but level was still not therapuetic. Since bumping me to 500 mg a day, finally reached therapuetic. Have been on Dilantin now for 4 months and it has worked to control my seizure activity.	F	35	4 months		3/8/2008
5	epilesy from car accident	some motor skill loss(but that could be due to the brain injury and breakage of middle ear), memory loss - short term (or head injury related?), bleeding gums(just bad dental practices occasionally or bad diet?). Hard to tell which does what. But get anger spurts which are uncalled for and unexplainable.	Heard that dialantin would slow me down. Compensated by drinking coffee. Was more of a manic normal worker. Take 300mg/day Blood count as low as 40 and as high as 150. What is considered high for "toxic liver"?	M	52	34 years		12/27/2007 Email
4	epilepsy	reduced mental acuity, reduced memory, fatigue, hand tremors, reduced libido and eventually impotence, disturbing dreams, odd sleep patterns, lots of unwanted coarse hair growth on torso front and back and elsewhere, nerve damage to feet and hands, balance problems, sick feeling at times, fuzzier eye focus, constipation, reduced dexterity of fingers, swollen gums, bone density problems	IF you are sensitive to siezure control medications like I am, Dilantin is a bad drug to take over the long term. Unfortunately, it's the only one that works (I've tried them all). It is mentally and physically debilitating, to the point where I had to give up my law practice permanentaly. I am gradually suffering permanent numb feet and hands, and am told I will experience permanent balance problems and osteoperois. As noted in a Univ. of WA seminar, the drug does not work as well after you return to it after an unsuccessful attempt to switch, so be cautious when your neurologist casually suggests trying yet another drug. Dilantin is the oldest and probably least sophisticated of the siezure control medications, and is very toxic to those who are sensitive.	M	56	13 years		12/21/2007
1	seizures	mouth decay and seirus mouth pain can't eat regurly	we should be compasated for pain and suffering	M	22	1 days		8/18/2007
3	"Focus" for seizures in brain	After taking Dilantin now for my fourth week, I feel safe in regards to my seizure prevention, yet have many concerns towards my Dilantin medication. Since being on the medication - 400mg at bed time - I have experienced extreme mood swings including frustration, impatience and anti-social feelings towards my friends and family, even towards my girlfriend. I also find myself at times very dizzy for a minute or two at a time to the point where I feel I have to sit down in order to continue walking or even standing. I have also felt a major loss of appetite complete with almost daily headaches. My final symptom since beginning Dilantin is a very ugly rash beginning on my feet and hands and spreading upwards towards my legs and arms. The rash is similar to a Measles rash - and I have had my shots for that - with tiny red spots not very raised that itch on occasion, complete with shakiness and tingling of these extremities.	Has anyone else near my age with a seizure issue had the same sort of side effects to Dilantin or possibly have any advice? Is this something like an allergic reaction to the medication or the standard side effects for it? Are there any substitute prescriptions anyone knows of that I may be able to ask my Doctor about? Thank you for your time.	M	24	1 months		7/10/2007 Email
3	Brain Tumor	I have had a frontal lobe brain tumor that is basicaly inoperatable. Lack of concentration, dizziness, unable to spell words, loss of words, mood swings, swollen gums. I am in the process of taking Lamictal (300mgs a day) and Keppra (2000mg a day) with Dilantin (500mgs per day). With all this medication i still have a seizure every two weeks which are considered grand mal seizures.	Any suggestions of another medication that can help?	F	30	9 months		6/6/2007 Email
3	seizure	Moody, memory loss, bleed gums. dizzyness, felt lost, depressed, yawned all day nd slept more than was a wake.	I was cut down from 3 pills to 2 1/2 pills (half pill was chewable) The mix of pill and chewable made it worse symptoms.	M	21	2.5 months		5/16/2007 Email
3	Eclampsia	My gums are much worse, I have a lot of joint pain - especially feet, arms, hands, and pelvic. I don't have any long term memory loss, but definitely short term. I'm back to work and I have to ask to be retold things I was just told (I'm trying to be better at writing everything down). I also can't come up with the word I'm looking for many times or inadvertently call things by the wrong color, etc. I've had blurred vision and eye spasms. I get off balance walking or standing up. I'm drowsy all the time.	I am 31 years old and was pregnant at 32 weeks when I had a seizure, accompanied by a minor stroke, due to acute Eclampsia. I had a second seizure a few days later while still in the hospital. I was originally put on 800mg (400am. 400pm) and was decreased to 600mg (Which sounds like a lot according to everyone else? I've been on it for 4 months. I've been experiencing some issues and was curious to see if related to Dilantin. Many of my issues sound similar to yours. Thanks for sharing. My neurologist wants to a drug that is better tolerated, but can't right now due to a hemorrhage on the brain that has not dissolved.	F	31	4 months		5/10/2007 Email
3	temperal lobe epilepsy	sleepy all the time, memory loss, slurred speech	My mother is actually the one who has temperal lobe epilepsy. She has moved in with me because she wrecked her car while having a seizure. When she wrecked 2 months ago her dilantin level was 2.5. Now after still taking the same dosage it's 32. It's out of control. She's been taking dilantin for around 10 years or so but she's considering switching to something else. Any suggestions?	F	52	10 years		5/3/2007 Email
5	epilepsy	None	Has anyone else experienced breakthrough seizures while on Mylan's generic version? Have you contacted Mylan or FDA about this? Contacted an attorney?	F	28	10 years		3/21/2007 Email
5	epliepsy	some light headedness	Stay with the original brand. After being stabilized on Dilantin for 43 years, a change to the generic brand, Mylan, 2 years ago caused seizures to re-occur. There is a lot of information about Mylan not providing the same blood levels - mine were 1/2 what they should be. So be careful if your Dr. (or Insurance Co.) tries to change you to the generic form, Mylan.	M	57	43 years		3/11/2007
5	epilepsy	My side effects are very minimal - no changes in hair, no gum changes. Fatigue,depression - but I never related these to dilantin. Memory loss and eye-to-hand coordination problems in last five years - but i AM over 50, and these things happen with age!	I'm so glad its there. It contols my nigthtime grandmal seizures. I taken Lamictal for partial complex seizures (lapses of consciousness,inabilty focus/speak clearly)- that drug is a wonder also. Have had to increase doses over the years.	F	52	19 years		2/26/2007
4	Epilepsy	You get drowsy,uncordinated,dissoriented(sometimes). Also for me made it very hard to drive long distances, stay out late.	At first it worked with out a hitch but after 5 yrs of taking it I have developed worse and worse symptoms every year. Driving is becoming bothersome and drug seems to drop after 12hrs instead of the 24 its supposed to work.	M	21	5 years		2/5/2007
5	I had two seizures within 3 months	Occasional slight dizziness, but rare.	This drug has put my mind at ease about seizures. However, it has really rated high with my wife ! She observed both seizures I had while I was asleep. Scared her near to death, but had the presence of mind to call the EMT's. During the 2nd seizure I dislocated my left shoulder. Since taking 300 mg of Dilantin per day, I feel relaxed and at ease about not having to worry about future seizures. The V.A. has taken great care of me to insure no further seizures by continuing to prescribe Dilantin.	M	65	4 years		1/26/2007
5	I had two seizures within 3 months	Occasional slight dizziness, but rare.	This drug has put my mind at ease about seizures. However, it has really rated high with my wife ! She observed both seizures I had while I was asleep. Scared her near to death, but had the presence of mind to call the EMT's. During the 2nd seizure I dislocated my left shoulder. Since taking 300 mg of Dilantin per day, I feel relaxed and at ease about not having to worry about future seizures. The V.A. has taken great care of me to insure no further seizures by continuing to prescribe Dilantin.	M	65	3 days		1/26/2007
5	drug reaction siezures	I had a seizure 10 yrs ago and no cause was really confirmed; it was either lack of sleep or sulfur based drug. A few months ago I had a massive seizure, actually two, the second being caused when the doc took me off of oxygen for a c-scan. I found out that a few days earlier I'd been given a drug that I never should have been given. Ultram 50 is known to cause seizures and overdosing on it also increases it. The recommended dose for the 1st 3 days is only 25mg per day. Not really a memory loss, more of searching for the right name of something. I have tingling in my hands but I had some of that before drug due to pressure put on arm by leaning it on chair arm or desk top. I've noticed some problems with staying stable while walking. I found out buy taking does in smaller amount worked. I was given (by a licensed doc)100mg, every 4 hours. I trusted the doctor; I was just told it was a pain reliever like naprosin. When they did my EEG my whole head was full of seizure activity, not just	Not really a memory loss, more of searching for the right name of something. I have tingling in my hands but I had some of that before drug due to pressure put on arm by leaning it on chair arm or desk top. I've noticed some problems with staying stable while walking. I found out buy taking does in smaller amount worked. I normally take 300mg in the morning and 400 at night, when I had this problem I'd spread it out 200mg at a time to equal 700 a day. Now that part is fine.	F	52	4 months		12/12/2006 Email
3	Seizures from hemangioma in brain	After only one grand mal seizure caused from a small bleed in the brain this summer. My neurologist put me on generic dilantin 400 mg a day. Terrible eye problems. Could never seem to focus my eyes. Things seemed to be vibrating or moving when looking at them if the level got over 13. Also had joint pain.	Neurologist is now trying to wean me off. Still on 300 mg a day. She added to the dilantin, zonegran, 25 mg a week till I get to 200 mg. Not sure when she will bring the dilantin down. Now have the eye problem again, have terrible insomnia, feel awful! Any advice would be appreciated?	F	36	5 months		11/24/2006 Email
5	uncontrolled seizures	Wow- first drug I've had NONE. I'm pretty sure the teeth thing is coming as everybody gets it sooner or later and my dentist said "oh, you started dilantin- you're teeth are gonna be shot" but so far so good. =) I also take topamax and lamictal. My dose is 100mg in the morning and 200 mg in the evening. I weigh 103 lbs. My blood level sits at about 17 on average.	Topamax stopped my 'big' seizures. Lamictal slowed my partial complex seizures to 3-4 per month. VNS didn't do anything at all (getting it removed soon) Dilantin- is doing great! No real side effects so far, and I've only had 1 - 2 partial complex a month since starting it and every once and awhile had NONE! coooool =D	F	28	1 years		11/10/2006
3	epilepsy/seizure disorder	hypertrophy of gums, fatigue, mimimal hair loss, later tingling & numbness in toes	i did take this drug since 1979. i bore 3 children. my last seizure@ the time was 12-30-86. later i was tapered off due to current protocol @ the time----=i had been seizure free for 18 yrs. all children were healthy. i recently -since 2004 started having seizures again & the MD's wanted me on lamictal because of all the side effects of dilantin. Lamictal is very expensive, insurance or not. i am not so sure i am happy with it because i have had 3 breakthrough seizures on it and i am also taking xanax.	F	461	17 years		11/9/2006 Email
1	petit & gran mal seizures	Swollen gums(entire duration), mood changes from happy to irritated/angry to depressed with occasional pondering suicide(entire duration), sleepy throughout entire day with constant yawning(entire duration)	I have had 3 blood test results in past 3 years come back with the need for decreasing dose due to level being too high. First result with high level, the day of the bloodwork was spent sleeping practically all day except for to walk to hospital to get blood drawn. As soon as the results came back, I was called and informed my levels were dangerously high, I believe my dose at the time was 300mg in AM and 400mg PM. The second high result I was taking 300mg AM and 300mg PM along with 500mg Keppra AM and 1000mg Keppra PM so they reduced my dosage yet again to 200mg AM and 300mg PM with 500mg Keppra AM and 1000mg Keppra PM. Alas, my last test result in June of '06 was high dilantin level again. Now I am currently taking 200mg AM and 200mg PM with 500mg Keppra AM and 1000mg Keppra PM. Low and behold my listed side effects are still evident. In my opinion, which exceeds just the usage of Dilantin, I would much rather be flopping on a floor in private or public than have to deal with t	M	33	3 years		11/8/2006 Email
2	1 Seizure - Cavernous Malformation	I had a rash that started on my legs and eventually moved all of the way up to my face. It was all over my body. My doctor said the rash was not normal and switched me to Keppra.	I was very tired, had a terrible rash, terrible headaches. Very depressed - but that could also be because finding out about Cavernoma 2 weeks earlier.	F	29	6 days		10/20/2006 Email
5	4+ gran mal seizures	Trouble with concentration, memory, and depression (but may also have to do with the removal of brain tumor). Haven't had a seizure since the surgery 1.5 years ago. Still taking 600 mg. Has anyone experienced any problems with rashes with Dilantin?		M	29	3.5 years		10/15/2006 Email
4	seizures	I had a seizure in my sleep my husband saw it.There are events and places that i know longer remember.I am always tired,at a loss for words,very poor short memory,jointpain,muscle aches,excess hair growth where you dont want it to grow!I think the worst side affect is trying to hold a conversation with somone and your mind goes blank.Every time i try to come off the medicine i have very strong auras where i feel very scared nausea loss of memory.I take 200mg before bed time i must get at least 8 hours sleep or i get more auras.	Dilantin has kept me seizure free for 4 years.I would not want to be with out it!I try to remind myself that there are other people that have alot more disabilities than i.I would like to talk to someone who has been pregnant while on dilantin.	F	36	4 years		10/13/2006 Email
3	unexplained seizures	loss of memory, problem finding the right words, tired after taking medication, some tremors in hands, feeling dizzy and a little clumsy especially when eyes are closed.	Taking 800 mg of dilantin a day to control gran mal and smaller seizures. It works but feeling tired makes it hard on me and everyone in my family. Family thinks I can just stop being tired and that I should just "cowboy up" and not display any of my symptoms. They think I am just acting lazy I think instead of exhibiting side effects of dilantin. I am not so sure that they might not be right and I just need to change my attitude---just be grateful I am not having as many seizures on this dose.	F	43	2 years		9/18/2006 Email
5	Temporal Lobe Epilepsy	Vertigo, numbness in feet, memory loss, depression, bad gums,ticks, hands shake, lack of concentration.	Dilantin with phenobarbital has kept me virtually seizure free. I have been able to lead a completely normal life. The only time the medicine didn't work was while I was pregnant, so I had a tubal ligation to prevent harm to my son. In recent months the side effects started to show up and a blood level test showed that I had overdosed on Dilantin. Until now, I did not know of any side effects except for the gum problem.	F	57	43 years		8/30/2006 Email
4	GRAND MAL EPILEPSY	INSOMNIA(1-3 HRS ON GOOD NITE)SEVERE CONSTIPATION (GOT WORSE OVER YRS), DIZZINESS & FEELING OF PASSING OUT(DR'S SAY CAUSE LEVELS ARE LOW), SORES IN MOUTH & BLEEDING, NUMBNESS & TINGLING OF FEET, PAINS IN STOMACH-DRS JUST THROW HANDS IN AIR WHEN I COMPLAIN	BEEN TAKING DILANTIN FOR OVER 50 YRS, NEVER KNEW TIL RECENTLY ABOUT HAVING LEVELS CHECKED ATLEAST EVERY 6 MONTHS. HAVE HAD APPROX. 2-3 SEIZURES SINCE TAKING DILANTIN. AT MY AGE I WISH I COULD JUST KNOW WHAT HEALTHY FEELS LIKE AGAIN BEFORE I PASS!!	M	91	50 years		8/21/2006
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.	F	50	5 years		7/29/2006
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 Email
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 Email
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 Email
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 Email
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 Email
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 Email
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 Email
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 Email
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 Email
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
4	gran mal epilepsy	I have begun to experience peripheral neuropathy, and combined with menopause, memory problems. Lipitor use brought on a seizure and so did use of generic medication.	This medication has been good to me,controlling my seizures, but I wish the discussion of the side effects and what to watch for was done up front by the drs. The gp. does not know what to look for as a side effect and the neurologist sees me extremely infrequently.	F	56	40 years		7/30/2005 Email
3	due to having cerebral palsy.	i have been taking 500mg of dilantin every day for over ten years... experienced most side effects... so far the worst effect has been the extreme gum/teeth damage. i was warned about gum problems... but not at this extent... very painful mosta the time. i myself am researching different meds... does help w/seizures... not sure if the pain of effects r worth it though.		F	29	10 years		7/27/2005
2	Diabetes	Loss of Memory, Forgetfullness, Tired all the time, stomach pains,and pimples.	I had to start taking Dilantin because I would have seizure when my blood sugar would be too low. The doctor said the medicine might help with them. I guess as an extra precaution but I don't think its good and I don't like the medicine.	F	23	1 months		7/19/2005
1	epilepsy-grand-mal seizures	Tremors, slurring of speech, increased seizure activity	My son was on this after Depakote, and he had longer seizures, and ended up in the emergency room having a grand-mal seiure over 5 minutes long.	M	5	4 weeks		7/19/2005
4	seizure disorder	My hygentist noticed some affect to my gums from this med, I also believe it causes me to feel tired and some memory issues. My being tired is a contributing factor toward having mild anxiety attacks. I also notice darker hair growth incl onmy hands and under fore-arms around the wrist, and face. As of late I have also felt a skin crawling which I guess is a result of the hair growth. Otherwise this med controls my grandmal seizures	My Dr. plans to switch me from it in case I decide to get pregnant in the future. I carried one baby successfully to term with no ill-effects to the fetus. But they were esp watchful of heart and spine disorders to the fetus. She was delivered healthy and strong. We were happy to see she did not have any finger, toe or facial structure problems such as cleft lip or palate which has also been associated with babies born to mothers on Dilantin.	F	31	3 years		7/15/2005
4	Epilepsy	Decreased brain activity, tiredness/lethargy, lower levels of some vitamins(D and possibly B complex). Folic Acid supplement is a MUST for all users of Dilantin. Talk to your doctor for info.	It does keep me seizure free provided I have a normal sleep pattern of 8 hours a day. Without the sleep it is much less effective if not ineffective. I don't like what it did to me mentally. I have no choice. IMPORTANT TAKE SUPPLEMENTAL VITAMINS. Vitamin D is important in formation of bones and teeth. Dilantin lowers this vitamin level as a known side effect. Vitamin B-complex uptake I believe may also be affected. Vitamin B6 also helps in proper function of the neurons or nerves. B-12 loss affects short term memory. Vitamin B-12 deficiency symptoms include: loss of appetite, numbness and tingling of hands and feet, paleness, shortness of breath, fatigue, weakness, confusion or change in mental status in severe or advanced cases. These symptoms echo the side effects of Dilantin. Talk to your doctor or pharmacist first. The generic version of Dilantin did not work with me.	M	41	14 years		6/25/2005
3	seizures from mild tbi	The dilantin has the least side effects but I sleep at least 8 hours at night and then a 2-3 hour nap half way into the day. I am finding this drug sedative.	The dilantin only covers my partial and tonic-clonic seizures. This medication is not covering my absence, myoclonic and atonic seizures. Of all the seizure medications I have tried I do like dilantin the best for not haveing any effect on a personality change.	F	48	3 days		5/20/2005
4	Grand mal & petit mal seizures-	Immune system, memory, gums have receded from teeth. However Dilantin can control the seizure as long as my Dilantin level is at a proper level. I have tried several anti-convulsant medications. I have experienced fewer side effects with Dilantin.	Along with taking the daily dosages of Dilantin, I have done research and try to take responsibility for my daily activities. I know what triggers my seizures and attempt to avoid them. I experienced a grand mal four weeks ago, just days after back surgery. It turns out that my Dilantin level was a four. It is a shame that I can not keep track of my levels other than going to a lab to have blood drawn. As with people with diabetes checking their surgar levels it would be great if people plagued with seizures had a method of making sure that their anti-convulsant medication was at a safe level.	F	53	30 years		4/15/2005 Email
3	Cavernous Angioma-Brain Sugery	I have a terrible memory to small details, have a very short attenion span during school, mental confusion, sometimes spaz attacks, unsteady gate when driving, some not so noticable twitches	It helps for siezures but its hard to say i would have more because I have only had 2 (that i know of) before sugery, and i was up too 10 give or take petite siezures daily. School is rough! My teachers do nothing.	M	17	8 months		3/31/2005 Email

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Key to ratings: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine.

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