There are 48 ratings for the drug: DILANTIN-125 in the Askapatient database.

Key to ratings for dilantin-125: 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		Date Added
				F  M
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1	grand &petit mal siezure onset 2/06	extreme dizziness, fatigue, loss of concentration and memory loss, depression, no matter how high the Dr raises my dose (currently 200mg 3 times daily) my blood levels do not show the dilantin, and have even been accused of NOT TAKING the dilantin. swollen gums, itchy face, mild body rash, nausia, constipation, water weight retention	i am unsure why my blood levels will not show the dilantin level i need, no matter how high the dose is.	F	36	3 years		5/5/2009 Email
4	Seizure	Had a car accident and was knocked out. 10 days later had a bad seizure. Was given 1000mg of Dilntin and observed for 3 days in the hospital. Have been on 200mg once a day for about a month. Dont feel sleepy through out the day, have trouble falling asleep, and feel like im just in a zone alot. I do have the shakes at times. So far just feeling minor symtoms. I rather be feeling these, then having another seizure.		F	28	28 days		2/3/2009
1	Temporal Lobe Epilepsy	EXTREME fatigue, shaking, memory loss, just not myself	I can't even stay awake for a movie, play with my children, or eat out at a restaurant. Whether it be in the morning, day or night. If I sit down for fifteen minutes or more, I'm exhausted and dozing off. First thing in the morning, I get ready for my hour long drive to work, and half way , I'm fighting to stay awake. Same for the trip home. At my hour lunch, I sit in the car and take a nap. The shaking is progressing, but slowly, sometimes it's noticable to other people. I cannot concentrate at work or at home whatsoever. It is affecting my job, but I'm afraid to tell anyone (don't want to lose my job). I try hard to get my job done correctly, but my job performance isn't at all what it used to be. I have to make notes for everything, simple little things, like writing down my telephone extention on a post it, and putting it on the phone that I use 20+ times a day. I am almost unable to read and comprehend anything. (I used to be able to read an 800 page book within days). I have diff	F	32	7 months		7/16/2008 Email
4	Brain Tumor - removed 1.5 yrs ago	Very few side effects initially. Now 1.5 years later, I am shakey, trouble with speach (forced me to slow down), trouble typing, difficulty sleeping - even though I'm exhausted, the memory issue is causing problems. I've developed some strategies to manage the short term issues (it's affected my work) I'm hungry alot and am having difficulty trying to lose weight. The shakiness just started and I have no idea how to control this or whether I need to see the doctor AGAIN. I had what I would call a mini seisure as a result of drinking an excessive amount of expresso (6 cups - no one ever mentioned this before- da)I'm drinking one small to medium coffee a day now, but may need to eliminate this altogether do to the shakey issues. I just got my license back and don't want to jeopardize losing it.	I am on 500 ml a day - 200 in the morning and 300 at night. I was feeling so well after my surgery that I cut back to 400 ml. For 4 weeks I felt great - then had a gandmal seizure. If you can switch from one med to another - please post the info.	F	57	1.5 years		4/21/2008
3	3 unknown seizures	tired all the time, hands shaking, loss of appetite, a lot of mood swings, slurred speech	I'm not sure why I had these seizures but I think its stress and anxiety they only happen while I am sleep. I'm not sure if the meds are working or not but I do know that I don't like feeling like a drug addict. I have to stop typing because my hands are shaking as I type.	F	30	2 weeks		4/4/2008
5								2/17/2008
4	after a brain tumor at age 40	Take 300mg morning and 200 mg at night..Dental problems-receding gums but this medicine is my life saver. Any time my blood level gets low(i.e.forget to take it) I have seizures		F	49	9 days		2/4/2008
1	Grand mal seizures	Hodgkin's lymphoma	Would not recommend for extended use. There are safer seizure drugs. I took for 5 years and developed hodgkin's lymphoma. 6 months of chemotherapy and radiation. Now taking lamictal and it's great. Email us if you have any questions - please let us know if you have or have had lymphoma due to dilantin.	M		6 years		12/10/2007 Email
5								11/24/2007
5	To control seizures	Gum recession; some reduction in energy	Have been on this for 16 years at 400 mg. daily. Wonder what it would be like to not be on it.	M	60	16 years		11/2/2007
5	Epilepsy	Speech problems, Insomnia yet when i did go to sleep didnt wake up in the night, turning a bit yellow (not that bad though), always tired	I LOVE Dilantin! Although i am not yet completely seizure free, i have had 100% improvement. went 20 days until my med. level dropped and had to raise the dose. I went from having 6-7 extreme seizures a day to having maybe one or two staring spells or simple partial seizures a day. On 600mg a day.	F	16	6 weeks		4/30/2007 Email
4	Grand Mal Seizures	This drug has been a life-saver for me. 34 years ago I was in an accident that caused seizures to begin. The only time I have seizures is if I go off Dilantin. I take 100 mg in the am and 200 mg in the PM. Until recently, I have always been able to maintain strong focus and memory. I have been noticing some short term memory problems lately-(may be related to perimenopause) and some problems maintaining focus. Again, not sure totally of the cause. I DEFINITELY advise ALL of you to have your Vitamin D levels checked as well as regular Bone Mass Density testing. Dilantin interferes with Vitamin D absorption and unless you are outside a tremendous amount, you may need a supplement in addition to your calcium supplements. Please consult your doctor before you start any supplements. Also, it is important to NOT take your mineral supplements at the same time you take your dilantin. Separate them by at least a couple of hours. My Vitamin D level was 12-- normal is 35-100? Do some		F	47	34 years		4/9/2007
4	3 Grand Mall Seizures	Fatigue / loss of energy, blurred vision, memory concentration	I was taking 5-100mg pills a night (made me too tired to take during the day). I am now trying to wean myself off of the medication---be seizure free for over 2yrs. Please let me know if you have also attempted this and what side effects you have had.	F	39	3 years		2/21/2007 Email
5	seizure disorder	acne, low sex drive, short term memory loss,	I am very satisfied with dilantin because it had cured me. HAven't had a seizure in 8 years, only have them when I am off dilantin. Have had twins and nursed both and they are fine. No problems, they are 3.5 yrs old. Been taking Dilantin for 8 years last 4 years have had mild acne, poor memory and non-existent sex dirve. Considering changing meds, don't know to what but the memory loss, acne and low sex drive is not good. Didn't know these were possible side-effects of dilantin until I went on site for acne treatment and they mentioned dilantin may cause acne. Started investigating more and asking more questions. No dr. I have had has mentioned these side-effects which is really annoying because I thought I have been losing my mind. I can't remember things quickly. It is like my brain is in slow motion. If I am reminded of things I can usually remember some details. Very frustrating!	F	34	8 years		10/20/2006
1	grand-mal seizures	lymph nodes were very swollen and sore, sweats, shakes, mental confusion, stuttering, rapid eye twitching, muscle spasms in hands, diminished sex drive, swollen gums, vertigo, paranoia, depression, fever, and massive headaches.	i was taking the basic 100mg-3x daily, after having 2 seizures in a 5 hour period. by the end of the second week i was so confused that i didn't even know who i was, so the doc asked me to stop taking it after they tested my blood levels: they were 33mcg/mL and then 3 days later they were 21mcg/mL. i would never take this medication again, even if it was the only thing i could take for seizures.	F	28	2 weeks		8/3/2006 Email
2	seizure disorder?	confusion, tired and a horrible stutter. The more excited I get the more I stutter. It seems my mind sticks and I can't finish a thought. I think I would rather deal with the little seizure I had than deal with the side effects.	Anyone with suggestions on how to get rid of the stutter. I think I am about to lose my job because of it. I am in Marketing and sometimes I can't get my thought out.	F	37	24 days		6/30/2006 Email
1		Dilantin Linked to Stevens Johnson Syndrome						6/30/2006
4	Grand Mall	Sort of a dumbing down effect. More sleep required. Sexual arousal when sleeping on my back? Depression and lack of drive without adequate sleep. Initally on 300 ml then 400 now 350 taking medication for 6 months Don't anticipate change in meds	First grand mall July 0'03 second Jan '06. Unprovoked 3 months driving suspension then 6 months. Started dilantin after second seizure. Would appreciate comments.	M	59	6 months		6/15/2006 Email
4	unprovoked siezures	dental, stopped menstruation, shakey	I will keep taking it....otherwise can not drive.	F	43	2 years		4/4/2006
1	grand maul seizures	dizziness,drowsiness,along with insomnia,mental confusion,get lost in my apt,unable to concentrate,depression,acts of violence towards my husband,suicidal thoughts	I have not had a grand maul seizure since starting the med but have had several petit mauls chaing med this fri.I would not take this medication ever again would rather have seizures	F	27	12 months		1/24/2006 Email
1	Epilepsy	Memory & balance problems. Neuropathy causing loss of feeling that started in bottom of feet, now up past my waist. Severely impaired genital feelings/sensations. Slurred speech, fatigue Swollen and receded gums, loss of memory. shaky. Muscle aches & pains. trouble concentrating. Always tired and fatigued.	It can be an effective drug but a heavy price in side effect is paid for that effectivness.	M	52	37 years		8/6/2005
2	Seizure	Red rash all over my body, switched to Depakote	Was 12 when this happened	M	12	4 days		7/25/2005
1	seizures and brain hemorrage	Horrible nausea for hours after each pill. I can't eat and I am irritable. Sore and swollen joints.	I have had no other seizures but they were directly related to the hemmorage	F	46	45 days		6/15/2005
4		Drowsiness, lethargy, somewhat depressed, somewhat reduced sex drive, overgrowth of gums. Not sure if my headaches are related to this medication or my epilepsy in general. Also, the dosage changed greatly during my use from 300mg to 700mg within several years. Thus, at times I thought I had a large enough dose but had seizures I suggest you make sure you get regular blood levels because the dose you require can change because your body learns to filter it out. Also, I've noticed that when my blood levels were high, the drowsiness and lethargy were pretty immense.		M	27	9 years		6/2/2005
3	EPILEPSY	DIZZY,BLURED VISION,SHAKES,FATGUE,HEADACHE,LOSS OF BALANCE AND LOW SEX DRVE	IT SUCKS BUT I NEED IT	M	31	12 years		3/10/2005
3	Epilepsy (from brain tumour)	Initially worked well, no grand-mals but I quickly started tolerating it & focal seizures returned. Increased doses led to memory loss, speech difficulties, and hallucinations. Physical exertion exacerbated these effects, plus giving a cannibis-like lethargic euphoria (less fun than it sounds). Eventually increased doses led to collapse & change of medication.	After change to Clobazam & Tegretol, the side-effects stopped. The initial use of Dilantin literally saved my life, but the side effects of the high doses I personally needed were too severe long-term.	M	29	7 months		2/25/2005
3	Siezure - Scar tissue brain injury	Slurred speech, dizziness, blurred vision, balance problems, tired, weak, muscle atrophy, sexual side effects (drive lowered, delayed orgasm), weight gain, swollen gums...severe teeth problems - dental.	I have taken Dilantin 23 + years, and was shot in the head, which caused the seizures. They are grand mal seizures. Dilantin stops them completely, except every other week I have one. I am also on Tegretol 1000mg and the dilantin I take 3 a day. I still get the jerks in the morning. I am tired and sleep all day long still, I just fall over and sleep in the middle of stuff. The doctor just put me on Keppra. I am beginning it tomorrow. He is from UC Davis. I am considering the possibility of scar tissue removal. Any suggestions regarding Keppra and Tegretol together and about scar tissue removal?	M	43	23 years		2/15/2005 Email
5	Brain Injury	Early on some dizziness and confusion. Transient nervousness early on also. Side effects subsided after a few weeks.	Only mood stabilizer that gives me some energy while helping me function. So far, so good....	M	29	11 months		12/23/2004
2	eplipsy	frequent headache, major dental problems- genguvits. sezure free for the most part though		M	41	20 years		12/23/2004
5	Mood Disorder	Minimal. A vitamin D supplement eliminates possible bone loss problems. Flossing and brushing at least twice a day eliminates gum problems. Exceptional focus and energy. 100mg twice daily.	This is the most effective mood stabilizer I have tried. Better than Depakote, Tegretol, Gabitril, Topomax, Lamictal, Neurontin etc.. Unique properties are present in this drug. I am much more clear minded. My skin and overall appearance are better along with lowered blood pressure and lowered cholesterol.	M	32	5 years		12/21/2004
4	Seizure Disorder	Swollen and receded gums, loss of memory, trembling hands.	Don't go off it abrubtly. Do not change the dosage without checking with a physician who knows your history. Be sure to tell any physician or medical personal that you are taking dilantin, the dosage and the reason for taking it, this could save your life or cause you to have another seizure. I decreased my dilantin,added trileptal as well as abilify, abilify and dilantin are a poor combination which can cause seizures. Always go with your gutt and ask, ask, ask it;s your life.	F	43	5 years		12/19/2004 Email
3	partial seizure disorder	drowsiness (more at first), muscle pain, bruises heal slower	Doctor is still raising level to get into therapeutic range. Now at 600 ml I hope it starts to get there. Haven't had a siezure since I started taking it, but pre siezure symptoms still come and go. Hope to be able to go running again soon.	M	40	30 days		11/19/2004 Email
3	seizures for unknown reasons	extremely tired and fatigued...problems with short-term memory...stutter like talking		F	38	4 weeks		10/4/2004 Email
4	Partials& 3 granmals while sleeping	Very Tired. Some nights I would fall asleep at 6. Waking up was never a prob though, felt energized after few hours sleep.	Only reason I got off was that I had swollen lymph nodes and was scared of lymphoma. Not sure whether the 2 were related	M	27	2 years		6/28/2004 Email
4								6/2/2004
4	Developed seizure disorder	I have dizzie spells, trouble concentrating, tiredness, lazzieness. However, as you all well know, this beats having a seizure. I have been taking Dilantin for 12 years. I've been seizure free for 10+ years. My most recent seizure was last night (5/14/04). Hope to go another 10 years seizure free!		M	34	12 years		5/14/2004 Email
4	Developed seizure disorder	I have dizzie spells, trouble concentrating, tiredness, lazzieness.	However, as you all well know, this beats having a seizure. I have been taking Dilantin for 12 years. I've been seizure free for 10+ years. My most recent seizure was last night (5/14/04). Hope to go another 10 years seizure free!	M	34	12 years		5/14/2004 Email
2	epilepsy	nausea, weight loss, tired all the time, hallucinations, swollen lymph nodes, menstrual irregularities (i.e. bled for two months straight)	i haven't had any grand mals or black-outs but i can't eat and feel like i'm on acid much of the time. i haven't had any of the long-term side effects yet but i'm not sticking around to check them out, i'm probably switching meds next week.	F	24	5 months		1/26/2004
5	brain surgery and shunt system in	Felt weak, dizziness for couple of seconds, but it all passed now when i'm taking it regularly 3 times a day	Because you are not allowed to drink much , i had five seizures since they damaged my brain tissue by putting the shunt system in five years ago. I try to eat good, sleep more than 8 hours and exersize along with taking dilantin 3 times a day to live normal life. Try to listen to your body and whenever you feel not ordinary, take a pill.	M	20	3 years		12/21/2003
3	sizures ( scar on BRAIN)	tired, teeth, loss of weight, headaches	Im on alot of medication still having problems and i have been given the option of having surgery where they remove this scar and possibley become seizure free i would appreciate any advice or comments from anyone who knows about this or has been through it !!	M	27	3 years		10/20/2003 Email
5				M	74	33 years		9/4/2003
2	Grand-Mal seizures	Headaches,shakes,muscle pain,muscle twitches,insomnia,dilated pupils	Not working well for me at all--still had 2 seizures while taking this--feel like a truck ran over me all day long--Dr. is changing medicine tomorrow.	F	34	1.5 months		6/18/2003
5	seizure disorder	Slurred speech, fatigue, and bruise easily.	Dilantin has made it possible for me to lead a normal life free from concern about seizires.I monitor the level frequently and avoid any over the counter medications which indicate they may cause problems.	M	69	39 days		6/8/2003
5	seizure disorder	Slurred speech, fatigue, and bruise easily.	Dilantin has made it possible for me to lead a normal life free from concern about seizires.I monitor the level frequently and avoid any over the counter medications which indicate they may cause problems.	M	69	39 years		6/8/2003
2	stroke	speech problems after I have taken this 18 months. I feel depressed, too tired to work well I still had 2 other strokes when taking dilantin.		F	56	18 months		5/24/2003 Email
4	seizures	loss of balance, short term memory affected;words backwards, combined;typing letters flipflopped with right and left hands;tongue thickened feeling tired fatigued, sleep alot.	it keeps the aura from proceeding to a fullblown seizure	F	46	30 days		3/10/2003
5	Seizure, Brain Surgery	Extreme drowsiness and lack of energy for first few weeks.	Dilantin works well, especially once I got past the first few weeks of taking it. Getting blood work regularly helps to make sure it's working.	F	21	3 years		2/10/2003
3	garan mal seizures	dizziness, equilibrim, droziness, somewhat depressed		F	56	7 months		12/16/2002

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Average rating for drug: 3.3. This page is printer-friendly; use landscape print with background color turned on.

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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