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Posted 1/11/2005 9:35 PM (GMT 0)
Hi everyone,

Just out of curiosity, has anyone out there been experiencing obvious side effects from the use of dilantin?

It is documented that it is hard on the liver, causes abnormal hair growth (where you don't want it), and/or overgrowth or softening of the gums.

I also want to say that I've been on this drug for 25 yrs and I have my blood monitored weekly and my liver is in good shape.

I see the dentist every 3 months(because of the dilantin he wants to see me every 3 mos.) and my gums show no sign of dilantin use.

I do however have unwanted hair growth (legs, arms, chest, back,)  but bald on the head. (I don't know if thats hereditary or from the drug)My arms and legs are like Robin Williams.

I've noticed other side effects such as stigma (sp) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile disfunction, to name a few.

I also take pheonobarb and the only effect I get from that is drowsieness and getting tired. 

Randy (Ontario)

 

Posted 1/12/2005 3:20 AM (GMT 0)
Randy those are the two oldest antiseisure drugs on the market. I have been on Dilantin since 1997. The only sie effects that I really feel is when it becomes to toxic in me. I was having my blood checked every week and sometimes twice a week. The Phenababatal they took me off of when I went to the Epileptic Clinic. The Neuro.I first saw said my Dilantin Level only needed to be cheched every month. Lucky for me I know how it feels when it is toxic and wont hesatate to go to the E.R. The Phenobarbartal made me talk like I was drunk and looked like I was very sedated. What I an't understand is that they are only checking my Dilantin Level once a month. I am just so very uncomfortable making a change in Doctors and not really seeing who I will be seeing yet. The Neuroligist i did see made some changes and started me on Zonegran. The third week of being on that I went one whole week with no seizure so I assume they know what they are doing. I just want to be more established and have test results back and know their game plan like yesterday. AS for hair growth I never thought about it but I have the thichkest head of hair. It was not always like that. I keep it short now but have it thinned out once a month it just drives me crazy when it is to thick. I never connected it to the Dilantin but I would say it started happening about a year after I was put on Dilantin. Oh yah my legs to. Mary
Posted 1/12/2005 6:57 PM (GMT 0)
Sam was on it for 1.5 years and did start to have some gum overgrowth. He was always much colder than normal while he took that one, too. He had terrible mood swings and learning issues and that is what made us switch....


Sorry Randy, that hair overgrowth and undergrowth is never where you want it!!
Posted 1/13/2005 12:36 AM (GMT 0)
Mary,

I realize that dilantin is/was one of the oldest anti-seizure meds on the market but when I went on in 1979 it was one of just a few available. The pheonobarb makes me feel drunk/stoned too like you get. It causes mood swings for me too. I didn't want to take the chance of changing meds and risking other side effect because I also have colitis and this is the right coctail of meds.

Other meds may interact differantly.

 

Jen, My liver enzyme count was good and I was at the dentist today and there is no problem with my gums.

 

kayakmom,

I always tend to run hot, my wife tells me that I generate heat.

 

Randy

Posted 1/13/2005 4:18 PM (GMT 0)
Randy, I am very gald the two work for you. That Penobaebatal I could hadly function. I went to see my PCP and acd\ked hime if he thought I might need hormones. He adviced against it. I talked to the nurse at this new Epi Clinic I'm going to she said that it take about six weeks for the Zonegran to really start working and one big side effecte is crying boy do I cry. I am also calling the Neuro. I seen in the past because she made it sound like I should still be seeing him also. They all have me so confused that I just have to call and find out. with no health insurance he had no problem seeing me. Get on the goverment insurance and eveything changes. I guess time will tell. I hope you do good Mary
Posted 1/17/2005 12:38 PM (GMT 0)

Hi!

I have been on dilantin since 1992. I have never heard of it being toxic. Can someone please explain that to me? I am always cranky and have terrible mood swings. This is difficult on my husband. We also have three children and I am constantly trying to not let that affect them.

Thanks,

Nikki

Posted 1/17/2005 3:21 PM (GMT 0)
Nikki, some of these meds do sure affect moods! Has your neuro been made aware of how it is affecting you? I find that I am now way over emotional, but for me it is stress induced, I believe. (I am not on AEDs, my kids have epilepsy not me)


Talk to the doctor. Yes, it is possible to be toxic, blood work every so often checks that....Hang in there
Posted 1/17/2005 4:01 PM (GMT 0)
Nikki,
I have been on dilantin since 1997. When it is toxic in me I walk very bad bump into things can hardly talk can't pick things up like a pen or pencil. My problem was that I would get diarreha and my level would go down then the NEURO. would increase my dilantin. I would not decrese it after my intestetines were better. Well one day when I was still able to work I was off A co-worker called me. I told him I felt something was wrong. He left work and took me to the ER. My dilantin level was way to high. That is when I went on the liquid dilantin when my intestines were not doing good and would go back on the capsules when they were ok. I still would get my levels checked every week after that . Dilantin can make you a bit moody but that is better then having seizures. Mary
Posted 1/23/2005 4:07 AM (GMT 0)
Nikki, Your dilantin level is suppose to be betwene 15 and 18 I think. It can be very toxic, the real problem I was told about that is that if you take too much it will actually cause seizures and stop working after a while. I had a neurologist that put me on 400mg and I only weigh 140 lbs. My level was at 25. My eyes would cross during the day and I was so tired I couldn't do anything. At that time I was on dilantin and tegretol xr. Now I'm taking dilantin, lamictal and zonegran, thank God for dilantin. I still get tired but I can see strait and stay awake during the day. I've been taking dilantin since about 1985. Good luck with all the problems and you will be in my prayers. Jeff
Posted 4/20/2006 2:26 PM (GMT 0)
I'm so glad to have found this website. My husband has been on 600mg dilantin for 3 yrs. I've noticed a big difference in him. He says he feels like his "brain freezes", he's depressed, and looks at me with these blank looks when I ask simple questions. His doc told him he didn't need level checked. Truthfully, I thought the brain freeze thing was an excuse but I see now he needs to find another doctor. thanks
Posted 4/20/2006 2:37 PM (GMT 0)

Hi RanMan, I have been on Dilantin for about four years. I have noticed slight abnormal hair growth and swelling of the gums (only if I don't brush at least 2X a day).

As far as what you wrote below I definatly have major effects on the eyes, always paranoia, poor coordination. It comes and goes. Sometimes I am ok and other times not. When I am around a lot of people is when I notice it the most....

"I've noticed other side effects such as stigma (sp) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile disfunction, to name a few.

I also take pheonobarb and the only effect I get from that is drowsieness and getting tired" 

Candace

Posted 4/24/2006 4:16 AM (GMT 0)
Hi RanMan!

I've been on dilantin for about 10 years or more.
Did have some slight swelling of gums - but not bad or noticeable,
in fact, always had to remind dentist of it when i went in. and he always mentioned that most people on dilantin had noticeable swelling.
so i guess it affects some people differently

i never took as much as my blood levels said i was suppose to. was suppose to be on 400 mg a day - but felt so out of it - i'd wander around in a daze - couldn't function -
that i begged dr. to lower dose and he did - i went to 300 mg - it still controlled my seizures, but i could function and wasn't so clumsy either

i never had lots of unwanted hair - but maybe that's cause i'm a woman?
once in a while i'd get a stray black hair - but being a woman - i'd immediately pluck the bugger out!!!!!

recently my dr. changed me from dilantin to lypr____ something. it took 5 wks to change - but it's kinda weird feeling - still not sure if it's being off the dilantin or the new meds - lots more energy - and have lost weight. husband is not very happy with that! but i see doc next month so i'll check on it then.

honestly, the dilantin controlled my seizures so well i probably wouldn't have changed except for my doctors push about it!
Posted 5/13/2006 7:30 AM (GMT 0)
My name is cindy and my dr just told me i have eplipsey.He said i have cysts on my temporal lobe and that it was there from birth and just now causing problems. I stay tired all the time,donät sleep very well.canät rember stuff,numbness in different partäs of my body also feels like sharp pains go through my body. This site has helped me understand alot about eplipsey.I was takeing phenytex but my blood level was only at 3 and my dr changed me to dilantin some of the side affects i have like blured vision and most of the time i lean to the right when i walk.I catch myself stareing off can anyone tell me if this is a seizure.When my seizures started i felt extremley light headed and confused.I take 500 mg of dilantin eachday.
cindy
my e mail address is simplycindyatyahoo.com
sorry about my spelling and the computer key for at is stuck
Posted 5/13/2006 7:36 AM (GMT 0)
Sorry this is cindy again my e mail is simplycindy05atyahoo.com.I see my spelling is pretty bad you would never belive i went to college.
cindy
Posted 5/17/2006 4:24 AM (GMT 0)
I was taking Dilanton for over 15 years. I moved to a new city and my new doctor found that I had been every so slightly losing feeling in my feet due to the Dilanton, which she could tell from balance and sensation testing. I did not notice it, but she said it would get worse. I am now taking Zonegram. When I was on Dilanton I was having a seizure about once per year. On the Zonegram, I had a seizure when I first started, and I have been seizure-free for over two years.
Posted 5/17/2006 4:54 AM (GMT 0)

Yuki,

I have been on dilantin for over 26 yrs and as per my own experiences, you do start to lose some feeeling in your limbs and gradual irrepairable nerve damage due to long term use.

In my case, since I also have Ulcerative Colitis controlled with meds, Dilantin is the only proven drug that will work for me without clashing with my other meds for my UC. So as you can see, I'm stuck between a rock and hard place.

My neurologist said that if I were to  attempt to change meds I would run the risk of lower brain stem damage, not to mention other problems (like driving (other story))

Sounds like you're doing great on the Zonegram. What works for some may not work for others.

Good Luck with the Zonegram.

Randy

Posted 5/21/2006 12:11 AM (GMT 0)
i was frist perscribed dilantin at frist ofmy seziure experincesomy gosh i hafd a high fever and then the other part was i got a bad rash looked similar to chicken pox
Posted 5/22/2006 12:16 AM (GMT 0)
hi

I've been on dilantin for 28 yrs. I took care of my teeth with regular dental visit. I only had problems with my gums receding, which is not posing a big problem. My liver has had elevations of protein, but it was constantly checked. My liver is functioning perfect after 28 yrs. I get my blood check for toxicity every 6 month. I did notice an increase of heavier hair growth on my arms, but nair works wonders. When taking seizure medication be educated know the side effects yourself. Being a epileptic makes you responsible for your own well being. Just because a doctor prescribes a new med doesnt mean you have to take it. Talk it over with him, first. Always consider side effects. Educate yourself. I have grand mal seizures, I had them under control now for 10 yrs now.

Good luck....remember if its not broke dont fix it, if your meds are working....dont let them change it because something new has come out.
Posted 5/23/2006 11:44 AM (GMT 0)
Hi Simply Cindy!

when i first went on dilantin i was really "spaced out" also.

i asked my dr. to bring my dosage down a bit so i could function. with some arguement he did - which helped a lot!

and i also wanted to ask Yuki

if your zonegram is very expensive

recently my dr. changed me to lamictal

and even with my good insurance it's $50 a month

so i changed over to keppra - but i've heard i can have

"break thru" seizures on that - so i'd really like to get on something else that's more reliable.

thanks, Darla

Posted 5/31/2006 7:36 PM (GMT 0)
 I have been taking dilantin for 24 years and I have no side effects from the drug. cool
Posted 6/11/2006 2:31 AM (GMT 0)

Hi Everyone

Thank's for all the response it sure is nice to talk to people who can understand how you fell.I stay extreamley tired all the time and a bad memmory but as far as i can tell no side effeccts yet.Dose anyone have ringing in their ears stare off into space or their bones hurt oh and sharp like pains in you'r body at any time day or night.What has you'r dr said about driveing?I wish you well and would like to thank each and everyone of you for the rasponse.

cindy

Posted 6/14/2006 11:18 AM (GMT 0)

Hi Cindy,

I have been taking Dilantin for the last 37 years.  I am and have been suffering many side-effects for some time now.  I have numbness in my feet and legs and have recently been diagnosed with DVT.  My memory in general is not good but my short-term memory is pretty much  non-existent.  I am tired all the time and have problems sleeping more than 4 hours at a time.  I am older now and have bone breaks as a result of my seizures.  I have constant problems with my neck and back and have fractured a vertebrae in my lower back.  I also have liver damage from having to be maintained at toxic levels for the Dilantin to work after all these years and all my friends have known for years that I cannot walk straight.

My problem is that I am an intractable epileptic and Dilantin is the only medication that has given me any control over my seizures.  I have been on eight other medications in the last 10-15 years with little if any help for my seizures.  I would probably take the Dilantin for another 37 years to get some relief from the seizures.  I still get up every day hopeful that today the scientists will discover something new to help me.  Never give up hope.  Patti_S

Posted 6/20/2006 12:31 AM (GMT 0)
Hi Patti

You seem to have some of my problems.Do you ever have needle like feelings all over you'r body? it feel's like a bee sting everywhere as far as i know no side effect's yet but i still have seizure's from time to time most of the time the medicine controls the seizure i feel it starting and then it stops.If i am tired i have seizures like the other night i had to spend 14 hours at the hospital with my daughter for surgery and then go by and get her medicine i had 5 seizures most were controled only one was strong but they were so close together it scared me.I wish for a cure soon and i have only known i had eplipsey for 5 months and you all those years how do you cope with this?Thank you for you'r time.Oh what is DVT.

cindy

Posted 6/24/2006 1:19 AM (GMT 0)
Cindy,

i have lots of aches and pains - but its from my chronic myofacia pain

also... about the dilantin
i was on it for 15 years or so i believe
and really didn't want to change
but my neurologist said no woman should be on it in this day and age
that it was a good med at the time for seizure disorder
but there's too many health risks on women

i had been on it with no problems that i know of
but know that i'mon the lamictal - i've been more active
and feel more "myself" than i have in years
it's like my eyes have been opened to whats going onaround me

and i really have been a strong supporter of dilantin
because it did control my seizures
but if theres something better out there for us women
we need to check itout!
i'll just be gladwhen the price comes down on what i'm taking!
Posted 6/26/2006 8:23 PM (GMT 0)
Hi Duvlady

Thank you for you'r reply.My nuroligest gave me predizone for the pain in my wrists,arms.and legs but i decided not to take it because it's a steroid.I don't take medicine on top of medicine because i belive one knocks the other out.I just don't  see takeing 5 or 6 different kind's of medicine.All i take now is lipitor,loratab,and dilantin hopefuly i'll get by on that i'll just have to deal with the pain's.

Dose being tired or motion while you'r in a vehicle make you have seizures? I have noticed most of my seizures come when i'm realy tired or motion in the car from time to time allthough the dilantin  seemes to control them most of the time.I feel them starting and the they stop most of the time.Dose you'r medicine make you seizure free? Well i wish you all well .

cindy

 

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