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Global Patient Feedback for Dilantin (Phenytoin) ( Post a comment )
Question/Comment:
For others who may come to this site, my story is this. At age 21 I started having seizures (deja vu, smell of ether, nausea and then passing out - almost the same progression every time). I had doctors treat me for everything from hiatal hernia to psychological disorder. At age 23 I serendipitously came across a med student who described my symptoms to his neurological professor. Without even seeing me the doctor thought it might have been injury caused.
After a five minute visit (and without any further tests) he announced it was probably "injury-induced epilepsy", most likely in the left temporal area. I asked if he needed to take any tests. He said, "Only if you want to waste the money." I asked for an X-ray. Sure enough, there was a very small bit of calcium deposit that was acting as a "control". When my blood became too thick it would cause a blockage and the symptoms (up to passing out).
Apparently this is a more common situation than most folks are aware. Kids are constantly "bonking heads" on something while growing up. Mine was probably a specific sports injury (where I was knocked unconscious when I hit a bolt on a wall during a basketball game).
I am now 60 years old, and have taken several meds over the years, but Dilantin has been the most effective. Even with that, I have to watch my weight, get plenty of sleep, keep stress low, and avoid caffeine drinks like the plague. And yes, I need to take care of my teeth, drink plenty of fluids to protect the liver, and do as many mental exercises as possible to stay on top of those possible effects.
All in all, it's been a great life, even with the meds.
61 year old Male
Posted: 2009-05-08 12:54:52
Answer/Reply:
WOW I REALLY NEVER READ ADS OR COMMENTS ON PAGES BUT I HAPPEN TO READ UR COLUMN ON WHAT HAPPENED TO WOW.. I AM SO SURPRISED BY IT.. GOOD LUCK AND TAKE GOOD CARE OF YOURSELF.. U ARE IN AN ADVANCE AGE SO U HAVE TO BE MORE CAUTIOUS.IAM 47 I ALSO DRINK DILATIN AND PHENOBARBITAL FOR MY EPILEPSY.GOD BLESS
47 year old Male
Posted: 2009-05-18 14:41:00
Answer/Reply:
I read in a local newspaper that the new types of Dilantin have epiniphrine in them, the same drug that they took off the shelves because it was widely used in making methamphetamine. The product taken off was Sudafed with epiniphrine in it, now replaced with another drug. If this keeps your blood from clotting, it would be a good idea (the dilantin, that is) to keep taking it. I would hate to think that I was dependent on a meth-type of drug but I am sure there are alternatives and different types of blood thinners out there and drugs that keep your blood from clotting in the first place.
50 year old Male
Posted: 2009-05-30 21:13:11
Answer/Reply:
I recently just had my first Cat scan and still have to get the consult with my Dr. first since I've been having theses things they call seizures 50yrs and i still don't like 2 have them but have not had one in yrs but still get warnings from time to time and i hate it keep the faith peace.
51 year old Male
Posted: 2009-06-07 21:19:26
Question/Comment:
I was rushed to the hospital Oct. 2008 after I was found in my home passed out. I was diagnosed with Herpes Symplex Encephalitis. I was told I had at least 3 grandmal sezuires. I was prescribes dilantin. What I don't understand is after 3 MRI's and 2 Catscans I show no irregularities in my brain pattern that would cause sezuires. Is there any dangers to continue to take Dilantin?
65 year old female
66 year old Female
Posted: 2009-05-07 11:29:22
Answer/Reply:
Not in my opinion. I started on Dilantin in the Hosp. in July, 2002 and have had no ill affects from it. Recently though, I switched Health Carriers and have once again been thoroughly reviewed, MRI'd and PET scanned. I visited with a Neuro Surgeon who left it up to me if I'd like to discontinue it or not.
Not many months back, I was switched from Dilantin to Phenytoin which was formerly the same formula as Dilantin. Dilantin had changed formula so they didn't want me to change at the time.
I am still having no troubles with it so I am not the best recommedation source but you might just check the formula aspect with your Doctor.
moigh
58 year old Female
Posted: 2009-05-18 17:18:51
Answer/Reply:
My grandmal seizure experiences began with a viral infection in 1986, no irregularities were ever found in my brain pattern. It was frustrating for my test results to show normal, normal, normal when I was not, not, not! I have taken Phenobarbital, Tegretol, and Dilantin. I like Dilantin the best. I have few side effects after taking it for 17 years. I was able to take a minimal dose for the first eight years, taking 100 mg daily at night, keeping a blood dilantin level of 8. Taking estrogen for menopause changed my body chemistry resulting in seizures and now I must take an alternating dose of 300 mg one night then 400 mg the next which keeps my blood dilantin level at 17. When I took 400 mg each night my blood dilantin level rose to 34. Alternating the dosage takes the dilantin level to a therapeutic level. At first I felt slow, after a short time my body and mind adjusted to the higher level.
55 year old Female
Posted: 2009-05-19 00:39:02
Answer/Reply:
I'm 56 got head injury in my 20's.Beentaking Dilantin a long time. Work's for me. Renee
57 year old Female
Posted: 2009-05-19 12:28:14
Answer/Reply:
To this lovely spring chicken of 65 years, As someone whom has battled seizures for 35 years, I know yourquestion well. Even after each of my grand mals, immediate trips to the hospital never showed antyhing wrong, until one day, exhausted, I fell asleep during an eeg, brain wave exam.There she was. So all attempts to duplicate this was done with "sleep deprived" eeg's after that. Each time the focus was foundin the right temporal lobe of my brain.
Unlike most,who don't knowhow this all started, I knew. The problem was getting my neurologist to listen. Brain surgery was indicated and schedualled. At 19 years old I had broken my neck in a gymnastic accident. Holes were drilled in each side of my skull, and I was put into traction of the neck, as a "halo" device was not invented yet. One morning the tongs came out and the doc came in and re-set the tongs back to original tightness. He worked very hard to save my life. It is a debt i can never repay. 9 years later, married, with 2 young sons, my seizure nightmare started. The day of surgury prooved my point. There was a "white spot" on my grey duramatter, brain tissue. So, being wide awake for the eight and a half hour surgery, I asked, "what was that white spot?' Necrotic brain tissue came the reply. DEAD brain tissue is the translation, right where the tongs penetrated my right side of the brain, 9 years before, causing my seizures.
I have been on Dilantin for this past 34 years with very little complication. My advice to you,my lovely spring chicken of 65 years, Take the dilantin. Peace Love & Light, Brian.
61 year old Male
Posted: 2009-05-20 13:35:53
Answer/Reply:
no I started on dilantin at 16 yrs now 54 not a problem
55 year old Male
Posted: 2009-05-25 14:42:59
Answer/Reply:
My experience with Dilantin is this, I was diagnosed with a siezural disorder (Epilepsy with unknown cause) in 1992. I was having Simple Partial siezures with ocassional Grand Mal siezures. The only side effects I have had is my gums growing and I have noticed that I don't pick up on things as quick as I used to. This was marginal, others can't tell but I can. So make sure you brush your teeth well to slow down the growing gums. I have been siezure free for 8 years on this medication. and the only reason I had the last one was that I had gained weight. 50 pounds due to marriage and the best food I have had cooked by my wife. So my medication to weight ratio was off. I have had a couple of MRI's and the doctors/neurologists have never found anything wrong in them, and I have never had head trauma. They did tell me to limit my caffine intake. Caffine seems to affect the effectiveness of Dilantin. Take Folic Acid (I was told that Dilantin uses Folic Acid in the body to help break down the medication and it helps to take suppliments), and to make sure I have good dental hygene and keep up with my checkups. Hope that helps
BTW I have found out that MSG seems to effect my signs of siezures through careful monitoring of my diet...Don't know for sure how, but I always get deja vu feelings after eating things with MSG in it. That deja vu feeling was one of the precursers to my siezures starting.
37 year old Male
Posted: 2009-06-06 20:34:23
Question/Comment:
I had a seizure due to a brain tumor (cancer). This was the first one and I was taken to the hospital. They loaded me up with dilantin and as a result it messed up my chemo treatments. I am now on Keppra and dilantin as they have to wein me off of the dilantin. Too many cooks, if you know what I mean
69 year old Male
Posted: 2009-02-23 22:18:11
Answer/Reply:
I have been on dilantin for 50 years and lately when I take it..well..i feel sick.The other day when I took the morning dosage i got sick in the shopping center.And lately..I have been unable to sleep because I am going thru a crisis with this house...the landlord told us that he has been unable to make the payments...and he wants to give it back to the bank and they will put it in foreclosure...I also have been crying a lot because one of my cats was put to sleep.I had her for 14 years and it has been too much to take..do you think it is because of my money problems that I am having trouble? Please help me..thanks..
62 year old Female
Posted: 2009-03-05 23:56:52
iGuard.org Answer/Reply:
Be thankful that you are getting off the dilantin. I have been taking it for 39 years and the long term side effects are horrible. Problems with teeth and gums, weak bones, hair growth where you'd rather not have it if you are a woman. I would give anything to find something that would work as well as Dilantin so that I can kiss it good-bye.
Posted: 2009-03-17 20:05:26
Question/Comment:
my levels is 13 is that ok with dilantin
68 year old Male
Posted: 2009-01-29 17:55:57
Answer/Reply:
levels of 10 - 20 are in the theraputic range. I feel best when my levels are around 12 - 13. anything higher or lower i feel sooooo tired. if my ranges are high i clench my jaw and grind my teeth, almost like being on speed. at a 38 blood level (my dr. ODed me) your are 2 points away from dialysis and feel drunk, staggering, can't talk and can't stay awake -rag doll.
At a thirteen, if you are me, it's just the right level.
Bambi
52 year old Female
Posted: 2009-03-18 20:44:02
Question/Comment:
I am a 38 y/o female. I started taking Dilantin at the age of 15 for epilepsy.I see my physician on a regular basis, (once monthly). He checks my dilantin level every time. I take 300 mg in the morning and 300 mg at night. I am concerned now that it is beginning to mess with my liver. I have heard that Dilantin can affect the liver. Is this true? If it is, how is that fixed?
39 year old Female
Posted: 2009-01-11 09:20:06
iGuard.org Answer/Reply:
change meds
Posted: 2009-03-11 02:12:19
Question/Comment:
I took Dilantin and Phenotyin for 50 years on the orders of MDs and Neurologists. It has not been good!! Yes, it controlled the seizures, but now I have Peripheral Neuropathy and upper and lower dentures (since I was 34). My balance has permanently been damaged (I walk like I'm drunk). All these lovely side effects due to Dilantin. For the last 5 years I've been on another anti seizure medicine and it has been a joy. I would rate it as one of the worst medicines I've ever taken.
64 year old Female
Posted: 2008-12-30 03:45:24
Answer/Reply:
Phenotyin is used for seizures also but from my experience it did not protect me as well as Dilantin did.
51 year old Female
Posted: 2009-03-13 15:44:58
Answer/Reply:
Phenotyin is used for seizures also but from my experience it did not protect me as well as Dilantin did.I have never known of the unbalance due to Dilantin.Have you been checked for MS?
51 year old Female
Posted: 2009-03-13 15:45:37
Question/Comment:
I am a 21 yr old female, i started having seizures when i was 16yrs old. I have had 2 MRI's, plenty of EKG's and CT scans. Which none have gave me answers as to why im having these seizures. My neurologist put me on dilantin for about 2 yrs, i stopped having seizures, so he said i could stop taking them. While taking dilantin I was doing fine..no headaches,fevers or anything. I was doing fine while off of it for 2yrs, but they came back, so im back on my meds, but this time I have been feeling very depressed for no specific reason. Could it be that since i stopped taking them for so long my body isn't used to them anymore so it's making me feel this way?
22 year old Female
Posted: 2008-12-08 20:15:43
Answer/Reply:
There is a possibility that you could be feeling the affects because you haven't taken the phenytoin in quite some time. But, I would think that the affects would be happening because of your age more than anything else. There is a great hormonal change that happens in women between the ages you described. But, that is only one theory. It is also a possibility that the phenytoin will no longer work on you like it used to. You generally don't build up a resistance to a drug like this in a two year span. And especially not after you have been off for that same length of time. Your best bet is to speak with your neurologist because there have been many new drugs introduced in the short time that you have been off of the pheny..........good luck
39 year old Male
Posted: 2008-12-20 23:41:57
Question/Comment:
I started having seizures at the age of 21. I have went to countless neurologist and had MRIs, CT Scans and EEGs. I never once got a reason for me having seizures. I am now 27 and still having seizures and still have no answers to the reason why. I have been told that they are stressed induced and also been told that I have a super sensitivity to addrenaline and that is why I have seizures. I have just started taking Dilantin and so far it is not helping anymore than any other med. I know there is a cause of my seizures and I am getting tired of having no answers.
28 year old Female
Posted: 2008-11-19 08:57:33
iGuard.org Answer/Reply:
I know what you mean. I just had a 4 day stay in the hospital for video EEG monitoring. They were able to tell my seizures were coming from more than one portion of the brain at once so the temporal lobe removal surgery was out of the question. They are weaning me off Dilantin now because of it causing bone loss and other side effects. I am now on Keppra but I too still have the seizures. Check out www.epilepsyadvocate.com for more info on surgeries availlable and other treatments. I wish you all God's blessings.
Posted: 2008-11-20 05:59:44
iGuard.org Answer/Reply:
Im a 33 yr. old man, I started having seizures two yrs. ago. There have only been 3 but after eeg's and mri's nobody could tell me why they started. Only that I couldn't drive or drink, and that I had to watch what other meds i took. I never had any head trauma, so i couldn't realize why me. I have never like taking pills so keeping up with my meds was hard. I did realize when i missed taking my pills and started back thats when i would have the seizures. I started loosing my hair n spots all over my head and started going through a depression.Today i have not been taking any pills for the last 6 months and have been seizure free. One thing i did learn in the docters office by reading medical magazines was that seizures are stress related. So i have been reducing different stresses n my life and not holding everything n and its working for me. Reduce stress and it will help.
Posted: 2008-11-21 20:05:23
iGuard.org Answer/Reply:
some people i know are taking more than one seizure med so just do what your drs.tell you and make sure you visit the dentist regularly .
Posted: 2008-12-05 11:51:28
iGuard.org Answer/Reply:
Were you ever in a accident? Or did you ever hurt your head while in sports or on a bicycle?
Either of these could be a contributing to the cause of the seizures. Keep a log and make note
of any activities where you are more likely to have a seizure and let your neurologist know.
They can only help you if you report the seizures. If you can make note of what you were doing right before a seizure you may see a pattern and be able to identify what can bring your seizure on. I have noticed heat exposure and also when I do anything that brings my pulse too high
can cause a seizure. Everyone is different.
Posted: 2009-01-07 15:56:51
Question/Comment:
My daughters father was killed a yr ago & I was devastated i didnt eat i lost bout 25 pds in 3mths i couldnt eat anything because of my depression. I caught my 1st seizure 6mths after he died and 1st they said it was a panic attack then after that i was having seizures all the time so the doc put me on dilatin im takin 300mg a day til this day they dont know what is causing them i had a eeg and a mri done and still they havent told me anything. I just wanna know why am i catching them now im 24 and never had a seizure in my life. How can this be? am i gonna be on this forever? How am i supose to go out im young i wanna go out with my find and have a drink or 2 but my doc says i cant. That makes me sad and depressed because i do wanna go out have fun with no worries but now i have be worring bout my meds and not having a seizure!
25 year old Female
Posted: 2008-11-11 11:47:07
iGuard.org Answer/Reply:
I know how you feel. I am now 27 ,but started having seizures when I was 21 after my divorse. I too have had eegs, cat scans, and mris and they have no reason why I am having seizures. I know you asked if you would have to be on the medicine forever and I really can't answer that but I do know that I am still to this day struggling with them. I can go years without having one then out of no where they start up again. In the past month I have been having them 3, 4 and even 5 in a row about every three days or so. Still no one can tell me why and can't control them. People treat me like I am crazy because there is no real reson for me to have them. I have learned to deal and am still looking for an answer.
Posted: 2008-11-13 09:51:17
iGuard.org Answer/Reply:
I am 34y/o female who also never had seizures until I experienced devastating circustances almost exactly like yours. Not only did I lose my soul mate and the only dad my daughter has ever had, I lost my dad and uncle w/in a couple mths too. Then all kinds of crazy things started happening. I was told after EEGs MRIs CTs ect the seizures were stress induced. That's it. Noone will or can answer if I will ever be able to stop taking Dilantin (400mg/day) I could care less if I ever go out again, I just worry about problems with my health from all the "Big Hitters' I have to take ie Dilantin Seroquil 600mg Topamax200mg Effexor 150mg and Ativan 1mg prn. I don't know if the miserable cycle ever ends.
Posted: 2009-01-06 16:50:06
iGuard.org Answer/Reply:
you can still enjoyed life with your friends but don't drink..me also have epilepsy.. since I was 18 years of age until now I'm still taking medicine, but I enjoyed my life by going out everyday, chatting with old and new friends, I go to the mall alone and have fun shopping.
but it was before, since I take dilantin I walk like a drunk, and feel dizzy everyday. I never this way before until I my Doctor change my medicine from Tegretol and topamax to dilantin. Now I'm scared to go out alone. But I still try to live like normal people. Although I feel dizzy everyday and I don't wan my love one's to get pity on me, so I try my best that they will not notice that I'm not feeling well.
Posted: 2009-01-27 00:10:49
Question/Comment:
My daughters father was killed a yr ago & I was devastated i didnt eat i lost bout 25 pds in 3mths i couldnt eat anything because of my depression. I caught my 1st seizure 6mths after he died and 1st they said it was a panic attack then after that i was having seizures all the time so the doc put me on dilatin im takin 300mg a day til this day they dont know what is causing them i had a eeg and a mri done and still they havent told me anything. I just wanna know why am i catching them now im 24 and never had a seizure in my life. How can this be? am i gonna be on this forever? How am i supose to go out im young i wanna go out with my find and have a drink or 2 but my doc says i cant. Tssed because my
25 year old Female
Posted: 2008-11-11 11:44:52
Question/Comment:
my sister was on dilantin and her levels were low so the doctor up the dosage to 3 times a day and then he took her off of it months later she had two bad seizures and a light seizure afterwards. resulting in a hospital stay and ambulance ride each time and then she was put back on it but they still cant tell us why she is having these seizures test after test nothing.
42 year old Female
Posted: 2008-06-28 19:37:25
Answer/Reply:
Has your sister had a EEG? What about an MRI? Also, was she is any car accidents or had any head injuries? My friend had a stroke and it seemed like she was having seizures but they found out she has sleep apnea. Her body jerks as she is starting to go to sleep and when her air flow is obstructed she looks like she is having a seizure. I hope by now the doctors have found the reason behind her seizures.
53 year old Female
Posted: 2008-09-23 22:40:22
Answer/Reply:
My son has seizures and has had them also for a long time. They have taken test after test and can not find a reason why he is having seizures.
they have added other medicinies such as: Valpriic Acid, Topamax, and just recently ,Transzene. Since he has started these he had had more seizures that he first started with. I am beginning to think that this is due to some of these medications. I do not know what to think. I wish that he had never started any it. By the way he is 18 years old. Female Mom 48
19 year old Male
Posted: 2008-12-21 10:51:12
Question/Comment:
I've been on Dilantin for 43 yrs. and have had good success in controling my seizures. I have used the generic and had major problems with elevated liver enzymes, depression. I have just recently went back to brand dilantin and have felt much better. To all of those taking this med, take good care of your mouth, always take your meds on time, keep up with your bloodwork and maintain consult with your neurologist. The Epilepsy Foundation is out there to help us when we aren't able to get these necessary things done.
62 year old Female
Posted: 2008-05-12 07:15:38
Answer/Reply:
I have been on Dilantin for 42 years plus! It was the one medication that really helped with my seizures until I had to have brain surgery. I have been seizure free for 6 years now and still take Dilantin. I wish I had known to take better care of my mouth when I was younger because I fear I will lose some teeth due to gum disease. These teeth are in the front! I drank a lot of Coca Cola while in college to stay awake due to the sedative effects of Dilantin. I have always taken the brand name of Dilantin because my doctor said not to change for fear it would not control the seizures as well. All in all, life has been good even with the challenges of having epilepsy!
53 year old Female
Posted: 2008-09-23 22:37:35
Question/Comment:
MAKE SURE TO PRACTICE GOOD ORAL HYGIENE
43 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
dont take it if you dont have to.I still had seisures on the generic had to take brand name
43 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
My only suggestion(s) to others is not to be afraid to ask questions. Esp. concerning the interactions w/ other meds, both OTC & prscribed.
51 year old Male
Posted: 2008-03-10 00:00:00
Question/Comment:
take same time every day, do not stop taking
60 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
Warns not to take tums at same time, but taking med triggers need for trums
88 year old Male
Posted: 2008-03-10 00:00:00
Question/Comment:
this is a great way to prevent seizures. I am very happy with how this treatment works
30 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
make sure u take the right amount
59 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
take name do not skip any doses
55 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
Be sure you absolutely need to be on this medication
61 year old Male
Posted: 2008-03-10 00:00:00
Question/Comment:
I just went off Dilantin, but took Dilantin for 3 years to prevent future seizures that were caused by a brain hemorrhage - a one time occurrance. Dilantin did not cause me any bad effects - other anti-seizure drugs did. My advice is to read about the prescribed drug on the Internet at medical sites and follow the guidelines very carefully.
72 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
take your medication when directed
36 year old Male
Posted: 2008-03-10 00:00:00
Question/Comment:
If you have any questions about side effects~ask first! There are lots of other anti-seizure medications available now and maybe you would be better off with another one.
53 year old Female
Posted: 2008-03-10 00:00:00
Question/Comment:
I found Dilantin preferable over Tegretol and Phenobarbital. I would take it for six months to assess how it is affecting both the mind and the body. Dilantin levels must be monitored at first. My level triples if I take 400 mg daily. I have to alternate my daily dose with 300 mg one day and 400 mg the next to achieve the dosage that keeps me seizure free.
55 year old Female
Posted: 2008-03-10 00:00:00
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