Dilantin Side Effects

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Michael S.
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/28/2006 6:53 PM (GMT -6)   
Hi everyone. June 28, 2006
 
My name is Michael Stigers - and I'm a 23 year old white male. I recently started Dilantin and have searched the internet high and low for answers to so many questions; and never once did I find any true answers until finding this message board by searching through Yahoo!
 
I was originally put on Dilantin due to developing seizures that were noticable in May 2006. Until then there were never any signs of any type of seizure disorder; came out of the blue and slapped me hard! I have yet to get my EEG to look a bit further into the cause of the seizures; I'm on county insurance at the moment and it has taken about two months to get an EEG. Finally I have one on July 18th, 2006. The doctor wants to see me back on July 5, 2006 to talk to me about my bloodwork on July 3, 2006.
 
Dilantin was a nightmare for me in the beginning. I started the medication on June 19, 2006. I did not know what to expect when I took the medication. Honestly - I didn't expect how the next week would be; with side effects still lingering today nearly 2 weeks later.
 
The dose of my Dilantin was not considered "high" by many people. The doctor originally started me on 700mg the first day; and 300mg there after.
 
The first night was the beginning in what is now a constant battle in my eyes. I took the first "starter" dose of medication which was 300mg in one dose. At first I was completely caught off guard. Mind you I take a lot of medication for chronic pain - vicodin and flexeril. Of course those drugs have side effects which everyone really feels. I got "stoned" about 30 minutes after taking the initial dose. Everything had slown down - sounds were distorted and seemed "slow" - as I looked around at the passing scenery outside the window - yet again, everything was slow. When I got home about 1 hour later I immediatly fell asleep. I woke up a few hours later to take the next starter dose of medication, followed by 100mg later.
 
I woke up, and felt awful. I had pain like I had been hit by a bus. I was extremely paranoid and just in a state of false being. I didn't know the person that I was - and I was very unhappy with everything. As the days passed; I gained more side effects. I began to get extremely aggresive. Mind you; I am not a real aggresive individual - but the Dilantin brings out the beast in me. Never have I been more confrontational to any living creatures around me. The look on others faces disguted me - suddenly LIFE was a battle of being the most aggresive, unhappy, achey person on the face of the planet.
 
My sleep pattern had been ruined; I began to only get 4 hours of sleep - and still to this day only get 4 - 5 hours of sleep nightly. It didn't use to be quite like this. I could sleep an entire night through; and into the next afternoon if I wanted! I began to have a bit of trouble walking; in a way like I was drunk. I would tetter totter back and forth like a drunk hobo. My vision began to get blurry and it was hard for me to read the guide on the cable box.
 
My seizures; continued the first week of my medication - not far off from the same pattern as they did before. 5 - 9 grand mal seizures per day, constant twitching like a terret's patient. With the way I felt; I honestly wanted to throw the medication out of the window. If the most important person in my life hadn't insisted that I take the medication; I would happily flushed it down the toilet in the foul mood I was in.
 
The following week - on June 26, 2006 everything began to change. I no longer felt drunk, my vision was fine, and I wasn't AS achey as I had been the week prior. My body was actually finally beginning to "take" the medication - no longer could I call it by the nickname I had given it "poison in a pill" - it began to slow my seizures down to where now I only have 1 - 3 grand mal seizures per day; the twitching only happens in about the same fashion.
 
No longer was I slamming my head into the ground when an episode suddenly came on - things seemed a lot better. I finally had what I would consider to be a bit of "relief".
 
I do not know what the long term, or even the longer short term effects of the Dilantin will be. I know the medcation has been around since the 1930's and is used primarily for seizures. There are doctors outside the United States who use the medication for "cognitive thought" therapy. It is tried and true. I won't take new medications because the side effects aren't well known - however Dilantin has been around like my grand parents; something is going somewhat right with it. Many of the symptoms that I have mentioned; and many other people have are *not* published on medical websites; and most importantly Pfizer. It seems as though healthcare providers do not know a lot about the medication and it's side effects.
 
This message board changes that for everyone that comes across it - that is why I have babbled such a long posting. There is a great wealth of knowledge here; and I am glad I have found it and can participate.
 
- Michael Stigers
23 year old / White / Male
Unknown seizure disorder - pending more tests
Seizure Medications: Dilantin 300mg, Klonopin 1mg
 

DuvLady
Regular Member


Date Joined Feb 2006
Total Posts : 56
   Posted 6/29/2006 11:14 PM (GMT -6)   
Cindy -
 
no, i haven't noticed the car giving me any problems. i think one of the worse problems i've had is with ceiling fans that are place under lights - it creates a pattern that at first just makes me feel a bit "off" - but i now come to take precautions about things like that - usually i can find a seat somewhere where the lights aren't swirling. Fluorescent lighting is also very bad for us. Unfortunately where i work - that's what we have. but i've put in some subtle lighting in my office and have the light switch on off for the fluorescents with a big piece of tape over it - to help remind me and others!  :)
 
Michael -
 
so sorry you've had it so rough! i feel for you!
one grand mal knocks me out for 2 days - so i can't even imagine what you're going through.
good luck on those tests - i'm really hoping and praying they'llfigure out what they can do for you!
yes, my medication almost keeps me seizure-free. i haven't had one in a couple years - although i have had a couple close calls, but haven't actually gone into a seizure. My tests have never come up with anything -
i know there is some surgery available to people who have really bad uncontrollable seizures.
i didn't have bad side effects from dilantin - except when i first started on it - i was pretty out of it! ii've been on it for over 10 yrs. - but i'm really glad i got may meds changed recently to lamictal - i've been more myself than i have in 10 yrs. - the dilantin chilled me out big time! but had no complaints while on it.
 
also, there are dogs available now to those of us with very bad seizure disorder. i have a friend who was able to get one after a couple years of waiting. they're great - its like a seeing eye dog- specially trained to know when a seizure is coming on and will tug on you, etc. to let you know to lay down. isn't that amazing!!?
i know one of my dogs is very sensitive to how i'm feeling - if he was younger and had special trainign - who knows???   :)
seizure disorder - chronic myofacia pain - B-12 anemia - severe neutropenia - bulging disk in neck, etc.


Michael S.
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/29/2006 11:35 PM (GMT -6)   
Hi DuvLady,
 
Pleasure to meet you. I'd like to think in life we're all handed something different; and I suppose it's just my time to see how much I can completely take as a person.
 
The side effects of the Dilantin are slowly fading with the exception of the horrible mood swings and constant state of aggresion. Eventually in time I believe that will go down. I have to trust my doctor on this entire affair - which is quite different for me considering both of my parents are in the medical field. I have a tendency to question everything that comes out of the doctors mouth; however I need to learn to trust what he says - so that I can possibly get better.
 
Yes, there is the VNS implant surgery for those that medicine doesn't seem to work that well. Here in the states we recently had a show on TV called "Miracle Workers" - and they had installed one of the VNS implants into a woman that had a bad case of PKD to where her brain had been fried from all the constant medication. The implant completely stopped her twitching and shaking; so it does work; however I am a bit hesitant about it. I personally have a GPS/Identification chip in my arm - compliments of my parents. It contains all your medical information and of course a way to find you in case something happens. In my eyes - lol - I have enough implants already so I will only really consider surgery  and the implant unless after awhile they cannot get everything under control.
 
I'm losing my patience to some degree as the medicine has been making me feel quite ill - and the seizures and twitching although not as bad - is still going on. Perhaps I just need something to compliment the Dilantin so I'll see. I had stopped taking my Klonopin because I wanted a break from all the constant medication that I am on. I have a total of about 7 prescriptions right now - which is only going to increase as I keep going back to the doctor every 2 weeks; I'm young and I'm not wanting to blow my kidneys out of service by the time I'm 25 - so I'm giving my kidneys and liver a bit of a break.
 
I've been told the Klonopin will help with the seizures; and I'm going to pick up a refill on Monday when I go to the clinic to have my labs done; and to talk to a social worker about getting on SSI. I can't work anymore right now - and I need a bit of assistance from somewhere. I only hope it is not an uphill battle. Rent has been terribly late for awhile; cable and electricity are behind - and had to allocate rent money to take care of the two this last week or they were going to get cut off. Definatly not fun and only compounds to the way I feel right now; but yet again I suppose it is something that has been handed to me. I just hope things lighten up soon as I don't know how much more I can honestly take.
 
I never understood the concept of "being tired" - but I am very tired as a person. My "well" has dried up and there isn't one drop left for me to grab and hold onto.
 
I have been having seizures so frequently lately that i've really just grown used to it. The thing that I will never get used to is of course the pain. Sometimes I wonder if anyone else has them like I do. My neck and back are in a constant state of pain; but I'm sure a lot of that has to do with all the twitching. The last time I had a grand mal seizure was yesterday; today has simply been a few twitching episodes of about 15 minutes long; and about as bad as they can get. Some days I wonder if I'm going to make my head flop right off of my neck!
 
I will look into those dogs a bit further myself; I could definatly use something that could give me more of a precursor. I don't always get the foul taste in my mouth - and there have been many episodes that I have not been able to tell. about a week ago I was walking to the grocery store and ended up having a grand mal on the way there; someone ended up picking me up in the field and was about to call for an ambulence before I convinced em just to let me be on my way.
 
The one thing I can't handle is hitting me head so much. I wonder more and more - "when is the day going to come that I eventually pop my head open" - I'm not sounding morbid so please don't take it that way; just constantly hitting your head gets old.
 
Michael Stigers
23 yo/White/Male
Seizure Meds: Dilantin X3 Daily @ 300mg total, Klonopin X2 Daily @ 1mg total

DuvLady
Regular Member


Date Joined Feb 2006
Total Posts : 56
   Posted 6/30/2006 11:06 PM (GMT -6)   
Michael,
 
when did your seizures begin? and what triggered them initially?
 
my friend who got one of the dogs, kept falling on the same side, and had her shoulder in a brace or something most of the time.
 
i too have chronic pain - but mine is from other than seizures. I have wht's called CMP - chronic myofacia pain. it's real fun (sarcasm) - very much like fibromyalgia - if you've heard of that. I praise God each day that i'm still able to work - cause i have several friends who have it who are disabled.
 
the SSI should help - sometimes it takes a while to get it - have u already put in for it? and ... a lot of people get turned down the first time (just in case)
 
by the way... you may already know - but the computer "blinking" can also cause seizures - but on most you can shorten or lengthn the blinking time in the control panel.
 
i know whn i was first diagnosed with CMP - it felt like the end of the world. I was laying on the couch unable to move (the only place i could lay down) and was out of work for 5 wks. If it hadn't been for the strength of God (not me) i would have just given up. I am so glad that when i am weak he is strong!  its been 3 years and i'm not going to say it was easy. but i had a great dr. who kept saying "have faith" (he didn't necessarily say it was going to go away- i felt he meant it would get better - but maybe i was reading more into it)
 
anyhow... now i'm doing loads better. i'm back to my favorite hobby gardening-which i truly enjoy!! and i guess you could say that was my goal - a small one at first - just to be able to do a little gardening again. the pain was so much that at first i couldn't do more than 10-15 min. i broke my record since diagnosed this year - worked 4 hrs. one day on weekend - it wasn't a straight 4, cause i've learned to take lots of breaks - that way i can do more. but i've learned to listen to my body. i used to ignore it and just keep pushing. (i have that type A personality)
 
i'll be praying for you!
Darla
seizure disorder - chronic myofacia pain - B-12 anemia - severe neutropenia - bulging disk in neck, etc.


Michael S.
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 6/30/2006 11:24 PM (GMT -6)   
Hey Darla,

I was first put on Klonopin 2 months ago; and then Dilantin 2 weeks ago due to the "pick up" in the seizures. They grew more in frequency and more in strength as everyday went by for some reason.

Right now my doctor says I simply have a "seizure disorder" - pending more tests. I have an 8 hour (short huh) EEG on the 18th of which they told me to go ahead and carry on as normal; when I got there they were going to put in an IV to put me to sleep and wake me up as many times as they needed to. No one really knows quite yet "what" is wrong. It could have been when I was having major sugar problems I simply hit my head to many times passing out; perhaps I was in 1 to many fights - all is still pending more medical tests.

It seems all I do anymore is live at the clinic and the hospital. They have a room set up for me; and they know how difficult I can be so to make me feel a bit better they always put me in the same room. Sounds silly I know - but my parents are doctors and I'm far from ignorant on medical care - so every little thing they can do to put me at ease in some fashion they try to do.

Yes, thanks for the word - I am aware of the computer blinking. I ended up having to get a new computer and got a laptop with a high defintion plasma screen; and thankfully it has no blinking. I still find it a bit overkill that I was forced to get a laptop that the monitor is worth a small fortune; but I'm not having anymore seizures while on the computer. Of course, I'm far from rich so the TV is a simple 30" normal Sony TV. I have noticed when things come on very fast - or things such as flashing lights; I tend to get a headache or start twitching very bad. Mind you - I'm only 23, and home all the time popping one pill or another; so I have always liked to watch something called "Adult Swim" - I guess all the pills slow my brain down enough that I can be like a little kid. Lately I haven't even been able to watch it due to the animation really bothering me.

I thought getting put on SSI in the meantime until my seizures were under control would be a walk through the park; boy was I wrong. I should've known that anything going through out blessed government would take a small lifetime; I guess I was giving them the benefit of the doubt. On the 3rd - next Monday; I am going to the clinic to have my Dilantin levels checked; to pick up some prescriptions; and to have a meeting with the social worker about getting put on SSI.

I had a long battle with my lungs for quite sometime. (which could also be the case of my seizures) I had a problem called spontaneous pneumothroax - about 8 of them in a 2 year time span. I was in and out of the hospital every month or two for the longest time. I would have surgery - get a cathedar (dart) put in my chest; and a month later I'd be right back in the same spot due to them collapsing. Finally they got that under control by some degree by stapling my lungs to the inside of my ribs; and causing a bunch of scaring and such on them. I am having some more problems with them and I'm scheduled to see a pulmonologist on the 21st. The last time I was in the ER they had found some "nodules" on my lungs - meaning this time they're filled with some form of liquid or are simply hard. Yet again; pending more tests - the story of my life....

I haven't been diagnosed for anything quite yet on my major pain problems. I have problems with my back and my chest. They have me on quite a bit of vicodin right now for the pain; some simple muscle relaxers as well. Nothing ever kills the pain; but the vicodin does make it a bit more bearable I suppose to where I'm not in such a constant state of pain. Having a giant treasure chest of pills has also made it to where I can finally work through the pain; and I'm starting to work out and do other things again.

In a way - I myself am doing better with the pain - although it's a constant state of discomfort. It makes me terribly happy to hear that you are doing much better; you seem like a fighter - keep up the work; that which doesn't kill us makes us stronger they say. (honestly those that say that I don't believe have had a day of major pain in their life lol)

My favorite hobby thankfully is my computer - I'm easy to please. Give me my PC, broadband internet, and my mobile and I'm good to go for the longest time.

I'm twitching so I'm going to get off before my typing gets so bad that I can't even read it lol

Thanks for your prayers Darla, and likewise I will be praying for you.

Michael Stigers
michaelstigers@aol.com
Seizure Meds: Dilantin X3 @ 300mg total - Klonopin X2 @ 1 mg total
23 year old / white / male

DuvLady
Regular Member


Date Joined Feb 2006
Total Posts : 56
   Posted 7/3/2006 5:41 PM (GMT -6)   
Wow Michael!!!
 
you have been through way too much - to be only 23!
 
when i read that they had stapled your lungs - eeeeech!
bless you!  stupid question probably - but could that be some of the cause of your pain?
 
with my CMP (which is what i know - so i can talk about half way intelligently) i've discovered many times it begins by a surgery.
 
you are only a couple years older than my boys. josh is 21 and aaron is 20.
 
i was going to share something with you - that really hit me...
when i recently went to aaron's grad from AIDT (he wants to make movies, etc.) there was a young man who was valedictorian, who had had such bad seizures that he had finally opted for surgery.  He had excelled in music.. but after the operation (for whatever reason) he could no longer do that - but he went to AIDT and has become a graphic artist (which is what i also do) --- and i tell you - i was so impressed with him.
 
you know... for you and i - we know how hard it is.
and he just kept plugging away. the rug was pulled out from under his feet as far as his goals and dreams - but he discovered other talents he had that he could pursue.
 
so.. what kind of fights were you in? at school or professional?
my josh has done both - he is involved with mixed martial arts: kickboxing, ji jitsu, wrestling...  have you ever heard of a steel cage match?  yes, he was in one of those! and i went! and yes i did worry about a seizure - almost didn't go til the last minute - but i couldn't wait til someone called me - i figured it was better for me to be there.
 
my seizures started when i was 4. my family doesn't really talk about it. but my mom has confided in me that she thinks it started when i was in a drag race. my parents married very young, and my father took me with him everywhere - yes, even in a drag race. i loved it! but this time some old man came out into the street with a baracade and to keep from hitting him - dad had to slam on the brakes! i flew from the back seat into the metal dashboard (with my head of course) and split my head open.  my mother just about killed him that evening she tells me.
but it wasn't long after that it started
 
well.. gotta go.
you take care! stay strong!
 
seizure disorder - chronic myofacia pain - B-12 anemia - severe neutropenia - bulging disk in neck, etc.


Michael S.
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 7/4/2006 2:38 AM (GMT -6)   
Hey Duv,
 
At times I think I have been put through to much at my age. It seems as though I'm being tested in some way, shape, or form. They always say; what doesn't kill you makes you stronger - for me when my lungs didn't kill me I just went downhill from there.
 
The cause of my pain can't be pinpointed; you have to love modern medicine. My lungs do have a bit to do about it - that is pretty much a given over the entire situation. I mean - when you end up having major lung surgery twice in a short period; it is a bit rough on your body. All the tubes, and staples, and acid washes - I do agree it is a bit much. I developed something called "slipped rib syndrome" when I had the surgery. Basically; they left a piece of soft tissue inbetween my ribs and the ribs closed back up - causing some pain. I dealt with that for about two years, and then thankfully it went away!
 
I think a lot has to do with the bad epideral I received on my second surgery. That is when everything really started going down for the worst. The first surgery I didn't want one because I had always heard bad things about them. None the less - after the pain of the first surgery I was willing to do anything! When you lay in a hospital bed post op and you have 2 tubes sticking out of your side - and a basic vacuum cleaner sucking the air out of you - it's quite unpleasant. Back to what I was saying - the epideral was placed. Later that night when I had fallen asleep I was woken up from feeling a liquid all over my bad. The epideral had come out of my back and it was leaking all over the bed. I called the nurse; and that nurse shoved it back in my spine a total of three times.
 
Later that morning the doctor came in and went ape crazy. He kicked her out of my room; said she was lucky to not have paralyzed me; and that was that. I no longer had her as a nurse; and my chronic back pain started - never to go away it seems.
 
It sounds like the student that graduated with your son (congratulations by the way) received one of the new VNS implants. They are new on the market; and are completely experamental at this point. It was first developed and used in Europe. (I read a lot - and I subscribe to a lot of science magazines lol) The transplent primarily helps seizure patients; and those that medication has damaged; and PKD (parkinsons). It is a good choice for some; but with a gps chip already in my arm - I have enough for now lol
 
It is a heart lifting story to hear of the boys progress through the entire ordeal. Right now I am in the shock and feel sorry phase for everything. Everyday I ask God - "why" - "what did I do to make you so angry" - "can't I just have one day of peace" - "why you always have to play with me". I know that isn't fair, and not the best way to think; but it has honestly been one thing after the other. Two years of a lung battle; then chronic pain from the surgery; then a spat of diabetes brought on by medication; my lungs again as I will have surgery in August; COPD; find out I have had 2 heart attacks; and now I'm having crazy seizures. When I look at everything I just typed; it honestly looks like a bad fiction story - lol - I can only wish that it was! I know I just have to remain strong; and eventually it will get better. Right now it's just so hard to see past the end of my beer. (figurative speech there; I can't drink on all the narcotics and dilantin)
 
As for the fights; I was just a rowdy teenager. Calmed down now of course lol - I've turned into an "old dog" with no fight left in him unless I'm gonna have a seizure on ya! Just normal fights, car wrecks, passing out a lot while my sugar was having problems...I'm really so scrawny that I couldn't fight if I wanted to anymore! A mere 150lbs doesn't go that far ;-)
 
Congratulations on your son again - I'm very familar with kickboxing and steel cage matches. I watch them constantly on pay per view; and have even been to a few before my problems started. lol - well I think it's good that you went in support of him - it means a lot to us crazy guys to still have mom around! I think you made the best choice there was by going there - and I know it had to be hard on you for several reasons. Personally right now I've cut out some tv shows, and can't go around any real heavy flashing lights. I learned a trick though of wearing sunglasses; it seems to not effect me near as much when lights hit and the TV is on with wearing them. I don't know if anyone else has had that experience and it seems far fetched but it works!
 
Well my seizures started at the wonderous life of 23. Right when I was ready to get everything done and over with it came along and hit me like a ton of bricks. Sounds pretty rough with the head to the dashboard; gives me a headache just thinking about it! Although mine started at 23; it seems that in life I may have had some signs - it just wasn't visable quite yet. I had two problems with my head; at about 18 months my father took me to the park and I went onto the big slide and fell off and cracked my head wide open; my mother smacked me upside the head by accident when I was younger and popped it open; lots of hitting it when I had sugar problems - who really knows lol. Dispite the wreck; it's good to see you're still around!
 
See you on your next post Duv!
 
Michael Stigers
23 year old / white / male
Meds: Dilantin, Klonopin (lots more those are for the seizures)

DuvLady
Regular Member


Date Joined Feb 2006
Total Posts : 56
   Posted 7/5/2006 9:09 PM (GMT -6)   

Wow! you continue to amaze me!!!!

what else could possibly have happened to you?

do you still have problems with the diabetes also?

that epidural thing - had me wincing

what an idiot nurse! i had an epidural with Aaron (C-section)

but it was much better than the nerve block i had with Josh

nothing like what u went thru

this stupid thing is double-spacing everything - and i don't have a clue why...

did you have a good fourth?

we had a great time! went to my mother-in-laws for a cook-out and swimming - we had fun...

actually the sunglasses sound like a good thing - i can "see" that working..:)

i know when i've been to certain movies - i cover my eyes if there is a lot of flashing lights in a particular scene - most arent' bad - and i tell u - i love movies. we went to see "lakehouse" last weekend. my husband just loves sandra bullock! she has that sooo girl next door look.

sometimes i think staying so busy has been the best thing for me - especially for the pain. my husband and i run a pantry on saturday mornings for people in the area who need food. sunday morn i teach sunday school. besides working all week, i do art on the side from home some evenings... and.... on top of all that (can u believe?) we have a white bird business - i do releases for weddings, funerals and celebrations, etc.

we did a particularly beautiful wedding a few wks ago (so glad the wedding season is over). we had 2 birds in the white heart box for the bride and groom to release. as soon as they start to fly - my husband and i let ours loose on either side (4 in each box). and they all come together - circle a few times in the sky - then head back to our house. i was really nervous about this one - cause the bride wanted everything antique - so i even went out and bought some new boxes for the wedding. but it was worth it - everything went perfectly!!!

if someone had told me 10 years ago - all the things i'd be doing now - i'd have told them they were crazy! i thought after my boys were this age, we'd have some peace and quiet!  ha! (and the boys still live at home...which is fine.. i'll keep them as long as i'm able)

you said earlier you really enjoy your computer... do you play games or like particular programs?

gotta go - my sister n law brought over some dessert.


seizure disorder - chronic myofacia pain - B-12 anemia - severe neutropenia - bulging disk in neck, etc.


Caribou
New Member


Date Joined Jul 2006
Total Posts : 2
   Posted 7/22/2006 12:29 PM (GMT -6)   
I'm so glad I found this forum, it is exactly what I was looking for. I'm looking for some advice/answers on Dilantin and it's side effects. I'll try to give a (somewhat) brief synopsis here--

I was diagnosed with epilespy when I was just a few years old. I had psychomotor/complex partial seizures. I was on Mysoline the entire time I was growing up, and it didn't do a terribly good job of keeping the seizures in check. I'd have several a months even when taking my meds religiously, and if I mistakenly missed a does then I *definitely* had seizures. One day when I was about 19, I missed a dose and nothing happened. I basically took myself off meds, and the result is I had just about the same # of seizures as when I was on it. Plugged along for 2-3 years this way, then one day when I was in my early 20s I woke up and they started. They continued non-stop all day, increasing in severity. My parents took me to the E/R and while being triaged, I had 4 consecutive grand mals one after another.

I was in the hospital for the weekend, and put on Dilantin. My original dose was just 100mg a day - that was fine for 3-4 months, then I had a breakthrough seizure (the old kind, not grand mal). My dosage was increased to 200mg a day, and that worked like a charm for over 10 years. No seizures, no problems. In February of this year, I went for my bi-yearly dilantin level. Never heard anything from the doctor so I assumed everything was fine. In May, I called for a presciption refill.. and that's when I was told that in what they termed an "oversight", my level in Feb. had come back extremely low but no one called to let me know. By this time, I had moved over 1200 miles away from my doctor and did not have insurance coverage. So I argued with them for a few minutes saying I shouldn't be penalized by having to pay out of pocket for doctor/specialist visits/labs because they screwed up. As a courtesy, the filled it one more time but said no more without another level.

So I went for my level last week, convinced that what had happened in February was a fluke. Unfortunately, it came back just as low. :( My level in February was 2.9, this month it was 3.0. I am just totally baffled as to what would cause such a precipitous drop in my med levels all of a sudden. My PCP tripled my dosage as a result - I went from taking 2 pills each night to taking 3 in the AM/3 in the PM every day. I feel catatonic during the day, like I could fall out of my chair asleep at any time. The other day at work, I fell going UP the stairs (tell me how THAT happens), then about 45 minutes later I walked into a wall (doorframe actually, but still). I have been training for a marathon the past couple of months but this week has been the pits - there is absolutely no way I could come home from work then go running 4 or 5 miles. It's been very depressing.

I will be picking up insurance as of 8/1 - unfortunately everything will still be out of pocket due to a pre-existing conditions clause. mad Has anyone had a similiar experience with levels bottoming out all of a sudden? Is 600mg/day a typical dose or is it on the high end? Did your side effects increase as a result of an increased dosage? Has anyone gone off Dilantin and tried another drug, and were the result successful?

Sorry to bombard you all with this stuff - I'm just really concerned that I've literally been running around for 5+ months with such a low dosage.. plus, I'm not really pleased with this increased dosage so I would like to explore other options.

Thanks for listening.. so much for my brief synopsis. tongue
Jen

Caribou
New Member


Date Joined Jul 2006
Total Posts : 2
   Posted 7/22/2006 1:18 PM (GMT -6)   
Thanks for all the good info, Mandi!

Just wanted to clarify something - I have only had one breakthrough seizure while on Dilantin, and that was in either 1993 or 1994. Yes, my level has bottomed out to the 2.9-3.0 figures I've seen the last 5-6 months (doctor's office told me it should be between 10-20), but I have not has any seizures during that time. My concern now is the tripled dosage and how I'm feeling as a result of it. Is this something that's going to go away as my body gets used to it, or will I continue to feel like a zombie as I have this past week? If you don't mind my asking, what kind of dosages your doctors put you on? Also, again please tell me to buzz off if this is too personal..it sounds as if you ended up switching from Dilantin, ultimately, what did you end up on?

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 653
   Posted 7/23/2006 12:42 AM (GMT -6)   

Hi Jen, welcome to HW.

As Mandi said "I know many people who have been on it for years and are living a seizure-free life." Me included. (26 yrs.and counting)

I have my liver enzymes checked monthly and have had no probs. I do however have most of the other side effects from dilantin.

RE: Mandi's quote ~ " I walked around like a zombie, couldn't hold my head up, I was a shell of a person.  My anxiety was through the roof, I would run into things, stumble and fall down, suffered from extreme depression, and couldn't preform simple tasks."

At the time of my first seizure, (1979) there was not too much known about the condition and therefore not many anti-convulsive medications ~ today you have much more choices.  I was also dx'd  with Ulcerative Colitis which I also take meds for, the dilantin was the only anti-convulsant drug at that time that did not have a negative reaction to with my UC meds. For that reason alone I can't change meds.

Too bad to hear about your medical insurance issue.

 

Randy


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day


DuvLady
Regular Member


Date Joined Feb 2006
Total Posts : 56
   Posted 7/26/2006 11:12 PM (GMT -6)   
Hey Jen!  welcome!
 
i was on dilantin for 10 years. they had me taking 4 pills at night and i was also walking around like a zombie. after a month of that - i told my dr. i couldn't function - and he suggested i go down 1 pill and see how that worked. and it did -- so i stayed on 3 pills, and didn't run into things, etc. and only had maybe 3 grand mal seizures in those 10 years.
 
dilantin is an old drug - and there are much better drugs out - but dilantin does still control seizures. each person is different. my neurologist says in this day and age - no woman should be on dilantin.
 
he continued to tell me throughout the years that i wasn't at a high enough dosage but i felt as long as what i was taking was controlling the seizures that's all i was worried about - not what "they" say my blood level is.
 
take care Jen! talk to your dr. about your concerns.. and keep researching!
seizure disorder - chronic myofacia pain - B-12 anemia - severe neutropenia - bulging disk in neck, etc.


DarkshadowTDS
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/1/2006 3:04 AM (GMT -6)   
Hello Names Brent,
  I just found this forum today and was reading some of the affects of dilantan. I just got put on he meds, i was in Iraq and had 2 seizures in the same day and they flew me out of there to a hospital in Germany where they started me on the meds. He gave me about 300mg every 3-4 hours to total 900mg. I was so lost and out of it, dizzy, couldnt walk straight, couldnt lift anything heavy. He came in and told me he gave me to much and cut me off the meds for a day. Then he cut it back to 200mg a day. I havent had any seizures yet but im scared if he cuts me to far down on the meds that i will have another and if i have anymore i will be removed from the Service. What should i do ? Continue takin a lil more then what he advises or see if i have another one with 200mg a day ? Which he told me i could cut it down to one a day if i dont stop being dizzy/wobble walk.

Thanks,

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 10/1/2006 9:37 AM (GMT -6)   
Hi Brent! Welcome to Healing Well, so glad you found us! When did all this start? How long have you been on the 200mg? What branch of service are you in, you are in good hands here... Please keep us posted.. Duck
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/1/2006 10:18 PM (GMT -6)   
Brent,
 
What Branch are you in?  I was in the Army for 10 years.  Before I get to the Dilantin issue.  Let me give you this piece of advice.  Get copies of everything medical for you 201.  Now for the Dilantin, 900mg's is super high.  200mg's is better.  How long have you been on the med.  the side effects can take anywhere from 2 weeks to 2 months to go away.  Have you been put on restricted duty?  What does your profile say?  What type of seizures are you having?  Have they done an EEG?  Let us know how things are going for you.
Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Meds:  Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


DarkshadowTDS
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/2/2006 1:14 AM (GMT -6)   
Thanks for the welcomes,
 
 I'm in the Army, I've been on the 200mg for about 5 days now, its been about a week 1/2 since the 900mg thing. I dont know what is called, they said i was having convulsions? i think its spelt right, and here lately i've been seeing aura's but nothing happens. i go back to the neuroligist today  and i have to tell him about the aura's and my hands have been twitching something awful lately. I joined the army to serve it in war but with this i am non-deployable for atleast a year. I've been upset something awful.
The neuroligist is new i think, he just gave me a no-running unlimited and no swimming profile. Thats it. I stay dizzy still and the unit is acutally gettin kinda upset with me missing days without leave /pass. They dr. was suppose to put me on con leave but he never sent the paper work. what should i do ? Thanks for your help.
 
Reed

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/2/2006 8:32 AM (GMT -6)   
Good luck with the Dr. appt. be honest with them about the auras and the twitching.  don't lie to them or hold anything back.  Stay on them about the ConLeave.  I'm really surprised he didn't give you a no weapons, no run/march/swim, buddy escort profile.  email me and we'll talk more privately.
Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Meds:  Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


DarkshadowTDS
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/2/2006 1:46 PM (GMT -6)   
Hello,
 Well i went to the hopsital lil to my knowledge my neuroglist was on leave for the entire week, so they had me see a walk-in doctor who knew little of nothing. He didnt check any signs , didnt check my blood level, nothing. He sat down with me and looked at what the neuroglist done and raised my meds to 300mg's. So it was a complete waste of 4 hr trip. He didnt even know what Con leave was. So im stuck trying to get to work all dizzy and crap til the neuroglist gets back.

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/2/2006 4:19 PM (GMT -6)   
Well, the good news is that your med level is increased so maybe that will stop the auras and twitching and allow you to get back to your unit. Also, it's only a few days until your neuro gets back from leave. So, you can talk to him about ConLeave then. Good Luck. Click on my email link in my signature and email me. I have something for you that might help you.
Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Meds:  Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


DuvLady
Regular Member


Date Joined Feb 2006
Total Posts : 56
   Posted 10/3/2006 6:06 AM (GMT -6)   
Hey Dark Shadow...

welcome!
i was on dilantin for years. they just recently changed me.
let me tell you dilantin is a very good medicine. i was on 300 mg a day also.
my dr. had me take it at bedtime so a lot of the "side effects" would be gone by morning.
any more than 300 was too much for me - made me feel disoriented.
i would stay on it for now - to give you peace of mind - but there are much better meds
out there these days that won't make you feel so "out of it"

definitely you need to get that twitching checked...
have they done any nerve testing on you yet?

my husband was in the navy for 8 yrs. ... you may have to push for some of these tests etc.
definitely they need to find the cause for your seizures if possible
they came on suddenly? no accident , etc. beforehand.

there are some people i've met who only have 1 seizure
and then never have another one - perhaps you're one of those.

you shall be in my prayers! God bless
and take care of yourself - everything else will work out

Rainbow Libra
New Member


Date Joined Oct 2006
Total Posts : 1
   Posted 10/24/2006 4:47 PM (GMT -6)   
Hi everyone-new user. I'm 33/f, diagnosed with seizure disorder 7 yrs ago. I've been on Dilantin for about 2.5 yrs, the last year on 500mg/day. I too have experienced memory loss, unsteadiness when walking, and that 'out of it' feeling. I also have vivid dreams nightly, the moment I fall asleep. Does anyone else have this? My Dr. hasn't checked my Dilantin level in months, and I don't think my liver has ever been checked. Today I was prescribed Septra DS for a UTI. When reading about the drug online, it said Sulfamethoxazole and trimethoprim may increase the effects of phenytoin (Dilantin) and lead to dangerous side effects. Anyone have any experience with this? I also take (2) .5mg Klonopin daily for the jerking feeling I have, particulary when trying to read aloud or read in general. Thanks for this site. I appreciate the info.

HALO
Regular Member


Date Joined Nov 2004
Total Posts : 167
   Posted 10/24/2006 10:18 PM (GMT -6)   
Welcome to HW.  I'm glad you found us.  If you're concerned about the side effects you're feeling and maybe some potential drug interactions.  Do not be afraid to call your neuro.  That is the absolute first this you should do.  Different people experience different side effects from the same med.  Some are more sever than others.  Most will go away within a short period of time.  But, if you have any concerns what so ever....definately call your neruo right away.  I hope you find HW a welcoming and supportive site and continue to post here.
Intractible Epilepsy,7 knee surgeries, 1 shoulder surgery, compressed discs in spine, Curvature of spine, sacroiliac joint disfunction, leg length deficency. Meds:  Topamax 300mg's, Klonopin 1.5mg's, Lamictal 200 mg's
No one left behind!
RLTW!
Educate, Enlighten, and Empower!
Epilepsy Forum Co-Moderator


picocrescent
New Member


Date Joined Dec 2007
Total Posts : 7
   Posted 12/24/2007 4:48 PM (GMT -6)   
All very interesting and informative replies.  If nothing else, it shows how incredibly complicated our brains are and how difficult it is to treat brain maladies.  Out of the blue, I got a gran mal seizure in 1994 and later was diagnosed with simple partial seizure syndrome.  In that respect, I am a lot luckier than those of you who suffer gran mal seizures repeatedly.  My symptoms consist more of a tightness of the throat and muscles and skin of the face, with subtantial mental distraction, with a great sensitivity to sound, motion, odors and light.  I have been taking Dilantin since 1994.  Because I am so sensitive to it (more on that below), I have literally tried every other drug available in the U.S., but no success.  So I've had to return to Dilantin.  A U of WA seminar I saw cautioned doctors about constantly switching patients among drugs, because the effectiveness of them may diminish up returning after a failure.  That's my case with Dilantin.  I worked reliably for years, but after trying the last other drug available (Lyrica) last year, I've had a terrible time getting Dilantin to work right.  Sometimes I'm in my seizure state all day.  Can no longer drive.  My side effects include:  Substantial loss of mental acuity, poor memory, hand tremors, substantial constant fatigue, difficulty in communicating at times, swollen gums, very embarrassing substantial excess coarse hair growth on my torso (front and especially back -- I'm male), poor balance, substantial and unpredictable moodiness (offset somewhat by depression-control medication), greatly altered sleep patterns (often unable to sleep until 4 or 5 AM no matter how fatigued), bone loss, substantial peripheral neuropathy (feet are almost completely numb and now my hands are becoming numb), and recently impotency (confirmed that Dilantin was the cause after numerous tests and witholding various other drugs).  Cannot work, has affected my marriage (the impotency is really tough), and makes it very hard to socialize.  I really appreciate the encouraging and upbeat messages that many have conveyed.  For me, life consists of making sure I get from 8 AM to 8 AM each day, trying to minimize problems, keeping myself on as even a keel as I can, and trying not to be too much of a burden on my family.

loveslight57
New Member


Date Joined Aug 2007
Total Posts : 12
   Posted Yesterday 11:02 AM (GMT -6)   
There is a problem with a doctor who doesn't check the dilantin levels in months. Especially after Pzifer put out the new formulation with the half orange half white capsule. I had a toxic reaction when my levels rose too high after starting it. Please have your level checked.

stephw
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/4/2010 10:05 PM (GMT -6)   
hello everyone,

I was doing some research on here one day and came across this website and was reading all of these post and decided to join and add mine maybe some of you can help me. I am 21 years old and my mother has been haveing seizures my whole life and even many years before me and when i was young i didnt really understand what was goin on she stoped haven them without any medicine for about 10 years then the past 5 or 6 years she has been haveing them again and i never done research till now about a week ago my mother was standing on the back porch and all of a sudden it hit here she fell to the ground haveing a seizure me and my dad were so scared im not sure exactly what kind she had cause where we live doctors know NOTHING!!!!! she was talkin to us that day then all of a sudden she stiffed up and fell over shaking and jerkin foaming out the mouth totally out of sorts and she stoped breathing then about 2 mins not breathing she started breathing again didnt know who i was or my dad didnt know anything so we called an ambulance and she was in the hospital for 4 days they put her on dilantin and i live in constant fear that she is goin to have another one! i worry all day all night i never leave her side. so if anyone can answer my questions about the % rate of haveing another seisuze while taking dilantin and can a seisuze kill you just any info about them and the medicine would help me out and kinda give me and mom some peace cause she also lives in fear doctors down here really dont explain anything so we would be greatfull if someone could help!!!



thanks,
steph
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