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Long term effects of Dilantin

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Posted 4/14/2005 4:25 AM (GMT 0)
Hello all.  I have been on Dilantin for Epilepsy for 15 years now.  Have any of you been on this a long time and had any side effects?  My stomach is hurting me and I wanted to know if you faced this.  Thanks for your help.
Posted 4/14/2005 4:32 AM (GMT 0)
Thanks for the response. No, I haven't had any of those side effects (fingers crossed) but I've gotten stomach pain all of a sudden. It's like how your stomach feels when you are really hungry, except I feel that all the time. Does this mean anythingto you?
Posted 4/14/2005 11:08 AM (GMT 0)
Could these be related to stomach pain?
Posted 4/14/2005 4:08 PM (GMT 0)

ttwofour,

I've been on dilantin for 26 years now and although I haven't had any stomach pain from it, I have had other symptoms.      You should talk to your Doc. about this and maybe he can find another med for you.(I'm not in the medical profession so I'm only going on past experiences)

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 26 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 dysfunction, to name a few.

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

 

Randy (Ontario)

Posted 4/14/2005 4:18 PM (GMT 0)
ED? Doesn't sound pleasant. How do you deal?
Posted 4/14/2005 4:33 PM (GMT 0)
I took Dilantin 300 mg per day for 23 years. There were no appreciable side effects. BUt since I stopped taking it 3 months ago because my Dr thought I could do without it, I have begun to have body and head twitches which have in turn caused a great deal of anxiety. I have had no seizures and the doc wants to keep me off if he can. But i need to find out what all this other activity is now. I'm taking Ativan to help me cope.

Posted 4/14/2005 4:39 PM (GMT 0)

ttwofour,

I also have been concerned about long term effects that the dilantin would have on my body.

When I discussed this with my neurologist he said there was no documented proof that it caused any long term effects. (I don't believe him though)

He also told me that after being on it for so long, if I were to stop taking it or change meds, I would run the risk of lower brain stem damage and/or my seizures could come back even worse.

My seizures have been under control for 26 years so I figure if it's not broke. don't fix it.

Randy

Posted 4/14/2005 4:59 PM (GMT 0)
What is all of your average mgs/day you take? I'm at 1300/day for Epilepsy (plus 3600/day for Chrons) and I've wondered for a long time how much is too much. Any thoughts?
Posted 4/14/2005 7:05 PM (GMT 0)

ttwofour

I also have Ulcerative Colitis (similar to CD)

It's a documented fact that people who have seizure conditions are the most likely people to develope some sort of GI or bowel disorder. Scientists THINK it's brought on by stress. (As documented in the Canadian Medical Journal) They both are asually diagnosed around the same time.

I'm also on other meds for my EP and UC that work with the dilantin so as a result, I'm probably not taking as much dilantin as you. I also take a mood stabilizer "Celexa" I just started that a month ago.

My meds and doseage are listed at the bottom under my signature.

Randy

Posted 4/14/2005 7:09 PM (GMT 0)
How have you found additional stress effecting your condition? I'm getting married soon and my stress level has gone up tremendously.
Posted 4/14/2005 8:00 PM (GMT 0)

ttwofour

The additional stress causes the adrenal gland to produce a lot more adrenalin witch is an acid, it eats through the lining of the stomach and bowel and also causes more nerve mis fires in the brain. (check with your Doctor,this is only my experience)

Randy

Posted 4/14/2005 8:04 PM (GMT 0)
What are some ways I can reduce my stress?
Posted 4/14/2005 8:21 PM (GMT 0)

ttwofour

I don't know, it's different for everybody because everybody's body reacts differently to stress.

Suggestion, don't get married and quit your job. LOL

Posted 4/15/2005 3:31 AM (GMT 0)
Have any of you heard of Lamictal?
Posted 4/15/2005 4:40 AM (GMT 0)
ttwofour, I'm taking 300mg dilantin 500mg lamictal and 400mg zonegran a day now. I've taken dilantin for about 15 years. The worst side effects I've had from dilantin is discoloring of my teeth and my bones may be a bit more brittle. I'm not sure about the bones because I may just break them in the seizures more. Lamictal, I don't know if it does any good for me at all. I've taken it for about 1.5 years. After taking it for a few months I got a really bad head ache. I don't know if that was from lamictal either but in the hospital it was reduced a little and raised slower and I didn't get them again.

Posted 4/15/2005 10:59 AM (GMT 0)
ttwofour,

I know how you feel about the getting married and the stress part.
I got engaged in May, started looking for houses and planning a wedding all at the same time. In July my seizures came at me in full force. I havent had one in 15 years before that.
Fortunately, the joke about not working really is true. It takes the stress out of everything. All except the $$$ part. My job wouldnt hold my position for me so I've been out of work since then. Which really isnt so bad. I get to work on my epilepsy instead of worrying about having a seizure at work when I'm majorly stressing or whatever.
The only advise I can give you on dealing with stress is finding someone to talk to that understands what you are going thru. That is why I found this. Even tho my family is there for me they have no clue what I'm going thru.
So therefore, if you feel the need to kick and scream...more than likely someone is one here to come back and reply to you.
Posted 4/15/2005 4:25 PM (GMT 0)

ttwofour-  I was on Dilantin for 8 years and was recently taken off it. 

As far as the stomach pain problem - let me tell you what happened to me.  I never really had a problem with eating before, just occasional indigestion, something I took tums or an occasional rolaids... but I was started on Dilantin and about a year later I had severe pain that eventually led me to have my gallbladder removed.  The surgeon said I was having gallbladder attacks.  When it was removed, they didn't find stones.  I suspected maybe it wasn't my gallbladder that was causing the pain.  But anyway, the pain seemed to go away and I thought nothing of it.

Then several months later, the pain returned again, worse than ever.  This time, I had the pain with a burning heartburn sensation.  This led to my seeing a gastroenterologist and eventually getting a scope down my throat.  He said I had a lot of acid in my stomach that was coming up into my esophagus and that was causing the burning heartburn sensation. He prescribed Reglan to help my stomach to "empty" all that acid which helped a lot but also triggered my seizures!

I struggled with the pain for about 4 years before I just got used to it...

JayJ-  I too was on the Dilantin, Lamictal, Zonegran combo (among others) and it wasn't until I upped my Zonegran to 300gms/d that I had terrific pounding headaches every day.  I still have headaches, even with reducing the dose, but if it's reduced  any more I'm afraid the complex partials will be triggered to come back.  I have simple partials now... what a life! 

Glenda  :-)  

Posted 4/15/2005 8:41 PM (GMT 0)
To your knowledge, is lifting weights a no-no with seizures, or is it totally unrelated?
Posted 4/17/2005 5:44 PM (GMT 0)

ttwofour,

You mentioned that you were getting alot of acid reflux and had to take antacids and Tums. A lot of times this extra production of acid isn't from the food you eat but instead it is caused by long periods of stress, causing the adrenal gland to produce more adrenelin(which is an acid)and as I mentioned before, can also trigger seizures.(as per 26 yrs of past experience)

Lifting weights I can't tell you but I'm told that excercise is a good thing.

Did you know that it is a scientific fact that epilepsy and ulcerative colitis/acid reflux and/or other types of IBS go hand in hand, usually brought on by a long periods (years) of stress.

 

My case has been published in the Canadian Medical Journal.

 

 

Randy

cool cool cool cool cool

Posted 4/17/2005 8:06 PM (GMT 0)

Jennifer,

It's not on line, It was from 1986 and the original version of the Journal has been ammended several times.

When I see my neourologist again in July (or sooner if I can get in) for my regular 6 month check up, I'll ask him if he can me a copy or if it is on line, maybe he can show me where to find it.

Randy

Posted 4/18/2005 12:00 AM (GMT 0)
So basically stress can cause seizures? Great, now that gives me one more thing to worry about! Thinking about this is going to cause me stress. I'm going to be stressing out over the possibility of stressing. AHHH!!!
Posted 5/9/2011 1:00 PM (GMT 0)
I had been on a massive dose dilantin,peganone and phenobarbital from the ages of 7-17 for petit mal seizures that rarely happened and which this medication had no effect. Granted it was the 50's but to me the doctors had made made some very unwise and irresponsible decisions. It did do quite a number on my mental development and ability to think which I've gotten over. The other main concern is that it also affected my physical development. I am extremely thin similar to a womans' skeletal size. I firmly believe that it altered my normal physical development process. Do you know of any other similar documented cases? Thanks!!
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