30 yrs epileptic

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stan49
New Member


Date Joined Feb 2006
Total Posts : 4
   Posted 2/26/2006 9:18 PM (GMT -7)   
I just found this site.After dealing with epilepsy for 30 years virtually alone in the strugle,I was fascinated to find so many people here.dont know if I can help any of you but I can tell you that life goes on ..since I was diagnosed I have gone thru the med changes,the hopeless feelings,marriage,raising 2 children,having seizures in public and at work, endless bloodtests ,brain scans, eeg's and lots of other seemingly unfair or unpleasant aspects of dealing with this condition.Still I think that in many ways it has made me a much more compassonate person and I find that I dont take everyday life for granted the way that other people do.I have been on Dilantin for 25 years with great success but not without some side affects.I prefer the side affects to the seizures any time.

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/26/2006 10:15 PM (GMT -7)   
stan49 said...
 I think that in many ways it has made me a much more compassonate person and I find that I dont take everyday life for granted the way that other people do.I have been on Dilantin for 25 years with great success but not without some side affects.I prefer the side affects to the seizures any time.
 Stan ~ I too have been on dilantin combined with other meds since 1979 and I too have had great success with tons of side effects (but not as bad as having seizures).
 
There are LOTS of great ppl on this board to share experiences with, who knows ~ maybe you'll get something positive from it.
 
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


PositivePerson
Regular Member


Date Joined Feb 2006
Total Posts : 84
   Posted 2/27/2006 8:38 AM (GMT -7)   
Hi: I beat you by 9 years .I have epilepsy 39 yrs. I am allergic to dilantin. I am allergic to most meds.
I am trying alternative medication right now.Thou I am still on Mysoline and Lyrcia. If the alternate meds don't work I will try the biofeedback. I have had it with the medical drs. I had a vns inplant,my dr took me off the meds totally ,since I was such a success and I broke my leeds with a violent grand mal. I have absence , abscence clusters and grand mal. I am tired of being over medicated.

The canadaian Drs said they could operate and stop the grand mals, but they are not the major problem, so I have never had a major operation. I am american thou , and living in Oregon. A state which truly believes in alternative medicine to my delight.

I was on the felbetol expirment. I have tried everything. My thyroid is damaged from over dosing of meds. I am fed up, but I enjoy the good days to the max.

Nice meeting you , wishing you a sz free life ,hope to chat again.

Positive Person

stan49
New Member


Date Joined Feb 2006
Total Posts : 4
   Posted 2/27/2006 4:14 PM (GMT -7)   
Hi and thanks for the positive  input.I am allergic to mysolene.they tried it before the dilantin and one dose put me in a coma for 4 days.It scared me so bad that I wear a medic alert to make sure that I never get that again.Ive been very lucky,my oldest child is 26 and she has never seen me have a seizure.the meds really control mine as long as i dont get stupid and forget to take them...I did have some problems with the dilantin at first . Mostly made me tired and depressed also gave me acid reflux.I found that a smaller daily dose than reccomended by my doc worked just as well but didnt give me that drugged out feeling.we argued about it my doc and I but the bottom line was that I am the one who has to live it so we agreed to dissagree.he perscribes the amount that protocol says he should and I take what I know works for me.
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