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Davidc148

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Hi Guys, just this minute joined the forum!
I've had Epilepsy for 20 odd years now....came out of the blue one day. Been on Phenytoin ever since. For years it controlled everything.....we are talking 5 year gaps between siezures. The past year I've had 4!!.....My most recent blood test showed I was dehydrated......so I'm guessing thats whats causing them......I'm seriously bad at drinking water admittedly, thats changed now.....I got sunburned.....had a seizure! Noone ever told me that Phenytoin made your skin super sensitive to the sun!!!

:soap::woot::pop::brain:
 
Hi There! Welcome! It's funny, two days ago I had a complex partial at the beach...yup, forgot my medication said to stay out of the sun big time. With the sounds, the waves, the people, the sun, I guess it was bound to happen :(...looks like I'm going to the beach after 5pm or bring a tent and ear plugs :)?
 
I too had been on phenytoin for years and well controlled as long as I remembered to take it. After around 30 years out of the blue started having seizures again. After doing some research on my own and based on comments made by my GP. Realized that it could interfere with vitamin D which can affect your calcium. At a health food store they have a mineral dialysis that they can do using several strips of your hair. I did this and they came back told me I had an imbalance of magnesium compared to calcium. Mentioned some other issues with this. I can't help but wonder if the phenytoin caused the imbalance and if so could this have been cause of seizures. Of course neuro just changes my meds and as long as no seizures then they believe everything is okay. Doesn't matter quality of life because of side effects from meds.
 
Hello and welcome to CWE!
I've been on Tegretol for 39 years I was on Dilantin 36 years it didn't control me but there wasn't much choice when I was a kid had E 50 years.I'm allergic to some of the meds now though.
 
Welcome!

I'm a new member as well, and thankful to have found this site. I've been on Dilantin for 30+ years and my last seizure was 4 yrs ago also. I'm getting ready to try Keppra XR this week and if I tolerate it I will taper off Dilantin when I reach a therapeutic dose. I'm doing this because of the side effects I'm experiencing with long-term Dilantin use.
I just started seeing a new neurologist (my last moved away) and she is really great, so far. Quality of life is a big thing to me and I like to be proactive. Dilantin has served its purpose well for me but I'm hopeful that Keppra will be as good with less side effects. Of course, everyone reacts differently to meds, so what works for one may not work for another.
Best of luck and keep us posted on how you do! And welcome!!!
 
cawhitern said:
Welcome!

I'm a new member as well, and thankful to have found this site. I've been on Dilantin for 30+ years and my last seizure was 4 yrs ago also. I'm getting ready to try Keppra XR this week and if I tolerate it I will taper off Dilantin when I reach a therapeutic dose. I'm doing this because of the side effects I'm experiencing with long-term Dilantin use.
I just started seeing a new neurologist (my last moved away) and she is really great, so far. Quality of life is a big thing to me and I like to be proactive. Dilantin has served its purpose well for me but I'm hopeful that Keppra will be as good with less side effects. Of course, everyone reacts differently to meds, so what works for one may not work for another.
Best of luck and keep us posted on how you do! And welcome!!!
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Good luck with the switch. I must say took me at least 2 months to switch and adjust to some of the side effects of keppra. The first two weeks were awful!!! Spent a lot of time crying and sleeping. Had a therapist I did talk to and see for awhile. I've been on keppra a little over a year now. Things are not perfect. Still have some good days and bad. But things are better and no seizures since I have been on it.
 
Thanks daviscy60!

It always makes me feel better to hear how someone is doing on Keppra, good or bad. The neurologist is planning to ramp my dosage over a two month period and see how I do. If I tolerate it I will taper off Dilantin. I may take a few days off when I start it, just to be cautious. I have a therapist lined up if I need it. Will keep you posted! Thanks!
 
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