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New to Dilantin and concerned
Tue, 08/01/2006 - 16:14Topic: Medication Issues
Hi All, I have been on 2500mg Keppra and recently I saw an Epileptologist. With my TLE not under control and bad side effects of Keppra he decided to change me to Dilantin and reduce/eliminate the Keppra once blood tests were up to theraputic levels. He himself has done research on Keppra and believes that Dilantin may be a good choice for me. I am very concerned because of what I have read about Dilantin. So far I am on 300mgs and little or no side effects except being tired a lot(seizures are reduced by 70% but still there. After blood test, my level was really low. On a positive note, the Dilantin immediately helped with the emotional side effects of Keppra.I would really appreciate any advice with anyone on Dilantin since all I have read about it, is quite unnerving? Thanks for any thoughts, Rita
Comments
Re: Re: New to Dilantin and concerned
Submitted by carolyn61 on Fri, 2007-05-11 - 01:58
Hi Rita, I have been on dilantin for 33 years now. I don't like what it has done to my gums over the years and had my gums cut back a few times. You may also experience unwanted hair growth. They have had to put me on depakote extended release along with the dilantin to help with my grand mal seizures and this seems to work fine for me. I always make sure I eat something with my meds to avoid any upset. If you miss any meals your hands will shake, and you may experience headaches...I do, but that may not be the case for you. Also, get plenty of rest as dilantin can make you very tired...I hate feeling tired all the time. Take good care of yourself and keep me posted
Carolyn
Re: New to Dilantin and concerned
Submitted by CB on Sun, 2006-08-13 - 20:13
CB
Hi Rita - I've been on Dilantin for 46 years and have had almost no problems. In the beginning my gums bled and became more swollen than I liked (I used to model) so at some point I had a gingevectomy (20 yrs ago). Since then no problems with the gums. However a recent discovery is fairly serious. A recent brain MRI showed mild cerebellar atrophy, which can occur with this drug after very long term use. But I show no symptoms and can walk normally and have no balance problems. I have been told I should have no problems walking for a very long time, if ever. I've been lucky. The Dilantin has controlled my seizures completely and until this recent discovery, I've had no side effects and have just lived life normally. I've occasionally been prone to over worry and anxiousness, but I tended to that anyway, and it never lasts long. I understand the concern switching to a new drug. One doctor here wants me to switch off the Dilantin because of the atrophy and have me take Keppra, but I've told him I won't do that. I've heard too many bad things about Keppra. Other things about the Dilantin - it lowers your white blood cell count (mine has always been extremely low but hasn't resulted in anything), and Dilantin increases the level of LDL (good) cholesterol, so those levels may increase. It can accelerate osteoporosis, and I'm at an age now where I will have to increase calcium and watch this, but for no other side effects, I'll accept that. I wish you the best with your switch! But be aware of the potential for atrophy very long term, and maybe every 10 years or so, you might ask your doctor if you should get an MRI to determine if it's effecting your brain in this way.
Best of luck to you.
"CB"
Re: Re: New to Dilantin and concerned
Submitted by lorrasm22 on Thu, 2007-03-15 - 17:25
hi I have been on Dilatin for over 19years my nuro said that when I get older I will have problems with my equalibrium all due to Dilatin My gums are horrible my weight well you should know and its solid were not fat and scary were solid. Do you like the facial hairs I sure don't but than again iam a girl. I am only 40. I have been doing fine on Dilatin for many years a seizure here and there and I was grateful but I was convulsing daily..After many years on Dilatin it messes up your bowel. After awhile you get to where you are going so much that the Dilatin that you take goes in and back out that fast go see your nuro and try a new med its worth it I just started Topamx 3rd week no seizures feeling real good. Dilatin has been out for over 77 years its a dino please try something new befor you mess up your kidneys I stopped just in time.. Lorraine