trying to wean myself off Dilantin safely without having the status epilepticus from withdrawal because I never have had seizures before but had where I would go blank but still beable to function but not speak for a short time like 5-10secs doctors here did a EEG and find nothing out of the ordinary but prescribe Dilantin anyways which I have been taking 200mg daily for about 10yrs I hope it has not done any damage to where I can't make my own decision and wean myself off of it I am now at 50mg but had one seizure where I stiffened at night please help instruct me on how I may wean myself off safely.
I had a malignant meningioma (the size of a softball) on my left frontal lobe 6 years ago causing grand mal seizures in my sleep and episodes where I could not talk very well during the day. This was not good because I was in custom development software sales and was meeting with clients on a daily basis. They excised the cancerous tumor and put me on Dilatin and followed it up with 7 weeks worth of radiation.
My Neuro-oncologist two weeks ago suggested that I be weaned off Dilatin. I have been seizure free for two years. They sent me for a bone density exam and I show signs of osteopenia in my hips. Mind you I walk for my job everyday and spend about 2/3 of my waking hours on my feet so it's not like I'm NOT doing weight bearing exercising.
I was taking 425mg per day right after my surgery (today is my 6th anniversary for having a second chance at life from brain cancer). They gradually got my blood levels at a constant therapeutic level with 350mg. For the last two weeks have been taking 325mg. The doctors plan is to have me weaned off over an 8 month period. I have never heard of anyone being successful going off of it quicker than 6 months. The following is my Neuro-oncologists regimen:
Currently on 350 mg. If she agrees, please recommend the following schedule:
325 mg qd x 2 mo (125+200)
300 mg qd x 2 mo (100+200)
200 mg qd x 2 mo (100+100)
100 mg qd x 2 mo (0+100)
There is a small risk of sz with this approach. If I have any symptoms suggestive of seizure I should call my Dr. right away.
You probably didn't want to know all of this, but I felt compelled to respond when I read the part about you stiffened at night. I had a grand mal seizure one night that I know I fell off my bed around 10:30 PM and did not pick myself up off the floor until 1:38 AM. The only other person in the house was my two year old son with me; it's anyone's guess on long I was seizing.
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