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.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.