Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Self weaning off of keppra 500mg

Tue, 03/07/2017 - 10:18
I am writing as a scared and concerned wife. My husband is on keppra 500mg, 2 pills twice daily. He is NOT epileptic. And has had several tests to confirm that however is was put on the medication bc he was having alchohol withdrawal seizures including two tonic clinic seizures. It's been a year and a half since then and he has been seizure free. But he has changed drastically. He is very depressed, he sleeps all the time when he is not working, he's so emotional and sad and crying often, he is angry - more than angry, he is cruel and verbally abusive, he blacks out and doesn't remember the monster that he was. Recently I was so scared for him I went behind his back and called his doctor to tell him of his behavior. He went in to see the doctor and also found out he had keppra toxicity, he blood level was 59. He told the doctor about his depression and anger and I feel the doctor took it too lightly. He dropped a pill for him at night time but didn't talk about long term goals. Unfortunately wasn't there and my husband wasn't assertive enough to tell him he wants to get off these meds. So as of now he is dropping one of his night time pills. My husband wants to self wean off keppra entirely. He u derstands it will me a long process and won't happen over night. I tried to compromise with him and tell him I'll find a new dr for him, I even found a holistic neurologist who will help him wean off but he wants to do it on his own bc he doesn't trust doctors anymore. He's been to 4 neurologist and honestly none of them are helpful meaning that they don't listen to his wants and needs. We fought this past weekend bc I'm just so scared something bad or tragic will happen to him if he self weans. We have a toddler and JUST found out we are expecting and it has been so stressful. I guess I'm asking anyone out there if you have successfully or unsuccessfully weaned off of keppra On Your Own, if there were adverse effects, how did it go. My husband as of now is not introducing any new medicine, his goal is to be keppra free. He is supposed to go back to his neurologist in three months but who know if he will go. If anyone has any advice, life experience, anything, I'd be truly grateful. I need to get my husband back. He says he feels like a hostage in his own body and would actually prefer seizures over being who he is now. He used to be so kind. He deserves to have better quality life than this. It's breaking my heart and breaking down our marriage. It's devastating.

Comments

My son will be 21 this month

Submitted by Jamie marie on Thu, 2017-03-09 - 18:32
My son will be 21 this month , his first seizure was at the age of 9 1/2 monghs , his last was at 4 and was taken off his meds at 5.. since then he has had a double hernia  surgery when he was 16 and bless his heart he started having seizures again . And even harder ones...the doctor put him on keppra. KEPPRA IS THE ABSOLUTE WORST MEDICINE ON THE MARKET IN MY OPINION BY FAR.. this med has so many side affects for my son like a constant ringing in the ears and many more  he said that he felt as if he was going crazy , It has made my son feel and be angry and violent , so my son chose to not tell anyone and wean himself off of keppra.. All i know is have your husband drop at a low amount and go very very slowly cause my son has had many many many hard traumatic siezures during this process.. . HAS ANYONE TAKEN KEPPRA EXPERIENCED SINUS PROBLEMS or have had an excessive amount of wax in the ears associated with ringing? 

Yes! I have been told I need

Submitted by ella003_5c496d4ae4969 on Thu, 2019-01-24 - 02:50
Yes! I have been told I need hearing aids bc of the ringing in my ears. I have to take citalopram to handle the side effects bit I actually think that I should be on citalopram instead of Keppra. 

I posted just a couple months

Submitted by Jamie marie on Fri, 2020-03-06 - 02:36
I posted just a couple months before my Son took his own life... He had side effects that made him very unstable.. I wish that I could've made the doctors pay attention to us

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.