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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

Sorry for the typos everyone.

Submitted by Baby doowop on Tue, 2017-03-07 - 10:22
Sorry for the typos everyone. 

He is NOT epileptic ___ Tests

Submitted by just_joe on Tue, 2017-03-07 - 11:17
He is NOT epileptic ___ Tests done all coming back normal does not mean he isn't an epileptic. Which tests? If they were regular EEG's then they may not show the electrical activity the neurologists are looking for. I know I had 20-25 different EEG's all came back normal. Yet I still had seizures.alcohol withdrawal  symptoms cane be many different things and the list is long. Severe symptoms may include seizures. However did you discuss them with the neurologist? Yes a person can have a one time seizure because of drinking or withdrawal from alcohol. The ER doctors know that and list them as a one time seizure. Weaning off keppra or any seizure medication does need to be done with a neurologist knowing it is being done. 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. Understand that all it takes to diagnose epilepsy is 2 seizures. You posted he blacks out. Those could be seizures of another kind.Now I am not trying to protect the doctors or the medications. I am just saying the doctor could have said he will lower the dosage gradually in order to get the toxicity straightened out. Once that is done he may change the medication completely. The neurologist wants him back in 3 months. There is a reason for that. The therapeutic levels build in the body. It takes time for the therapeutic levels to adjust to the new dosage. For me it took 4-6 weeks to get the levels down for the med we were stopping. It then took about a month to see if the adjustment stopped the seizures or my seizures increased. Meaning time to get off the dosage. time for the medication to leave my body and then time to see if the adjustment resolved the issue. After that other adjustments could be made. Adjustments such as weaning him off more medication.I hope this helps.As for your typos don't worry about them. I have them tooJoe

@joe, thank you. He had a few

Submitted by Baby doowop on Tue, 2017-03-07 - 12:07
@joe, thank you. He had a few ambilatory EEGs, Two MRIs, two Video and Sleep EEGs, he was in he hospital for five days under monitoring. I'm not sure of all the names, but the doctors all confirms the seizures were due to alchohol withdrawal. He had simple seizure as well as the tonic seizure. I'm one I agree with you, it needs to be done under the doctors supervision. It's my husband who doesn't feel that way, which is scary. I can't force him to go to the doctor after a certain point, he would just want to or know he has to do it, and that doesn't seem to be happening. Your reply does help, and like I said, I do agree with you as far as weaning off I'm a safe Manner and environment under dr supervision. My question is for anyone also if you have weaned off on their own, how did it go? I'm not promoting or encouraging that by any means but sometimes you just have to think of all the options bc you just can't control what someone else will do under these circumstances. I'm glad you meds have been straightened out and I wish the same for my husband. 

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