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Keppra STOLE my Husband- the drug from HELL and a VERY irresponsible neurologist

Fri, 04/17/2020 - 18:43
Where do I begin? I met my husband in 2006. He had experienced his first seizure 2 years before and had been prescribed Dilantin. We dated for three years and then got married- we were both 29. He was always so jovial, was up for anything- loved being around people, going out etc. He had his second seizure in 2008 a few hours after we landed in Boston after taking a red eye from San Francisco. Unbeknownst to me, he had taken himself off the Dilantin....As a result he was again prescribed Dilantin after an afternoon spent in the ER. Fast forward several years- his Neurologist retired and he makes an appt. with a new one. This new Neurologist tells him that he's been on Dilantin too long and it might end up screwing with his gums. He prescribes him KEPPRA. Tells my husband "let your wife know that you may become a bit irritable at first but that should level out". He certainly became more irritable. It wasn't unbearable- just noticeable. As the months continued so did his irritability and now, agitation. I didn't say anything to him. I was afraid that he would stop the meds cold turkey and end up having a seizure while driving our 2 children to school.... It's now been at least 3.5 years of Keppra. The last at least 3 years have been HELL. I no longer know this person I'm married to. He's mean. He's SO critical of me and our children. His mood swings are out of control and the kids are scared. He is extremely combative- argues over EVERYTHING- mostly little silly things!! He is clearly VERY depressed and full of anxiety- he never wants to do anything (except ski). No longer golfs, doesn't want to go out to dinner, etc. Everyone annoys him and he says that "we don't think the same way". We will pull out of my parent's drive way after a day at the pool with my parents, siblings, and nieces and he will literally criticize each and every family member the entire drive home (while also criticizing my driving- too fast, too slow, wrong lane, not stopping at stop sign long enough, not pulling up to the stop sign enough- or too far, wrong/ preferred route home etc.) He once completely flipped out at me for buying two kinds of milk at the same time.....(almond and oat). Our sex life has deteriorated. It was subtle at first. He stopped initiating. Then he couldn't maintain an erection. Then he started asking for a threesome......told me I was "too vanilla" and that I needed to see a sex therapist. He has lost SO much of his hair. There were days that I would find SO much hair on his pillow case..... His energy is low- all the time. He literally has no emotion and no empathy. He says we have no chemistry and that he no longer feels anything for me. He says holding my hand is like holding his sisters hand. I've just learned that he hasn't seen his neurologist in over 3 years. This neurologist has continued to refill his prescription. I have called this Doctor's office 3 times. 3 TIMES!!!!! They refuse to help me because I'm not power of attorney…. So now I'm in therapy, my two kids are in therapy (ages 9 and 11). And as soon as this COVID-19 shelter in place is lifted, my husband is moving out and we are divorcing. WHAT THE HELL HAPPENED?!! Where did the person I married go?!

Comments

Hi. I’m a licensed clinical

Submitted by Patriotrehab on Fri, 2020-04-17 - 20:42
Hi. I’m a licensed clinical social worker as well as a person with epilepsy. It sounds like the neurologist has definitely done more than be irresponsible if he hasn’t seen your husband in three years. He has failed to monitor his seizures and effects of the medication on him since starting it. It’s true that patients have a responsibility to report things, but when it goes on that long...the medical board looks to the prescribing physician. Someone from the Epilepsy Foundation will probably be responding to you next week with some information and resources, but if your husband is willing to listen to you...perhaps you can share with him that for many people the side effect of mood changes with Keppra doesn’t go away until after the person goes off of it in a safe way and is given another medication to control the seizures. If he’s willing to listen to you, perhaps you may be able to talk about getting a different neurologist (some are offering telehealth) to give a second opinion and prescribe something else since this other doctor seems to be so negligent in his treatment approach. It’s standard practice for a neurologist to see a patient at a minimum once per year if the patient is having no seizures and no side effects from medication in order to continue treatment. If he agrees to the medication adjustment, family therapy may be needed to repair the damage that has been done over the course of the last several years and until his medication can be adjusted so that his mood isn’t affected. He needs to know that it’s not all his fault because the medication was a factor, but he will need to take responsibility in therapy for not doing something sooner and for hurting you and the children. I hope he will listen and see that there is hope and healing if he is willing to get a new doctor and try a different medication and therapy with the family. 

Gianna, thank you!  I

Submitted by Chapali on Sat, 2020-04-18 - 01:06
Gianna, thank you!  I sincerely appreciate your response.  I have tried to talk to him about the medication for the last 3 months and he just rolls his eyes and tells me I'm ridiculous.  We went to two marriage therapy sessions together and I tried telling the therapist about the Keppra side effects but she didn't listen either.  I've since talked to my current therapist, and my children's therapist about it but it seems to fall on deaf ears....I called the medical board and filed a claim but couldn't proceed because they want my husband's medical records and I don't have access to them.  AND I'm trying to figure out why Keppra would be prescribed to a person who doesn't have epilepsy.....My poor children, my daughter keeps telling me that she just wants her old dad back....and my son is a mess.  

Hi,Thank you for posting, it

Submitted by Anonymous on Mon, 2020-04-20 - 09:29
Hi,Thank you for posting, it sounds like you all are going through a lot. It’s common for those who are in caregiver role to feel overwhelmed.  It’s important to remember that you are not alone, we are here to help support you and that you’re and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf. The Epilepsy Foundation has many resources available that can help you find and build upon your support network. Contact your local Epilepsy Foundation, here: https://www.epilepsy.com/affiliates , or contact our 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where trained information specialists are available to answer your questions, offer help, hope, support,guidance, and access to national and local resources, epilepsy.com/helpline . Your husband’s difficulties regulating moods and behaviors that you describe him experiencing may be related to a number of things including his seizures, the cause of his epilepsy, side effects of medications, or a separate problem. To learn more about the challenges related to moods and behavior for people with epilepsy, visit : https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior . It is important that you all are continuing to follow-up with his healthcare team, (that you are comfortable with) to address these challenges, as well as if he experiences in changes in seizure types/frequency, symptoms, moods & behaviors. Be open and honest with his doctors about the impact of his behavioral problems and how they affect you, your family and daily life.Many clinics and offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. As Gianna mentioned in her comment, if your husband is willing, he may want to consider getting a second opinion or seeking more specialized care for his epilepsy at an epilepsy center. A comprehensive epilepsy center is a group of healthcare professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, (epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan may be best for him. Epilepsy centers can also help connect you with additional support groups, educational sessions and connecting you with other families. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center . There are many different types of counseling that can be very helpful, we are glad to hear that you all are in therapy to receive additional support. In addition, you may want to ask his doctors to refer you to other members of the healthcare team, such as neuropsychologists,psychiatrists, or social workers, who specialize in helping people with epilepsy and their families to improve their lives. https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior

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