One seizure / Going off LamotrigineXR

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My son had one seizure when he was 18, out of the blue, with no known cause. The neurologist suggested he start on Keppra, and he became very depressed, almost suicidal. This happened his first semester away at college, it was awful. He was also doing very poorly in classes that he had previously been looking forward to, and had a ton of anxiety issues. His neurologist switched him to Lamotrigine XR because it supposedly also helps with mood. For a while he seemed better, but after a short time the depression/anxiety reappeared, he has lost 20 lbs, he is very forgetful for his age, he can be angry / irritable, and is still in college but not doing well I don't know if these issues are caused by the Lamotrigine, or if he has epilepsy, or a separate mental health issue. He has not had another seizure and the doctor said he can try to come off the lamotrigine now that he has been seizure free for 4 years. He seems reluctant to do so, but I think we should try to go med-free to see how he does. These are my questions/concerns - The doctor lowered his Lamotrigine dose by 50mg due to his weight loss. Could there be side effects - low mood, anger, etc - as he moves down in dose by 50mg? The doctor said it should not be a problem, but I am skeptical, although I do want him to try to step down in dose If he decides to go off Lamotrigine completely, the doctor will step down 50mg at a time, over a few weeks time. Has anyone tried this? Is it reasonable or should we go slower? After he is off meds we will retest with another EEG. If he has to go on meds again, what med would we try next knowing he has mood issues on Keppra and Lamotrigine? I'm at a loss for how to help him and appreciate any ideas, thank you

Comments

Hi ChicagoMom, Thank you for

Submitted by Anonymous on Thu, 2019-05-16 - 08:46

Hi ChicagoMom, Thank you for sharing your experience. It is common for those living with epilepsy to experience feelings of depression and anxiety depression, https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health/overview-depression & https://www.epilepsy.com/learn/challenges-epilepsyIt is important to recognize that epilepsy is more than just seizures, overall well-being & emotional health is just as important, https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-healthAs a caretaker, it’s important to make sure you’re taking care of yourself as well. The Wellness Institute, https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute , provides tools and strategies to better assist your loved one and support you in your important role. https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress Sometimes it's helpful to connect with other people who live with epilepsy or care for someone with epilepsy, to ask questions, share experiences, and find and give support to each other. Find your local Epilepsy Foundation at, epilepsy.com/localsupport , www.epilepsy.com/affiliates , to find support groups, events, and programs in your community. You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. Please continue to express concerns with your son’s health care provider to further discuss any potential changes in side effects, behaviors, symptoms, or seizure types. For information regarding seizure medications please visit, https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/finding-best-dosage & https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/common-concerns and for information regarding side effects https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects & https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medicationUsing a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , may be helpful in tracking seizures, other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with his health care team. Additionally you & your son may want to consider with his doctor having a device that can help track his seizures, by visiting https://www.dannydid.org/ , as another self-management tool that you all can share with his doctors.

Hi ChicagoMom,  Thank you for sharing your experience. It is common for those living with epilepsy to experience feelings of depression and anxiety depression, https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health/overview-depression & https://www.epilepsy.com/learn/challenges-epilepsyIt is important to recognize that epilepsy is more than just seizures, overall well-being & emotional health is just as important, https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-healthAs a caretaker, it’s important to make sure you’re taking care of yourself as well. The Wellness Institute, https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute , provides tools and strategies to better assist your loved one and support you in your important role. https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress Sometimes it's helpful to connect with other people who live with epilepsy or care for someone with epilepsy, to ask questions, share experiences, and find and give support to each other. Find your local Epilepsy Foundation at, epilepsy.com/localsupport , www.epilepsy.com/affiliates ,  to find support groups, events, and programs in your community. You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org  , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support.  Please continue to express concerns with your son’s health care provider to further discuss any potential changes in side effects, behaviors, symptoms, or seizure types. For information regarding seizure medications please visit, https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/finding-best-dosage   & https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/common-concerns and for information regarding side effects https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects &   https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medicationUsing a seizure diary,  https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , may be helpful in tracking seizures, other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with his health care team. Additionally you & your son may want to consider with his doctor having a device that can help track his seizures, by visiting https://www.dannydid.org/ ,  as another self-management tool that you all can share with his doctors.  

Hi ChicagoMom, Thank you for sharing your experience. It is common for those living with epilepsy to experience feelings of depression and anxiety depression, https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health/overview-depression & https://www.epilepsy.com/learn/challenges-epilepsyIt is important to recognize that epilepsy is more than just seizures, overall well-being & emotional health is just as important, https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-healthAs a caretaker, it’s important to make sure you’re taking care of yourself as well. The Wellness Institute, https://www.epilepsy.com/living-epilepsy/our-programs/wellness-institute , provides tools and strategies to better assist your loved one and support you in your important role. https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress Sometimes it's helpful to connect with other people who live with epilepsy or care for someone with epilepsy, to ask questions, share experiences, and find and give support to each other. Find your local Epilepsy Foundation at, epilepsy.com/localsupport , www.epilepsy.com/affiliates , to find support groups, events, and programs in your community. You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. Please continue to express concerns with your son’s health care provider to further discuss any potential changes in side effects, behaviors, symptoms, or seizure types. For information regarding seizure medications please visit, https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/finding-best-dosage & https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/common-concerns and for information regarding side effects https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects & https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medicationUsing a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , may be helpful in tracking seizures, other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with his health care team. Additionally you & your son may want to consider with his doctor having a device that can help track his seizures, by visiting https://www.dannydid.org/ , as another self-management tool that you all can share with his doctors.

ChicagoMom,Over the years the

Submitted by Lurch69 on Thu, 2019-05-16 - 19:01

ChicagoMom,Over the years the neurologist had had me try numerous medications for partial complex seizures. Decisions to take me off of them have been suggested for a variety of reasons. From diminished impact, better alternatives, negative side effects, etc. With every change, though, the decreases usually spanned over weeks with small increments with each adjustment. During the decreases in medication, the expectation of possible seizures didn’t materialize aside from the normal 3-4 week cycle that they typically followed. The gradual decreases minimized (or prevented) the chances of it actually triggering seizures.Ultimately, open communication with your son’s doctor is critical. Keeping the physician informed will help him with decisions that he needs to make.Take care.

Lamotrigine made me really

Submitted by Athena_5ce4563aba984 on Thu, 2019-06-13 - 14:48

Lamotrigine made me really sick once the dose got to a certain level, and so I've been told to come off it. This is at the rate of 25mg per week (faster than I was supposedly going on to it ...).The type of medication prescribed will depend on the type of seizure(s) experienced. You would need to get advice from a specialist or at least a doctor about this.