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Hello everyone I was wondering if anyone has experienced this before. I recently gained seizure control with lamotrigine (lamictal), but I still feel horrible. It's almost as bad as having seizures all the time. I get these intense episodes of dizziness, exhaustion, and nausea it feels like I'm going to throw up and pass out. After I get a headache. This happens every day several times a day. My neurologist is completely indifferent I told him this and he told me to just ignore it and get a job. How the hell am I supposed to do that? I don't know if this is a medication side effect or something else. Thanks in advance.

Comments

Dancing Queen,Your right, I

Submitted by birdman on Wed, 2019-09-11 - 20:55

Dancing Queen,Your right, I've found the drug side effects are often worse than the seizures although I've not experienced those side effects when I tried Lamictal. I've often found that doctors rely upon my careful tracking to make judgement about whether the drug is effective, ineffective, or destructive. It helps to keep a log not just of seizures but medications, tests, doctor visits, and the other medical ills you face. Doctors depend upon this accurate recording. But it also sounds like you have serious issues with your doctor. Is it possible for you to change to a different neurologist, possibly an epilepsy specialist? And given the problems you are experiencing, if your current neuro isn't going to pay attention you might want to see your primary care doctor. Maybe he/she can provide some backup for what you are experiencing.Mike

HiDancing Queen_5d2f880fa733e

Submitted by Anonymous on Thu, 2019-09-12 - 09:24

HiDancing Queen_5d2f880fa733e, Thanks so much for posting and we are sorry to hear you’ve had such a negative experience. Treatment varies for each individual, so it’s important that you consult with your healthcare team (that you’re comfortable with), prior to making any changes in your treatment to determine what is bestfor you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf The goal of treatment with medicines should be – “No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome. https://www.epilepsy.com/medications/lamotrigine https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects If you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions, or assistance finding a specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/affiliatesYou 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 supportOr contact your local Epilepsy Foundation: epilepsy.com/localsupport My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, but recording medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests.It’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools

HiDancing Queen_5d2f880fa733e,  Thanks so much for posting and we are sorry to hear you’ve had such a negative experience. Treatment varies for each individual, so it’s important that you consult with your healthcare team (that you’re comfortable with), prior to making any changes in your treatment to determine what is bestfor you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf  The goal of treatment with medicines should be – “No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome. https://www.epilepsy.com/medications/lamotrigine https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects  If you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions, or assistance finding a specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/affiliatesYou 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 supportOr contact your local Epilepsy Foundation: epilepsy.com/localsupport My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, but recording medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests.It’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools

HiDancing Queen_5d2f880fa733e, Thanks so much for posting and we are sorry to hear you’ve had such a negative experience. Treatment varies for each individual, so it’s important that you consult with your healthcare team (that you’re comfortable with), prior to making any changes in your treatment to determine what is bestfor you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf The goal of treatment with medicines should be – “No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome. https://www.epilepsy.com/medications/lamotrigine https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects If you can’t talk openly with your team, or you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions, or assistance finding a specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/affiliatesYou 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 supportOr contact your local Epilepsy Foundation: epilepsy.com/localsupport My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, but recording medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests.It’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools

Thank you Mike! I do keep

Submitted by Dancing Queen_5d2f880fa733e on Sun, 2019-09-15 - 14:11

Thank you Mike! I do keep careful records, but I've been on 2 other medications while increasing the lamotrigine dose and both didn't work at controlling the seizures and had bad side effects themselves. I just feel a little mutled at the moment. I have been referred to an epilepsy center so hopefully I can get the help I need there. Again thank you for your comment.