Musicogenic epilepsy

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Hello, i'm 22 years old girl and I'm coming from Slovenia. Last year I was diagnosed with musicogenic epilepsy. I have problems with music 10 years (I have seizure when I hear the music, singing or such sounds), but last 2 years is getting worse. My life is really difficult, at that moment I feel sad, disappointed, melancholy. The last year I was taking Lamictal, but I had a lot of problems with tiredness and other side effects, so I stopped taking it. Ten years ago I was taking Keppra, but also there was a lot of side effects, it did't help me. It is almost 1 year from the last visit my doctor. It seems that they have no interest about my case, I still dont have date to visit my doctor. At that moment I'm questioning what should I do. How, where could I found another help? I just want to know, if there's a possibility, treatment for my disease, this waiting's killing me. Thank you in advance!

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Wed, 2020-03-25 - 09:09

Hi, Thank you for posting and for sharing your story, it sounds like you’ve been through a lot. It's important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health. One of the most important things to help you live with epilepsy is to find a support network. 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. You may want to consider participating in treatment, seizure and lifestyle management programs (which can be accessed from home), that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life. https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network . Treatment and how the body may react to certain medications varies for each individual. 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 or cause other health problems. It is common for some people living with epilepsy to report experiencing feelings of depression. It’s important that you’re continuing to address these challenges with your healthcare team, who can work with you to help determine what individual treatment plan is best for you. Be open and honest about how you’re feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . If you feel you cannot talk openly with your doctors or that you all aren't working towards the same goals, it may be time to get a second opinion. If you have not already, you may want to consider getting more specialized care for your epilepsy at a comprehensive epilepsy center. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center .You may also want to consider keeping a journal or a diary to help track your seizures and document how you’re feeling. My Seizure Diary can be used to organize health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary

Hi, Thank you for posting and for sharing your story, it sounds like you’ve been through a lot. It's important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health. One of the most important things to help you live with epilepsy is to find a support network. 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. You may want to consider participating in treatment, seizure and lifestyle management programs (which can be accessed from home), that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life. https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network . Treatment and how the body may react to certain medications varies for each individual. 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 or cause other health problems. It is common for some people living with epilepsy to report experiencing feelings of depression. It’s important that you’re continuing to address these challenges with your healthcare team, who can work with you to help determine what individual treatment plan is best for you. Be open and honest about how you’re feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . If you feel you cannot talk openly with your doctors or that you all aren't working towards the same goals, it may be time to get a second opinion. If you have not already, you may want to consider getting more specialized care for your epilepsy at a comprehensive epilepsy center. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center .You may also want to consider keeping a journal or a diary to help track your seizures and document how you’re feeling. My Seizure Diary can be used to organize health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary

Hi, Thank you for posting and for sharing your story, it sounds like you’ve been through a lot. It's important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health. One of the most important things to help you live with epilepsy is to find a support network. 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. You may want to consider participating in treatment, seizure and lifestyle management programs (which can be accessed from home), that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life. https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-network . Treatment and how the body may react to certain medications varies for each individual. 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 or cause other health problems. It is common for some people living with epilepsy to report experiencing feelings of depression. It’s important that you’re continuing to address these challenges with your healthcare team, who can work with you to help determine what individual treatment plan is best for you. Be open and honest about how you’re feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . If you feel you cannot talk openly with your doctors or that you all aren't working towards the same goals, it may be time to get a second opinion. If you have not already, you may want to consider getting more specialized care for your epilepsy at a comprehensive epilepsy center. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center .You may also want to consider keeping a journal or a diary to help track your seizures and document how you’re feeling. My Seizure Diary can be used to organize health issues, manage medications, record side effects, other therapies or personal experiences and more which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary

I'm sorry that you must wait

Submitted by birdman on Wed, 2020-03-25 - 20:33

I'm sorry that you must wait so long to visit with your doctor. I don't understand if you live in Slovenia, or do you live in the US and come from Slovenia? From what little I read Slovenia is a very mountainous region but I don't know if that means remote. Are there bigger cities with medical specialists who treat epilepsy, also know as epileptologists? If the doctors you've seen don't seem to have much interest in your unique case a specialist would seem better suited. Also a specialist will be able to lead you into alternative treatment options. But wherever you go whatever doctor you see be prepared to wait. It's the nature of epilepsy that we have to wait for the symptoms and doctors cannot test them on the spot. But as you wait keep on learning about epilepsy and the treatments. This will help you be more informed and prepared to move on to better treatment. Like the person from ConnectHelp suggested it's wise to keep a journal on a spreadsheet or My Seizure Diary so that wherever you go you can be wise on the treatments you've tried and then you are better prepared to communicate with the doctor.

Please go to https:/

Submitted by irangel on Thu, 2020-03-26 - 02:40

Please go to https://atkinsforseizures.com/dietary-chemical-seizure-triggers/ and you must understand Epilepsy is idiopathic. Please take the time to look up the definition of: IdiopathicIrma