Temporal Lobe Epilepsy & Hallucinations

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Hi all, I have refractory temporal lobe epilepsy (left temporal lobe) with focal seizures. I have been on a number of meds, I'm currently on Topiramate but my seizures are drug-resistant. During my seizures I sometimes experience what my neurologist calls "scenic hallucinations" - I see people standing in the room with a horrible, vulnerabe feeling that they're coming to get me. These only happen at night and are under control right now (thankfully). I've been feeling really stressed out and anxious because of my job (I'm working on my dissertation) and the COVID-19 situation, having to self-isolate at home, the toll constant seizures bring etc., and I think I've been experiencing auditory hallucinations but without seizures. I really don't know what to do. ;( This is scaring me. Does anyone have any similar experiences? I feel so alone with this... Best wishes, Lea

Comments

Hi Lea,I’m a licensed

Submitted by Patriotrehab on Thu, 2020-03-26 - 23:57

Hi Lea,I’m a licensed clinical social worker as well as a person with epilepsy. One of my focal seizures is auditory. I also have refractory epilepsy. Mine originate bilaterally from my temporal and parietal lobes. It’s difficult to determine, however if what you are experiencing is more likely related to seizures or stress that could be affecting your mental health because you didn’t describe what you experience with the auditory hallucinations. It could very well be a focal seizure without impaired awareness originating from the left temporal lobe because you have a history of seizures from that as some people do experience that type of seizure, but it could be something else too. Nobody can tell you that what you are experiencing is a seizure or something else. However, I certainly wouldn’t rule it out given your history. I remember when I first started having my auditory seizures, I thought the medication was making me have hallucinations, but actually I was having seizures and didn’t know it because I was aware and nobody else knew that I was having them. Please tell your doctor about what it is that you are experiencing. Sleep deprivation and over exertion because you are working on your dissertation may be causing a change in symptoms. I wish you the best.

Hi, Thank you for posting, it

Submitted by Anonymous on Fri, 2020-03-27 - 08:52

Hi, Thank you for posting, it sounds like you’re going through lot. It’s important to remember that you are not alone, and we are here to help support you. We understand 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 . Seizure scan take on many different forms and affect different people in different ways. As Gianna stated we cannot determine if your auditory hallucinations you describe experiencing are seizures or related to another issue. It’s important that you’re following up with your healthcare team to review these new symptoms further and if you continue to experience any changes in seizure types/frequency, side effects, moods or behaviors to determine what individual treatment plan is best for you. Many clinics and offices are now offering telehealth options for non-emergencies, or routine check-in appointments. Ask your doctor’s if you can schedule a time to talk via phone/ other telehealth resources you can utilize,or if they can make any additional recommendations for you. It’s also important that you’re able to identify and recognize your triggers. Stress is one of the most frequently reported triggers for people living with epilepsy. While managing stress is very personal and specific to each individual situation,there are some coping strategies that have been proven to be effective for most people, here: https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress . If stress is a trigger for you, can document this by using a journal or a diary. This can help you and your healthcare team detect potential patterns, allowing you to modify your behavior and lifestyle, as appropriate. In addition to identifying your triggers,documenting these new episodes you’ve experienced and how your feeling in detail, (like you done in your post) will be very helpful to review with your doctors. My Seizure Diary can be used to organize your 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, it sounds like you’re going through lot. It’s important to remember that you are not alone, and we are here to help support you. We understand 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 . Seizure scan take on many different forms and affect different people in different ways. As Gianna stated we cannot determine if your auditory hallucinations you describe experiencing are seizures or related to another issue. It’s important that you’re following up with your healthcare team to review these new symptoms further and if you continue to experience any changes in seizure types/frequency, side effects, moods or behaviors to determine what individual treatment plan is best for you. Many clinics and offices are now offering telehealth options for non-emergencies, or routine check-in appointments. Ask your doctor’s if you can schedule a time to talk via phone/ other telehealth resources you can utilize,or if they can make any additional recommendations for you. It’s also important that you’re able to identify and recognize your triggers.  Stress is one of the most frequently reported triggers for people living with epilepsy. While managing stress is very personal and specific to each individual situation,there are some coping strategies that have been proven to be effective for most people, here: https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress . If stress is a trigger for you, can document this by using a journal or a diary. This can help you and your healthcare team detect potential patterns, allowing you to modify your behavior and lifestyle, as appropriate. In addition to identifying your triggers,documenting these new episodes you’ve experienced and how your feeling in detail, (like you done in your post) will be very helpful to review with your doctors. My Seizure Diary can be used to organize your 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, it sounds like you’re going through lot. It’s important to remember that you are not alone, and we are here to help support you. We understand 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 . Seizure scan take on many different forms and affect different people in different ways. As Gianna stated we cannot determine if your auditory hallucinations you describe experiencing are seizures or related to another issue. It’s important that you’re following up with your healthcare team to review these new symptoms further and if you continue to experience any changes in seizure types/frequency, side effects, moods or behaviors to determine what individual treatment plan is best for you. Many clinics and offices are now offering telehealth options for non-emergencies, or routine check-in appointments. Ask your doctor’s if you can schedule a time to talk via phone/ other telehealth resources you can utilize,or if they can make any additional recommendations for you. It’s also important that you’re able to identify and recognize your triggers. Stress is one of the most frequently reported triggers for people living with epilepsy. While managing stress is very personal and specific to each individual situation,there are some coping strategies that have been proven to be effective for most people, here: https://www.epilepsy.com/living-epilepsy/healthy-living/stress-and-wellness/managing-stress . If stress is a trigger for you, can document this by using a journal or a diary. This can help you and your healthcare team detect potential patterns, allowing you to modify your behavior and lifestyle, as appropriate. In addition to identifying your triggers,documenting these new episodes you’ve experienced and how your feeling in detail, (like you done in your post) will be very helpful to review with your doctors. My Seizure Diary can be used to organize your 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 don't experience exactly

Submitted by booksrMFav20 on Sun, 2020-03-29 - 18:01

I don't experience exactly that but I have a seizure not often were I see the room as dizzy and if I read while its happening I seem to be unable to see the letters right like I'm dyslexic .