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Trigger is photosensitivity combined with sensory overload - does anyone else have this?

Wed, 09/18/2019 - 15:08

Topic: Diagnostic Dilemmas and Testing

Hello everyone. I was diagnosed with epilepsy last December after two grand mals and a few auras. All tests, however, drew a blank, so the cause is still a mystery. Keeping an epilepsy diary, I'm beginning to think that sunshine or fluorescent light is part of the trigger; the other part is sensory overload (busy street, lots of products on display, etc). All my seizures/auras till now have been in a supermarket or busy street. Does this sound familiar to anyone? Are there any experts in photosensitive epilepsy out there? Thanks in advance! Dan

Comments

Hi ds34450, Thanks so much

Submitted by Anonymous on Thu, 2019-09-19 - 10:11

Hi ds34450, Thanks so much for posting. We are so glad to hear that you’re keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryThis is a great tool to track your seizures, record your medical history, set reminders,record side effects, moods, or other personal experiences, to share with your healthcare team. Additionally, you may want to review our seizure alert device fact-sheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It’s important that you follow-up with your healthcare team to discuss your concerns and possible triggers related to photosensitivity and sensory overload, as well as, discuss any changes in seizure types, frequency, behaviors, side effects and symptoms. For assistance finding an epileptologist(epilepsy specialist), or for information regarding second getting a second opinion, please visit :https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions Reflex epilepsies are a group of epilepsy syndromes in which a certain trigger or stimulus brings on seizures. https://www.epilepsy.com/learn/types-epilepsy-syndromes/reflex-epilepsiesLearn more Reflex epilepsy and photosensitivity, here: https://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizureshttps://www.epilepsy.com/article/2014/3/photosensitivity-study Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.

Hi ds34450, Thanks so much for posting. We are so glad to hear that you’re keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryThis is a great tool to track your seizures, record your medical history, set reminders,record side effects, moods, or other personal experiences, to share with your healthcare team. Additionally, you may want to review our seizure alert device fact-sheet with your doctor, to see if a seizure alert device is an option for you:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It’s important that you follow-up with your healthcare team to discuss your concerns and possible triggers related to photosensitivity and sensory overload, as well as, discuss any changes in seizure types, frequency, behaviors, side effects and symptoms. For assistance finding an epileptologist(epilepsy specialist), or for information regarding second getting a second opinion, please visit :https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions Reflex epilepsies are a group of epilepsy syndromes in which a certain trigger or stimulus brings on seizures. https://www.epilepsy.com/learn/types-epilepsy-syndromes/reflex-epilepsiesLearn more Reflex epilepsy and photosensitivity, here: https://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizureshttps://www.epilepsy.com/article/2014/3/photosensitivity-study Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline  Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. 

Thank you so much for the

Submitted by ds34450 on Thu, 2019-09-19 - 14:04

Thank you so much for the detailed posting!

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