Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
PNES and Migraines
Wed, 07/24/2019 - 17:33Topic: Share Your Story
About 3 months ago i noticed i was getting migraines and around the same time my wife noticed my first siezure in my sleep. This could have been going on for longer but since i do not remember my siezures i do not know. I went to a neurologist at kaiser and he did an EEG of my brain, waited a week, told me I have epilepsy and prescribed me topamax. The topamax has made everything drastically worst. I get even more siezures, different kinds, and every kind of detremental side effect topamax gives people. It almost made me blind, my eyes rolled in the back of my hesd for an hour, i csn go on about this stuff. I went to the er because kf all this and the er doctor said my EEG was normal and im not epileptic. Im assuming I have PNES.
Hi Ganja, Thanks so much for
Submitted by Anonymous on Thu, 2019-07-25 - 08:55
Hi Ganja, Thanks so much for sharing your story, it sounds like you've been through a lot. We cannot determine if you have epilepsy or PNES, so it’s very important that you continue to follow-up with your healthcare team to determine what treatment is best for you and any potential changes in seizure types, frequency, side effects, behaviors, or symptoms.. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . For information regarding finding a specialist and second opinion please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.epilepsy.com/affiliates https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors'visits, and how to take control of seizures.Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy For additional information about PNES, medication side effects, diagnosing epilepsy please visit these links:https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-events https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/medications/topiramatehttps://www.epilepsy.com/learn/diagnosing-epilepsy It may be helpful having a device: https://www.dannydid.org/ , that can help track seizures: https://www.epilepsy.com/learn/managing-your-epilepsy/tracking-my-seizures/importance-tracking-seizures And by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf For additional questions, please 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: epilepsy.com/localsupport,