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New to epilepsy

Mon, 10/14/2019 - 19:47
I just saw my neurologist for the first time. He told me that I was unconscious when the EMTs came and when I came to I was fighting them because I thought someone was after me. I told him I had pain like headaches all the time and dizziness, I asked if that was normal for this condition he said no. I don't believe that is correct. Am I wrong? he said it looks like I have a form of epilepsy. I currently take 100mg vimpat twice a day and that seems to be keeping me on my feet. but I still hurt.

Comments

While everyone’s experience

Submitted by Patriotrehab on Mon, 2019-10-14 - 21:12
While everyone’s experience with epilepsy is different, your neurologist is correct that it is not typical to have “pain like headaches all the time and dizziness” as part of epilepsy. For most people the seizure is over within a couple of minutes and then they are fine. Some people do experience what is called a postictal state where they may have a headache or feel dizzy or tired afterwards and that can last even up to a couple of hours, but that is rare and varies person to person. What you experienced with the EMTs for example could even be an example of your postictal state because you didn’t remember that you had a seizure, lost time (amnesia) and didn’t know where you were and who these people were that were trying to help you. Other people have comorbid conditions like migraines. I happen to be one of them and I take an anti epileptic drug also known as an AED called Topamax 200 mg bid and that helps me with both my migraines and seizures. Some neurologists are even willing to prescribe a lower dose just for treating migraines. Someone from the Epilepsy Foundation will probably reply to you this week with some resources. I wish you the best and hope that your seizures respond to medication right away!

Hi Billc, Thanks for posting,

Submitted by Anonymous on Tue, 2019-10-15 - 09:37
Hi Billc, Thanks for posting, we understand this must have been very scary and confusing to experience. Treatment varies for each individual, so it’s important that you continue to follow-up with your healthcare team to determine what individual treatment plan is best for you, as well as, any changes in moods, behaviors, sides effects & symptoms. 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 Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures For additional information about Vimpat & seizure medication, please visit: https://www.epilepsy.com/medications/lacosamideYou may want to consider keeping a seizure diary, or journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, setting reminders,recording your medical history,medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. You can also create a Seizure Response Plan or Action Plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms  which is a helpful tool for those who are close to you to understand what do if you have seizure. Review our seizure alert device factsheet 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.pdfOne of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns .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  

Oh the seizures seems to have

Submitted by Billc on Tue, 2019-10-15 - 16:38
Oh the seizures seems to have not occurred so far anyway. I was walking down the street these two times. I do remember getting up one day and for several days my tongue hurt it was swollen too. And there was a wound with some white there. I should read what the EMTs wrote about my episodes. A neighbor told me they stayed for an hour.

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