Sat, 07/06/2019 - 18:23
I started having seizures in 2017 and I’ve had only had three seizure on my second one I almost died and on my third one on New Year’s Day this year. Ever since I’ve been diagnosed with anxiety and I worry about seizures and I can’t stop thinking about them. I worry about if I go into a seizure and I won’t wake up again. Just wanted to share this story to try and get some help. Just want to know what everyone feels like before they have seizures like the symptoms before a seizure.


CamRead,I'm sorry to hear

Submitted by birdman on Sun, 2019-07-07 - 21:03
CamRead,I'm sorry to hear about your awful experiences seizures.  The uncertainties seizures bring are a scary aspect of epilepsy.I started having my seizures as a child.  I remember when I was 5 yrs old or so I felt panic, "Oh, Oh, mom; here I go again."  i had heavy breathing and was real scared of what was happening.  Sometime when I turned eight or nine yrs old I remember I didn't like the attention I got from mom, and I realized the panic was not doing me any good.  Maybe I could stop the seizures by just relaxing?  It took me many years but on my own I was able to hide the events a little better.  Being calm has not stopped the seizures, but it has given me a sense of control.As I understand it many of us not only experience anxiety because of the uncertainties of when they may happen and what could happen if...  But also if you have temporal lobe epilepsy the seizure focus can be in the emotional center of the brain.  The seizure is an excess of electrical activity and if it is happening in the emotional center this can shake the anxiety and fear even more.  If anxiety continues to be a problem talk to a doctor who can prescribe an anti-anxiety medication.  I take Klonopin (clonazepam) and it helps relieve the anxiety I am naturally prone to.   There was one period when I went through multiple seizures and some heavy medication changes that I came out of it and for several months had panic attacks and severe anxiety.  I found a clinic near me that not only offered the visits to a doctor who could prescribe the medications I needed but also offered a panic attack class where I was with a group who was given exercises on how to relax on my own without more pills.  See if you can find such a treatment center in your area.  It was very helpful.  Mike 

Hi CamRead, Thanks so much

Submitted by Anonymous on Mon, 2019-07-08 - 09:09
Hi CamRead, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s important that you express your concerns and an increase of feelings of anxiety, changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team. .    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.Please visit:            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: It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: You may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000,  , , where a trained information specialist can connect you to resources,  provide referrals and additional support.  It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:   It is common for those living with epilepsy to experience feelings of anxiety: Wellness Institute:   ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here: Additionally,  there are plenty of things you can do to reduce these feelings and manage your epilepsy:  & stay safe: a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: Tracking your seizures, record your medical history, medications, side effects,moods, or other personal experiences. using a diary: Have a seizure alert device: 

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