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.
Relapse worries
Fri, 07/12/2019 - 06:52Topic: Share Your Story
Hi,
Looking for some advice to see if anyone else has had a similar problem to me. I was diagnosed with Epilepsy in 2007 and after many years of trial and error, my seizures were brought under control with medication. After a couple of years seizure free, I slowly stopped my medication (with the guidance of my neurologist), learnt to drive and have been seizure and symptom free for around 5 years.
Last year I got a new job which I absolutely love, but at busy times it can be quite physically and mentally demanding. A few months ago after a particularly intense few days, I felt how I used to feel before I had a seizure. I went back to my GP who has referred me back to my Neurologist to see whether I should go back on medication. I'm waiting for an appointment. Earlier this week, I was twitching all day, again symptoms I used to get when the seizures weren't very well controlled. I currently haven't had a seizure.
Has anyone else been seizure free for years then relapsed? How did you deal with that? I don't know whether what I'm feeling are symptoms of seizures or whether I'm just a bit run down and over thinking things. I'm trying not to get too stressed about it because stress is a trigger for me, but I feel very worried at the minute and like I don't have any control over the situation. I'm also really worrying about losing my driving licence - I know it's not the end of the world but I rely heavily on my car to get me around and I would struggle to get to my job without a car.
I feel very alone at the minute and if anyone could give me any advice or share their experiences I would really appreciate it, as I feel like others aren't understanding what I'm worrying about and I don't know whether I'm just over reacting being so worried about it all and what these two symptoms could mean.
Hi Phelpsyjnr, Thanks so much
Submitted by Anonymous on Tue, 2019-07-16 - 12:54
Hi Phelpsyjnr, 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. To help prepare for your upcoming appointment visit: https://www.epilepsy.com/learn/diagnosis/medical-historyhttps://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfFor information regarding finding a specialist, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialisthttps://www.epilepsy.com/affiliatesYou may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline Seizures can take on many different forms and affect different people in different ways. Learn more about seizures here: https://www.epilepsy.com/learn/about-epilepsy-basics/will-i-always-have-seizuresIt’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:https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsIt is also important to recognize that epilepsy is more than just seizures, overall wellbeing and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health It is common for those living with epilepsy to experience feelings of anxiety: https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-advanced/anxiety-disordersThe Wellness Institute: epilepsy.com/wellness ,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: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools Additionally, there are plenty of things you can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy & stay safe: https://www.epilepsy.com/learn/seizure-first-aid-and-safetyCreate a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-formsTracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences, using a diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryHave a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf