The Power of Epilepsy Support Groups
After being diagnosed with epilepsy, I had no idea who to turn to for help.
Navigating life with epilepsy brings its unique set of challenges, but you don’t have to face them alone.
There are many benefits to joining an epilepsy support group. A community that understands, empowers, and uplifts, offering a sense of direction on your journey.
Here are some of the key advantages:
Emotional Support:
Support groups can provide a safe space where you can express your feelings, concerns, and frustrations openly. Connecting with others who understand your experiences can ease feelings of loneliness and provide emotional validation.
Sense of Community:
Being a part of a support group allows you to connect with people who share similar challenges. Having a sense of inclusion can increase your self-esteem and realization that you’re not alone in your journey.
Information Sharing:
Support groups offer a space to exchange helpful information about epilepsy management, treatment options, and coping strategies. You can learn from others’ experiences and gain insights into what works best for them.
Reduce Stigma:
Talking to people who have firsthand experience with epilepsy can help you feel understood and accepted. It can help reduce stigma surrounding the condition.
Beneficial Tips:
Group members usually share beneficial advice for handling certain aspects of daily life, such as managing medications, dealing with triggers and other important tasks.
Inspiration and Hope:
Hearing others’ experiences and how they’ve overcome challenges can inspire hope and encouragement. It reminds you that epilepsy doesn’t define your life and that good things can still be accomplished.
Coping Skills:
Support groups offer a space for learning and practicing coping skills, stress management techniques, and ways to handle anxiety due to epilepsy.
Advocacy Opportunities:
Joining a support group can empower you to become an advocate for epilepsy awareness and education. Together, group members can work toward dispelling myths and raising public understanding.
Friendships:
Lasting friendships can be forged within a support group. Having friends who truly understand your challenges can establish a strong support system.
Access to Resources:
Group members will often share resources, websites, books, and other tools that can help you better understand and manage epilepsy.
Looking for a support group?
Find a local support group near you
Visit The Epilepsy Network (TEN) on Facebook
Join Epilepsy and Seizures Support Group on Facebook
Bottom line, joining an epilepsy support group can offer a worthwhile support system consisting of empathy, knowledge, and encouragement that can make life a whole lot easier and more enjoyable while living with epilepsy.
Tiffany Kairos
I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!
One Comment
Cory Morris
I am a 33 year old male who was diagnosed with drug resistant right temporal lobe epilepsy. Then recently I was diagnosed with a rare seizure genetic disorder called VPS13A. I have struggled with uncontrollable weight loss. I have been using a g tube for over 6 months and have been struggling to gain or maintain my weight. I have a progressive myopathy which has made me a poor candidate for epilepsy surgery.
I am not sure how to determine the total amount of time I have left. I was told that the feeding tube was supposed to be short term, for 6 months to a year. I am coming up to about a year and still experiencing up’s and downs in my weight. There has been no significant weight gain. The eating schedule I am currently on is vigorous and exhausting. It has become more like a chore. Eating orally is difficult and often times embarrassing. I don’t enjoy eating and finding time to enjoy eating is difficult.
My Medication regimen is often an issue the side effects have become unmanageable and I have not been on a steady dose for even a couple months for the past year. Originally it was thought that Topiramate was effecting my weight. I tried to reduce the amount taken very slowly but by the second reduction I was seizing out of control. At the increased level of oxcarbazpinie (900mg) i was not able to function properly. I felt dizziness and clumsiness. I have now tried several combinations of the midday dose. I need the BRIVIACT (25mg) boost but it is causing me to lose my day to nodding off of and napping. It was also noted by my speech therapist that the medication was effecting my speech at a noticeable level. It is hard to determine whether or not these are petit mal seizures (loss of consciousness) or just heavy side effects.
All of the things that have been taken from me. First off I lost my ability to work and I had a job since I was a teenager. I was always going to take your kid to work day. This has been my ultimate failure not being able to provide. Then I lost my license, actually it was revoked. I was in multiple accidents and then put a friends life in danger. Riding public transportation has also become a challenge because riders often don’t understand what is going on during a seizure. Trimet the bus service has asked for me to ride with a companion or nurses aid. Beyond my ability to work and travel. I have lost my sister to SUDEP and I feel like it was for nothing.
My health is definitely declining. OHSU treats me like a test subject and I’m often giving them a piece of me. I don’t like how I am being treated as if my disease is incurable now.
I can not say that I can add or even continue this vigorous medical treatment for another year without results
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