May 31, 2017

Epilepsy


Here’s a free collection of resources about epilepsy- Epilepsy blogs, videos, support groups, first-hand experiences and advice from people who have epilepsy, etc.

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Epilepsy Blogs

Here’s a list of epilepsy blogs- blogs written by people with epilepsy, or about epilepsy.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Living Well With Epilepsy livingwellwithepilepsy.com 2017
Epilepsy Society epilepsysociety.org.uk 2017
The Value of Openness blog.patientslikeme.com 2017
Upon a Sunshine uponasunshine.co.uk 2017
Becoming a Mum with Epilepsy becomingamumwithepilepsy.blogspot.co.uk 2017
The Epilepsy Cure epilepsycuring.com 2017
The Act of Living with Epilepsy jade-epilepsymynewlife.blogspot.co.uk 2016
Beating Epilepsy beatingepilepsy.blogspot.co.uk 2016
Chelsey’s Epilepsy Live myepilepsylife.blogspot.com 2015
Serene’s Epilepsy Legacy epilepsylegacy.blogspot.com 2015

Epilepsy Support Groups

Epilepsy Support Groups On Facebook

  1. Epilepsy/Seizure Support and Discussion (21455 members)
  2. Seizure Disorders/Epilepsy Awareness (14914 members)
  3. Epilepsy Facebook Group (12160 members)
  4. Epilepsy Awareness Group (9655 members)
  5. CBD 4 Children with Epilepsy (9254 members)
  6. Epilepsy: Brain-E-Warriors (8335 members)
  7. Epilepsy Awareness (8332 members)
  8. Epilepsy Friends (7501 members)
  9. Epilepsy Support Group (6848 members)
  10. Epilepsy Support Group (5871 members)
  11. Living with Epilepsy (3476 members)
  12. Parents of Children with Epilepsy (3375 members)
  13. Epilepsy Australia (3144 members)
  14. Epilepsy Group (3019 members)
  15. Autism and Epilepsy (2916 members)
  16. Epilepsy Parents Australia (2696 members)
  17. Epilepsy Seizure Support Group (2654 members)
  18. Diets for Epilepsy (2399 members)
  19. All About Life with Epilepsy (2342 members)
  20. Spreading Epilepsy Awareness (2315 members)
  21. All About Epilepsy (1952 members)
  22. Epilepsy Ireland (1677 members)
  23. Epilepsy – The Ketogenic Way (1576 members)
  24. Epilepsy of USA (1491 members)
  25. Liam’s Journey – Epilepsy (1451 members)
  26. Epilepsy ChitChat (1315 members)
  27. Benign Rolandic Epilepsy (1264 members)
  28. Epilepsy Support Group (1080 members)
  29. Women with Epilepsy (612 members)
  30. Epilepsy Group Scotland (502 members)

Other Epilepsy Support Groups And Forums

  1. Epilepsy Support Group (25,810 members, 6,691 posts)

 

Epilepsy Survey

We’re surveying people about their experiences with epilepsy. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with epilepsy**


Epilepsy Symptoms

What symptoms have you experienced?

  • Infantile spasms. (3 year old grandson)
  • Having seizures. (Emma, 17 years old)
  • Tonic Clonic Seizures. (AK, 21 years old)
  • Drowsiness, memory loss, biting tongue, extreme fatigue, headaches/migraines, muscle fatigue. (Erika J., 21 years old)
  • Nausea, dizziness, tiredness, fatigue. (Sean S., 24 years old)
  • Tonic clonic seizures, aura, migraines, todds paralysis of left side after seizures for up to 48 hours. (Alex, 27 years old)
  • Auras, headaches, tiredness, feeling zoned out. (Anonymous, 27 years old)
  • Absence, Seizures (Tonic-Clonic Generalized). (Sean B., 28 years old)
  • Severe headache before seizures. (Mary T., 30 years old)
  • Lip smacking, staring. (Alvic R., 33 years old)
  • Dizziness, auras, cold sweat, absences. (Julia R., 35 years old)
  • Grand Mam seizures, absence seizures. (Chris S., 41 years old)
  • Peti man and Grandmal. (Jessica, 42 years old)
  • Simple partial seizures and one grand mal. (Chemaine A., 47 years old)
  • Focal seizures and before surgery, stronger ones. (Karen H., 57 years old)

Epilepsy Facts

What are some interesting facts about epilepsy?

  • He is unable to answer, non-verbal. (3 year old grandson)
  • Epilepsy is abnormal electricity in the brain. (Emma, 17 years old)
  • There is a difference between epilepsy and seizures. (Tyler B., 20 years old)
  • People with epilepsy are smart people just like anyone else. (AK, 21 years old)
  • You can still have a seizure, even if taking meds to prevent it. (Erika J., 21 years old)
  • You can’t swallow your tongue. (Anonymous, 27 years old)
  • It’s unpredictable until five seconds before the attack. (Sean B., 28 years old)
  • It can happen to anyone at anytime. (Mary T., 30 years old)
  • New medicine. (Alvic R., 33 years old)
  • In ancient Greece it was call the “sickness of the Gods”. (Julia R., 35 years old)
  • How many people are affected. (Chris S., 41 years old)
  • I’m totally aware during my seizures. (Jessica, 42 years old)
  • It never goes away. Brain misfires for no reason. You can live a normal life. (Chemaine A., 47 years old)
  • It’s hard to control, or find a cure! (Karen H., 57 years old)

Epilepsy Pain Management

What’s your experience with epilepsy-related pain and pain relief?

  • Use Advil and Tylenol. (Emma, 17 years old)
  • Most medications to combat seizures have very extreme side effects to the point that their personality changes, and takes a turn for the worse. (AK, 21 years old)
  • Muscle fatigue, major headaches. (Erika J., 21 years old)
  • I would say the only thing I can take is Tylenol, because all other pain killers make me very sleepy. (Sean S., 24 years old)
  • Nerve pain, pain from migraines and pain from injuries from seizures. (Alex, 27 years old)
  • Constant elbow pain, headaches/migraines. Advil is life. (Anonymous, 27 years old)
  • Usually it’s very painful during a seizure. I needed to sleep for at least an hour after an attack. (Sean B., 28 years old)
  • After a seizure it feels like I took a beating, and for relief I need to sleep one or two days. (Julia R., 35 years old)
  • I always had fear in my seizures. (Karen H., 57 years old)

Epilepsy Difficulties

What are the hardest aspects of living with epilepsy?

  • Watching our grandson have so many fits. (3 year old grandson)
  • Not being able to drive. (Emma, 17 years old)
  • Not being allowed to serve my country. (Tyler B., 20 years old)
  • One never knows when the next attack can come. It becomes very hard to plan anything. (AK, 21 years old)
  • Knowing I could die from SUDEP at any moment, and knowing I won’t be able to comfort my family when I’m gone. (Erika J., 21 years old)
  • Not being able to drive. Not having the job I want. Not having the friends I want. Always being treated with disrespect. (Sean S., 24 years old)
  • Loss of confidence in your body to operate normally, and not betray you. Isolation from not being able to get out and about by yourself, and not being able to drive. Feeling like a burden on your loved ones. (Alex, 27 years old)
  • Always being tired and the depression that comes with it. (Anonymous, 27 years old)
  • Unpredictable seizure attacks. (Sean B., 28 years old)
  • Not being able to be alone. (Mary T., 30 years old)
  • Working while having this disease. (Alvic R., 33 years old)
  • Not knowing when a seizure is going to happen. (Julia R., 35 years old)
  • Not being able to care for myself in daily tasks. (Chris S., 41 years old)
  • Being unable to hold a job, and unable to drive. (Jessica, 42 years old)
  • Having seizures is the hardest aspect for me. (Chemaine A., 47 years old)
  • Being tired and not able to drive. (Karen H., 57 years old)

Epilepsy Advice

What words of encouragement/advice can you share with others who are epileptic?

  • He has just had surgery and the difference is amazing. (3 year old grandson)
  • Don’t give up after having just one seizure. Don’t let epilepsy win. You are much stronger than you think you are. It may seem hard now but if you always look at the positive side of things it will seem a little easier. If you really need some in-depth advice and encouragement go to experiencemylifeweb.wordpress.com. (Emma, 17 years old)
  • Don’t give up. (Tyler B., 20 years old)
  • You are smart people, and one day there will be an AED that will work. (AK, 21 years old)
  • Listen to doctors, talk to other epileptic patients to compare experiences. (Erika J., 21 years old)
  • I would say always stay true to yourself, and just be you- don’t let anybody judge you for who you are. (Sean S., 24 years old)
  • Take it a day at a time, and remember sometimes your feelings aren’t really your own feelings, they are the side effects from the drugs. (Alex, 27 years old)
  • Don’t let it take over your life. You might have Epilepsy, but it doesn’t have you. (Anonymous, 27 years old)
  • Life is still too good, even living with epilepsy. Never compare your life with those who don’t have one. (Sean B., 28 years old)
  • Don’t give up. (Mary T., 30 years old)
  • Keep moving because God is guiding us. (Alvic R., 33 years old)
  • Hang in there, be happy for a day without a seizure, and hope for tomorrow. (Julia R., 35 years old)
  • Support system is important, and you can’t let it define you. (Chris S., 41 years old)
  • It is what it is! I always say have the seizure, and carry on. (Jessica, 42 years old)
  • Be patient with yourself. Don’t let this disease stop you from experiencing life. Learn how to meditate. Don’t feel sorry for yourself. You can live a normal life. (Chemaine A., 47 years old)
  • There are good doctors looking always for cures. (Karen H., 57 years old)

Epilepsy Diet and Exercise

What’s been your experience with diet and exercise?

  • They haven’t worked for me. (Emma, 17 years old)
  • It’s difficult to maintain diet and exercise. (AK, 21 years old)
  • Started doing yoga, moved and walked around a lot from previous job. (Erika J., 21 years old)
  • Exercise is difficult because you need individual supervision, so I can’t just go to gym alone anymore, or go swimming. The drugs have also made me gain a lot of weight. (Alex, 27 years old)
  • I eat and drink whatever I want. I don’t really exercise anymore, but that’s due to a sports injury. (Anonymous, 27 years old)
  • No restriction with diet, but doing mild exercise only. (Sean B., 28 years old)
  • Be very careful of weightless meds, as some will effect your seizure or the meds. (Mary T., 30 years old)
  • No coffee at all. (Alvic R., 33 years old)
  • I exercise a lot, but because of the meds I can’t lose weight- not even with diet (try to avoid juices, NO alcohol). (Julia R., 35 years old)
  • I love to workout. (Jessica, 42 years old)
  • I eat very healthy- no meat. I exercise five times per week. Stress reduced. (Chemaine A., 47 years old)
  • Try to manage them. (Karen H., 57 years old)

Epilepsy Treatments

What’s been your experience with treatments (medication, surgery, etc.)?

  • Drugs haven’t worked, steroids made him worse. (3 year old grandson)
  • I have gone through many medication and had a VNS surgery only to find out that it doesn’t really help. (Emma, 17 years old)
  • A lot of surgery. (Tyler B., 20 years old)
  • Medication- no luck, either they do not control seizures, or have extreme side effects. (AK, 21 years old)
  • Sucked. Having Depakote made me hallucinate. So I definitely don’t recommend it. Make sure to take meds according to weight. (Erika J., 21 years old)
  • I have been through so many medications my whole life, and finally found the right medication for me and that would be Topiramate. (Sean S., 24 years old)
  • Medication has been a lot of trial and error, and difficult to see the positive to all the side effects. (Alex, 27 years old)
  • I’ve been on a lot of medicine. I have intractable epilepsy, so no medicine will really work. I’m not a candidate for surgery, nor would I ever get it. (Anonymous, 27 years old)
  • Medication, head injury lead to intake of pain killers (in ICU). (Sean B., 28 years old)
  • Medications- in fact six different kinds. (Mary T., 30 years old)
  • Anti-convulsant, tried many drugs. (Alvic R., 33 years old)
  • Medication, the same for the past 22 years. Even with the side effects the doctor refuses to change, or listen to me about feeling bad with this. (Julia R., 35 years old)
  • Two temprole lobe surgeries (with no success). (Jessica, 42 years old)
  • Medication. (Chemaine A., 47 years old)
  • I had surgery, but they couldn’t take it all because of my memory. I have tried a lot of meds that don’t work at stopping them fully. (Karen H., 57 years old)

Epilepsy Recommendations

Anything you’d recommend for someone with epilepsy?

  • Ketogenic diet. (3 year old grandson)
  • Don’t let epilepsy define who you are- sure they are a part of you, but no matter what, that’s all- they are a part of you. (Emma, 17 years old)
  • You’re loved. (AK, 21 years old)
  • Keep your chin up. There’s a good amount of people going through the same thing you are. You’re not alone. (Erika J., 21 years old)
  • Talk to your doctor as much as possible, and find the right solution to your epilepsy. Always carry a piece of medical ID on you at all times just in case something does happen, for example a medical bracelet or necklace, and if you are allergic to nickel or metal I would suggest carrying a medical card with all your info on it. (Sean S., 24 years old)
  • Embrace technology. The Apple Watch reminds me to take medication, and can detect my seizures, and calls my husband when I have them. It allows me to call for help from it when I am away from my phone if I fall. For someone young it’s a tad more stylish than an old lady emergency call button. (Alex, 27 years old)
  • You’re not alone. There’s a world full of us. (Anonymous, 27 years old)
  • Stay positive and happy. (Sean B., 28 years old)
  • Service dog, if possible. (Mary T., 30 years old)
  • Be calm, patient, and find something to help you relax (yoga, meditation). (Julia R., 35 years old)
  • Learn to accept it, and live your life to the fullest. (Jessica, 42 years old)
  • Be patient with yourself. Having this disease can make you feel alone. It can make you feel depressed. Feel confident in yourself to tell people, and just live your life. (Chemaine A., 47 years old)
  • Make sure you have a good doctor!! (Karen H., 57 years old)

Epilepsy Resources

What specific resources have you found most helpful?

  • The epilepsy nursing team. (3 year old grandson)
  • My family and friends. (Emma, 17 years old)
  • The Coping with Epilepsy Forum and epilepsy.com. (AK, 21 years old)
  • Online group support. (Erika J., 21 years old)
  • My doctor and also a Facebook page called Epilepsy/Seizure Support and Discussion. (Sean S., 24 years old)
  • See above answer about the Apple Watch. (Alex, 27 years old)
  • Epilepsy Foundation, local epilepsy foundations, support groups on Facebook. (Anonymous, 27 years old)
  • The internet. Talking to other people, so I can listen to others’ experiences and learn about different treatments. (Julia R., 35 years old)
  • Church. (Jessica, 42 years old)
  • Research, talking to my doctor. (Chemaine A., 47 years old)

Epilepsy Stories

Share an experience you’ve had related to living with epilepsy.

  • It is life-changing for the whole family, but it has made our other grandson who is five, accepting to anybody who is a little bit different, and made him very caring. (3 year old grandson)
  • Life is unpredictable. (AK, 21 years old)
  • I had a vehicle wreck because of a seizure behind the wheel. Totaled the car. Broke the electrical pole. Nobody but me was hurt. I’m thankful every day that I survived. (Erika J., 21 years old)
  • I have to many to share. One would be, one day I was walking to work on a path to the Public Transit System here in Oregon called the (Max), and I was feeling fine, and all of a sudden I fell to the ground right by the train tracks and started to have a seizure. Luckily I did not fall on the train tracks, but no one was around, and I had been there for about 20 mins alone before some one saw me. I busted up my nose and arm, and got a ride from the paramedics. (Sean S., 24 years old)
  • Epilepsy is being fine right up until you’re not. I made myself a cup of tea the other day, and whilst picking up the mug I dropped it, then collapsed onto it, and had a seizure. I woke up alone on the ground paralyzed in a pool of blood. I was able to call my husband and an ambulance from my Apple Watch, and get help. I ended up needing stitches on my back and my scalp from the pieces of the mug I landed on. A simple, everyday task that in a split second became dangerous. My husband wanted to ban me from using breakable things, but that just makes me feel like even more of a five year old. I’m already not allowed to shower without supervision, or drive or do anything alone. So it’s a constant struggle between maintaining safety and independence. (Alex, 27 years old)
  • I was hospitalized for two weeks due to head injury after a seizure (Status Epilepticus). I was sent to the ICU for close monitoring. Despite the pain, I thought it was still a positive moment of my life, thinking that I could have died. (Sean B., 28 years old)
  • Jobs aren’t very accommodating. (Mary T., 30 years old)
  • Loosing “time” every day and conversations. In the workplace, I need to triple check my work, because sometimes I don’t remember if I did it or not. (Julia R., 35 years old)
  • I had to live with parents again so I can be monitored, and helped as needed. Losing memories. (Chris S., 41 years old)
  • I lived alone for many years and took care of myself if I had a seizure. At first I was really scared and my mom would come over. I’ve had a few times where I couldn’t get my seizures to stop. In most cases it was caused by too much stimulation or a lack of sleep. I felt really down when I was first diagnosed. I felt like no one would want to be with me. I wouldn’t be able to get pregnant. I am now married, and we adopted a baby girl. I stayed up plenty of nights with her, and didn’t have one seizure. Keep hope alive. (Chemaine A., 47 years old)
  • There are always people with worse things!! (Karen H., 57 years old)