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?

  • Staring, moments of dizziness, falling (Elizabeth, 2 years old)
  • 12 fits a night  (Fabian, 4 years old)
  • Grand Mal seizures,  (Elizabeth M, 15 years old)
  • Dizziness and deja vu (Allyssa, 15 years old)
  • Deja Vu, Confusion, Words that I know what I’m trying to say, but they don’t come out right, tired afterwards (Cassidy Jackson, 15 years old)
  • Tiredness memory lost no warnings  (Susan H., 16 years old)
  • Having seizures (Emma, 17 years old)
  • Dizzy, headaches,  shakes  (Kalee D., 18 years old)
  • Not remembering what I was doing before  (Grace Ward, 18 years old)
  • Nothing (Tyler B., 20 years old)
  • Drowsiness, memory loss, biting tongue, extreme fatigue , headaches/migraines, muscle fatigue (Erika J, 21 years old)
  • Tonic Clonic Seizures (AK, 21 years old)
  • Grand mal seizures (Hadar, 21 years old)
  • Absences  (Kirsty, 21 years old)
  • Aura, panic attacks, gran mal seizures (Brooke, 21 years old)
  • As for me it’s just sudden attack of seizure (Girlie S., 21 years old)
  • Ringing Noise (Ears), Hot Flush/Flash, Headache/Migraine, Nausea, Bite Marks (Mouth), Incontinence, Tunnel Vision, Blurred Vision, Lines/Zigzags (Visual), Weakness (One Side), Memory Lapses (Short Term), Slurred Speech, Pupil Dilation, Strange/Unusual Behaviour, Fatigue. (Bethany P., 21 years old)
  • Partial and Complex seizures, Grand Mal seizures. Not to mention, headaches, bruises, broken bones, painful teeth, popped blood vessels, vomiting, weigh gain, weight loss, weak limbs. I could go on!  (Rhiannon, 23 years old)
  • Partial complex Seizures  (Anonymous, 23 years old)
  • Nausea, Dizziness, Tiredness, Fatigue  (Sean S., 24 years old)
  • Grand mal and abscence (Jess, 25 years old)
  • Fatigue, seizures, fainting, nauseous, headaches (Hannah, 25 years old)
  • Dizziness, staring spells, muscle spasms (Jennie, 26 years old)
  • Tonic clonic seizures, aura, migraines, todds paralysis of left side after seizures for up to 48 hours.  (Alex, 27 years old)
  • Aura’s, headaches, tiredness, zoned out (Anonymous, 27 years old)
  • Seizures, migraines, vomiting, distorted vision, afterwards incontinence (Kristina, 27 years old)
  • Absence, Seizures (Tonic-Clonic Generalized) (Sean B., 28 years old)
  • A lot of discomfort and pain (Marc, 28 years old)
  • Severe headache before seizures  (Mary T., 30 years old)
  • Insomnia, migraines.  (Tracey, 30 years old)
  • Lip smacking, staring,  (Alvic R., 33 years old)
  • Grand Mal seizures, Absence seizures and Focal seizures (Kristie O., 33 years old)
  • Dizziness, auras, cold sweat, absences. (Julia R., 35 years old)
  • Grand Mal seizures, absence seizures. (Chris S., 41 years old)
  • Peti man and Grandmal. (Jessica, 42 years old)
  • Mostly loss of memory and headaches, dizziness, and confusion. (Angela, 42 years old)
  • Tiredness, emotional, can’t sleep well at night. (Lisa R., 45 years old)
  • Simple partial seizures and one grand mal. (Chemaine A., 47 years old)
  • Tonic-clonic, complex focal, simple focal seizures. Short term memory loss, confusion, slow thinking, brain fatigue. (d’Avid, 54 years old)
  • Focal seizures and before surgery, stronger ones. (Karen H., 57 years old)

Epilepsy Facts

What are some interesting facts about epilepsy?

  • Hyperactive (Fabian, 4 years old)
  • I have a few different types of seizures (Allyssa, 15 years old)
  • Sides affect (Susan H., 16 years old)
  • Epilepsy is abnormal electricity in the brain. (Emma, 17 years old)
  • 1 in 65 million are affected, it can happen at any time (Kalee D., 18 years old)
  • The fact that medication stopped my seizures within 4 days! (Grace Ward, 18 years old)
  • “There is a difference between Epilepsy and seizures” (Tyler Bolla, 20 years old)
  • You can still have a seizure, even if taking meds to prevent it (Erika J., 21 years old)
  • People with epilepsy are smart people just like anyone else (AK, 21 years old)
  • It’s very easy for others to forget you have it. For better or for worse. (Hadar, 21 years old)
  • It can start from a severe heat convulsion (Brooke, 21 years old)
  • To be honest I don’t have any idea 😊 (Girlie S., 21 years old)
  • 1. 99.5% of the time, I’ve always had a warning. 2. Before having seizures I had only fainted once. 3. There’s a possibility that my seizures are linked to my Autism. (Bethany P, 21 years old)
  • Lights affect me sometimes, depending on how my brain is feeling that day – it is not as simple as ‘photosensitive or not’. (Rhiannon, 23 years old)
  • After being diagnosed at 3 years old, I apparently grew out of epilepsy when I was 12 years old only be told at the age of 25 it was back (Jess, 25 years old)
  • For me, being in direct sunlight for too long induces seizures.  (Hannah, 25 years old)
  • It’s more common than people know (Jennie, 26 years old)
  • You can’t swallow your tongue (Anonymous, 27 years old)
  • How many different types there are and yet not many people know about it (Kristina, 27 years old)
  • It’s unpredictable until 5 seconds before the attack (Sean B., 28 years old)
  • how it hits the brain (marc, 28 years old)
  • Can happen to anyone at any time (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)
  • Its horrible. And people don’t understand us. (Angela, 42 years old)
  • Tonic clonic seizures, complex partial seizures. (Jen N., 43 years old)
  • Not everyone knows I have it. (Lisa R., 45 years old)
  • It never goes away. Brain misfires for no reason. You can live a normal life. (Chemaine A., 47 years old)
  • If you do not have seizures, there is no way you can understand what having one is like without some serious conversation with someone who has them. A text book will not, can not do it justice. (d’Avid, 54 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?

  • She’s two. Unfortunately, she’s not able to communicate how she’s feeling (Elizabeth, 2 years old)
  • Belly ache (Fabian, 4 years old)
  • Just resting after a seizure (Elizabeth M., 15 years old)
  • Pain (Allyssa, 15 years old)
  • Trying to keep it together (Susan H., 16 years old)
  • Use Advil and Tylenol (Emma, 17 years old)
  • My head hurts for a long time after having a seizure (Kalee D., 18 years old)
  • Mine isn’t severe enough (Grace Ward, 18 years old)
  • Nothing (Tyler B., 20 years old)
  • Muscle fatigue, major headaches (Erika J., 21 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)
  • The tongue hurts after a seizure because you bite it hard (Hadar, 21 years old)
  • Anger migraine tired all time (Kirsty, 21 years old)
  • Bit my tongue and pulled some muscles in a seizure (Brooke, 21 years old)
  • Whole body pain, headache, and I bite my tongue every time I had my seizure (Girlie S., 21 years old)
  • General over the counter pain relief doesn’t really have an effect on me anymore. (Bethany P., 21 years old)
  • It doesn’t work, go to your doctor do not suffer on with over the counter if it just isn’t working for you.  (Rhiannon, 23 years old)
  • Have no pain (Anonymous, 23 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)
  • Diazepam – settles the nervous system and jerking and sends me to sleep it off (Jess, 25 years old)
  • I have severe pain and no pain relief.  (Hannah, 25 years old)
  • I have frequent headaches and take Advil for them. (Jennie, 26 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)
  • Due to seizures I have cut my head open split my lip a few times come out with so many bump and bruises but pain relief my body has become immune to a lot of pain relief and the ones that I used to take such at naproxen and tramadol now cause seizures so I’m only left with paracetamol which never did a lot (Kristina, 27 years old)
  • Usually very painful during seizure. I needed to sleep for at least an hour after an attack. (Sean B., 28 years old)
  • Co-codamol (Marc, 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 feel like I have the flu all the time. (Angela, 42 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?

  • What are the hardest aspects of living with epilepsy?
  • All of the things she misses. Whether it’s the things going on around her that she misses during her seizures or all the things she doesn’t even get to do for fear of her falling and hurting herself. (Elizabeth, 2 years old)
  • People see my son as naughty. (Fabian, 4 years old)
  • Not knowing when the next one will happen, not being sure if I will be able to get a driver’s license or not. (Elizabeth M., 15 years old)
  • Having to tell people that you have epilepsy in case of an emergency. (Allyssa, 15 years old)
  • Knowing I can’t get my permit until I get my epilepsy under control. (Cassidy Jackson, 15 years old)
  • Keeping your kid safe. (Susan H., 16 years old)
  • Not being able to drive. (Emma, 17 years old)
  • Can’t drive. (Kalee D., 18 years old)
  • Having people judge you all the time and having people laugh at you when having a seizure. And also not having people actually aspect you for who you are 😫. (Grace W., 18 years old)
  • Not aload to serve my country. (Tyler Bolla, 20 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)
  • One never knows when the next attack can come. It becomes very hard to plan anything. (AK, 21 years old)
  • “Coming out” telling people and then they respond with “but you look normal”. (Hadar, 21 years old)
  • The migraines. (Kirsty, 21 years old)
  • Not knowing when the next one will hit, loosing your license and people judging you when applying for jobs. (Brooke, 21 years old)
  • The thought of anytime or anywhere you will just attack of seizure even while I’m just typing this, and you cannot drive anymore that was sad. (Girlie S., 21 years old)
  • Not knowing when I’m going to experience another aura/seizure. (Bethany Prowse, 21 years old)
  • People doubting your ability. People constantly thinking you can’t do stuff, or you need help/watching. I’m a grown adult who has had this condition longer than you have known me, trust me when I say I’m okay right now. (Rhiannon, 23 years old)
  • Unpredictability. (Anonymous, 23 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)
  • Adjusting to life with epilepsy. Not being able to drive, losing independence trying to explain it to others. (Jess, 25 years old)
  • Not being able to have very many normal experiences without having seizures. (Hannah, 25 years old)
  • Having to carry my medication with me everywhere I go because I can’t miss a dose. Having to tell people I have epilepsy and what to do if I have a seizure. They instantly freak out. Having to accept that I don’t have complete control of my body and no one can explain to me why I have epilepsy or what triggers my seizures. (Jennie, 26 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)
  • One minute your fine the next you have to spend a few days recovering cos your body has just done something you have no control over. (Kristina, 27 years old)
  • Unpredictable seizure attacks. (Sean B., 28 years old)
  • not being able to be alone. (Mary T., 30 years old)
  • No driving. (Tracey, 30 years old)
  • working while having this disease. (Alvic R., 33 years old)
  • Never knowing when the next one will happen. (Kristie Owings, 33 years old)
  • Never knowing when it will happen. A loss of independence and self-confidence. Sometimes you don’t want to leave your home. Sometimes you can’t. Knowing deep down that at any second you could be vulnerable to the world– possibly alone– or sometimes even worse, with strangers. Who knows whether they’re good and would do the right thing, or if they would take advantage of you? Not to mention, depending on how you fell: what you hit your head on, or if you aspirated on your own vomit, you may never wake up! Who would find you? What if you were in the shower? What if it happened while you had your driver’s license–who else would you hurt? The list goes on and on. It’s really just a whole jumble of “what-ifs” and anxiety in your head. Aside from whatever physical injuries or side effects you might experience from your drugs, I find that the psychological thoughts are most crippling. (Heather Hemphill, 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)
  • That people don’t understand why I’m tired all the time. And can’t remember the things I should. (Angela, 42 years old)
  • You can’t do what you really want to do. (Lisa R., 45 years old)
  • Having seizures is the hardest aspect for me. (Chemaine A., 47 years old)
  • Otherwise good folks tend to drop out of your life when they learn you have epilepsy or other neurological things. What are they afraid of learning? (d’Avid, 54 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?

  • None, absolutely none. (Elizabeth, 2 years old)
  • Take each day as it comes. (Fabian, 4 years old)
  • Just live your life as normally as possible, you are not your epilepsy. (Elizabeth M., 15 years old)
  • Be yourself don’t let anything hold you back. (Allyssa, 15 years old)
  • That I know what they’re going through, and I hope they can get there’s under control. (Cassidy Jackson, 15 years old)
  • Just try to keep calm. (Susan H., 16 years old)
  • 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 hype://experiencemylifeweb.wordpress.com. (Emma, 17 years old)
  • You are not alone. (Kalee D., 18 years old)
  • Just be strong! I have struggled for years on end and now I am driving! Just stay positive!!!! (Grace W., 18 years old)
  • Don’t give up. (Tyler Bolla, 20 years old)
  • Listen to doctors, talk to other epileptic patients to compare experiences. (Erika J., 21 years old)
  • You are smart people and one day there will be an AED that will work. (AK, 21 years old)
  • You are not alone and the people that care about you don’t care you have epilepsy. (Hadar, 21 years old)
  • Think positive. (Kirsty, 21 years old)
  • “The world’s you’re oyster – whether you think you can or whether you think you can’t, you’re probably right.
  • Don’t let others make that decision for you. (Brooke, 21 years old)”
  • Think positive and just live happy enjoy the days that we don’t have seizures 💜 and always thank GOD for our everyday lives. (Girlie S., 21 years old)
  • So long as your seizures are under control, you can live a near to pretty normal life style as can anybody else without seizures; if your seizures aren’t under control, never give up hope, there’s a multitude of options out there and it’s just about finding the right one and being persistent and determined to keep on going. (Bethany Prowse, 21 years old)
  • Realize who is there for you, who wants to learn and who wants to stand by your side. It’s difficult but you will find so many people are just out for the attention and drama. Leave them behind, its seriously not worth trying. (Rhiannon, 23 years old)”
  • Don’t give up. (Anonymous, 23 years old)
  • I would say always say stay true to yourself and just be you don’t let anybody judge you for who you are. (Sean S., 24 years old)
  • You are not alone and it does get easier. (Jess, 25 years old)
  • There’s always a silver lining somewhere. (Hannah, 25 years old)
  • Don’t be ashamed for having epilepsy. You can do almost everything everyone else does. (Jennie, 26 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)
  • Don’t give up there are people out there working on something to help get though each day and at the end of the day you can’t change who you are or what you have so just find you own way to deal. (Kristina, 27 years old)
  • Life is still too good even living with epilepsy. Never compare your life with those who doesn’t have one. (Sean B., 28 years old)
  • Try be happy and have a lot of support with friends and family. (Marc, 28 years old)
  • Don’t give up. (Mary T., 30 years old)
  • It will get better once you find the right neurologist and the right medication/ or surgery. (Tracey, 30 years old)
  • Keep moving because God is guiding us. (Alvic R., 33 years old)
  • Never give up and don’t let anyone make you feel less because they simply don’t understand what all epilepsy entails. (Kristie Owings, 33 years old)
  • Try to see any positives in your life. Friends and family and the support they provide are most helpful. Though, I realize not everybody is fortunate to have this love and support. Also, I think it’s important to find an outlet of sorts. Everyone is different but I think a form of expression is important. My outlet is through art and singing. Others might find relief or happiness through writing, or exercise, or even meditation and prayer. Whatever it is, find it! (Heather Hemphill, 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)
  • Know your limits. Be strong. Don’t let it control your life. (Angela, 42 years old)
  • Just take it day by day – STAY Strong. (Lisa R., 45 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)
  • For me, it has been life changing and not, by any means, all negative. In fact I think I have a greater appreciation for all things beautiful. Also, I am seeing beauty everywhere I look. Though I have always had a great appreciation for music, suddenly, even music I never liked before seems like nectar to my brain. (d’Avid, 54 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?

  • Very active. (Fabian, 4 years old)
  • nothing. (Elizabeth M., 15 years old)
  • I can exercise not long before becoming very dizzy and shaky. (Allyssa, 15 years old)
  • Cutting down on small amount and no snacking in between meals. (Susan H., 16 years old)
  • They haven’t worked for me. (Emma, 17 years old)
  • I’ve lost a lot of weight. (Kalee D., 18 years old)
  • I can exercise fine but have to be careful because if I do too much then my head goes a bit fuzzy! And diet is fine, try and fit 3-4 fruit or veg a day. (Grace W., 18 years old)
  • Nothing been good. (Tyler Bolla, 20 years old)
  • Started doing yoga, moved and walked around a lot from previous job. (Erika J., 21 years old)
  • Difficult to maintain diet and exercise. (AK, 21 years old)
  • Keeps my dosage the same. It makes me feel better but that doesn’t have to do with epilepsy. (Hadar, 21 years old)
  • I’ve managed to maintain this. (Brooke, 21 years old)
  • That was hard and deadly but I’m still on diet now. (on a proper way now). (Girlie S., 21 years old)
  • Nothing’s changed, although I have to make sure I take more breaks and don’t over exert myself as fatigue makes me more susceptible to seizures. (Bethany Prowse, 21 years old)
  • What diet? (Sean S., 24 years old)
  • It keeps me sane and happy, distresses me. Stress seems to cause seizures. (Jess, 25 years old)
  • I haven’t experienced any improvements. (Jennie, 26 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)
  • Diet I don’t really have one. I eat healthily to an extent, haha but if I want an ice-cream or a chocolate I will have one lol exercise I walk everywhere and from time to time gym but I don’t overdo it. (Kristina, 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 affect you’re seizure or the meds. (Mary T., 30 years old)
  • no coffee at all. (Alvic R., 33 years old)
  • In general, exercise and diet is important for your health so I don’t think it should be any different if you’re epileptic. Personally, I know I need to improve my diet. (eat more leafy greens) and I definitely don’t exercise enough. I have no motivation. I think that’s my biggest problem. If I were more motivated than I think I would exercise more regularly. Diet-wise, I’m a pescatarian, so I only eat fish and seafood as my protein. (no other meats). It’s worked for me for the past 15 years or so. (Heather Hemphill, 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’m too tired. (Angela, 42 years old)
  • I walk a lot since I don’t drive. (Lisa R., 45 years old)
  • I eat very healthy- no meat. I exercise five times per week. Stress reduced. (Chemaine A., 47 years old)
  • Well, I use my diet, specifically the MAD diet to control my seizures, very successfully. I get exercise, but not enough. I wish for more energy. (d’Avid, 54 years old)
  • Try to manage them. (Karen H., 57 years old)

Epilepsy Treatments

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

  • Tegretol 90% stopped. (Fabian, 4 years old)
  • My meds make me really tired and a little loopy after taking them, but I will take that over having seizures. (Elizabeth M., 15 years old)
  • Nothing. (Allyssa, 15 years old)
  • I haven’t gotten surgery, but I have tried so many different medications! Some give me a rash, some make me grumpy, now I’m on vimpat and to be honest I don’t like taking it, because my parents pay ALOT for it and it doesn’t help my seizures go away completely so what’s the point, but I can’t tell them that. (Cassidy Jackson, 15 years old)
  • Keeping than sorted out in days of the week. (Susan H., 16 years old)
  • 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)
  • I’m on keppra, its doing okay for me. (Kalee D., 18 years old)
  • “Epilim. (was horrendous) made me put on a stone and a half 😫
  • Keppra- absolutely fine The changeover was fine as well! (Grace W., 18 years old)”
  • A lot of surgery. (Tyler Bolla, 20 years old)
  • Sucked. Had Depakote make me hallucinate. So I definitely don’t recommend it. Make sure to take meds according to weight. (Erika J., 21 years old)
  • Medication – no luck, either do not control seizures or have extreme side effects. (AK, 21 years old)
  • I’ve had a pretty good experience only been in two and it worked right away, I have been on my meds 11 years now. It is sometimes annoying to take meds twice a day. (Hadar, 21 years old)
  • Topiramate 75mg twice daily helps with absences but still have continuous migraines. (Kirsty, 21 years old)
  • Several types of medications and lots of scans. (Brooke, 21 years old)
  • I’m on medication now I’m on ivertra, topirol, vimpat other than that I’m on glumet, lipway 😥. (Girlie S., 21 years old)
  • I’ve been on Keppra for a short period, and other than nausea and dizziness it was pretty affective, I’m now off medication awaiting diagnosis confirmation to restart medication from my new neurologist. (Bethany Prowse, 21 years old)
  • Medication is not working. (Anonymous, 23 years old)
  • I have been through so many meds my whole life and finally found the right med for me and that would be topiramate. (Sean S., 24 years old)
  • Lamotrigine I grew immune to, waiting on different medication. (Jess, 25 years old)
  • I have been on the same medication for 16 years. No issue but I have had to have my prescription changed for Higher dosages through the years. (Jennie, 26 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. Not a candidate for surgery nor would I ever get it. (Anonymous, 27 years old)
  • No surgery but meds been on loads the one that I tried and had a bad reaction to were epilim had hallucinations, terete made me sick and groggy, and keppra well that just made me angry and depressed the ones I’ve had okish are tegretol retard it’s a slower release but where I was on it for so long I became immune to it and now I’m on 2 tablets together topirmate and lamotrigine the topirmate wasn’t strong enough on its own so they added the other. (Kristina, 27 years old)
  • Medication, Head Injury lead to intake of pain killers. (in ICU). (Sean B., 28 years old)
  • meds. (Marc, 28 years old)
  • medications in fact 6 different kinds. (Mary T., 30 years old)
  • Depression, tried to commit suicide, weight gain. (Tracey, 30 years old)
  • anticonvulsant, tried many drugs. (Alvic R., 33 years old)
  • I can’t take the meds due to complications with other health issues. (that are probably the cause of my seizures). Started taking Palmetto Harmony oil yesterday to see if it helps. (Kristie Owings, 33 years old)
  • I had to try several drugs before they found the right cocktail. It took a bit of experimenting, but once they found the working combo, I felt “normal.” That lasted for about 14 years! It was incredible because I had my self-confidence and independence back. I could do anything! Then, out of the blue I had a partial seizure, (I was still conscious and I never convulsed), so the seizure was atypical of the ones I’d have over a decade ago. Regardless, my doctor upped my medication dosage. Six months later I had my first tonic clonic in over 14 years. With this one, it was a full convulsive seizure where I lost consciousness. We don’t know why. And it was on my honeymoon! Not a great day for me. My medications were increased again. I can’t drive anymore and I’m dealing with the lack of self-confidence again. I have to start all over. My doctor says that the type of seizures I have would make me a good candidate for surgery, but I don’t have enough of them that it’s worth the risk to me right now. I haven’t had any surgeries. I’m just waiting it out to see what happens next. (Heather Hemphill, 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 temporal lobe surgeries (with no success). (Jessica, 42 years old)
  • Meds work for the most part. (Angela, 42 years old)
  • Left temporal lobectomy, keppra and lamictal. Controlled. Just auroras. (Jen N. 43 years old)
  • A lot of different medications, not a lot of change. (Lisa R., 45 years old)
  • Medication. (Chemaine A., 47 years old)
  • I use the Modified Atkins Diet (MAD) as my seizure prevention. I have been seizure free since November, 2016. (d’Avid, 54 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?

  • Just keep living your life. I still ride horses, go on my scooter, etc. Just be aware of what you can and cannot do. (Elizabeth M., 15 years old)
  • Find someone you can trust and understands you like someone else with epilepsy. (Allyssa, 15 years old)
  • Try to keep your mind backed. (Susan H., 16 years old)
  • 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)
  • Keppra works well. (Kalee D., 18 years old)
  • Make sure that you get as much support as possible and know that you’re not alone and just groups that talk about Epilepsy so you can be helped when your down and then you can help them. (Grace W., 18 years old)
  • Keep your chin up. There’s a good number of people going through the same thing you are. You’re not alone. (Erika J., 21 years old)
  • You’re loved. (AK, 21 years old)
  • Find someone with epilepsy to talk to and don’t let it stop you from doing what you love even if it means working a little harder and taking a longer road. (Hadar, 21 years old)
  • Don’t drink caffeine it’s a huge contribute risk. (Brooke, 21 years old)
  • You need a monthly doctor’s consultation. (it helps a lot) or EEG, MRI? Just consult your doctor regularly. (Girlie S., 21 years old)
  • Take your medication regularly, get lots of rest, eat a balanced diet and drink lots of fluid; avoid anything that you can that you know could trigger a seizure. (Bethany Prowse, 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 medal I would suggest carrying a medical card with all your info on it. (Sean S., 24 years old)
  • Doctors know best. (Jess, 25 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)
  • Honestly even though I had the worst side effect on the keppra it worked the best but not everyone gets them and as I like to say to everyone not everybody is the same what happens to one person could be completely different to another. (Kristina, 27 years old)
  • Stay positive and happy. (Sean B., 28 years old)
  • keep calm. (Marc, 28 years old)
  • service dog if possible. (Mary T., 30 years old)
  • Find the best doctor. Someone who genuinely cares and isn’t just about the “textbook facts”. (Kristie Owings, 33 years old)
  • You were given great strength– don’t ever give up or lose faith. You’re never alone– there are people like you who can help and offer support. Find your outlet and try to do what makes you happy. (Heather Hemphill, 33 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)
  • Keep people close. (Angela, 42 years old)
  • Support is there. Be sure to have it ready and available. (Jen N., 43 years old)
  • Be yourself; don’t change for others. (Lisa R., 45 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?

  • My family is my greatest resource. (Elizabeth M., 15 years old)
  • Groups through Facebook. (Allyssa, 15 years old)
  • Listening to the group on site. (Susan H., 16 years old)
  • My family and friends. (Emma, 17 years old)
  • Doctors, EEG. (Kalee D., 18 years old)
  • Epilepsy society but also the leaflets at the hospital! 👍🏼. (Grace W., 18 years old)
  • Online group support. (Erika J., 21 years old)
  • coping with epilepsy forum and epilepsy.com. (AK, 21 years old)
  • YouTube videos. (Brooke, 21 years old)
  • Medicines. (Girlie S., 21 years old)
  • The epilepsy.org site which I used to help gather information and knowledge of the condition and the specific seizure types I was experiencing. (Bethany Prowse, 21 years old)
  • My doctor and also a Facebook page called Epilepsy/seizure support and discussion. (Sean S., 24 years old)
  • Counselling. (Jess, 25 years old)
  • See above answer about Apple Watch. (Alex, 27 years old)
  • Epilepsy Foundation/ local epilepsy foundations/ support groups on Facebook. (Anonymous, 27 years old)
  • My neurologist. (Kristina, 27 years old)
  • trying to keep a smile. (Marc, 28 years old)
  • Others that have dealt with epilepsy. Medical articles. (Kristie Owings, 33 years old)
  • It wasn’t until my partial seizure that I sought help. Believe it or not, Facebook support groups were rather helpful. It’s nice to know there are others out there like you. And, as mentioned before, you learn a lot. Facebook didn’t exist during my first bout with seizures! If professional help is needed, I’ll always advocate for therapists. They’ve helped me in the past. And, of course: friends and family!! (Heather Hemphill, 33 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)
  • Having people around. (Angela, 42 years old)
  • Epilepsy foundation and support of specialists. (Jen N. 43 years old)
  • Don’t be afraid to explore online support groups. It is easy to be a wallflower and learn alot from those who have come before you. (d’Avid, 54 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)
  • Knowing that I have to take my meds on a regulated schedule and get enough sleep. I had a sleep over once and was up really late and a day later had a seizure. Not much fun when you are a teenager and you want to stay up late, but neither is having a seizure so it is a good compromise. (Elizabeth M., 15 years old)
  • Kind of crazy knowing no one that also had epilepsy until recently in high school I met a girl with it who is now my best friend. (Allyssa, 15 years old)
  • Wrecking my car while having a seizure. (Kalee D., 18 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. Thankful every day that I survived. (Erika J., 21 years old)
  • I was at an event that talked about being inclusive and such. It was nice but at the end there was a concert with many flashing lights I had to leave. I didn’t feel very included. (Hadar, 21 years old)
  • I once had quite a funny seizure, where it was almost as if I had turned into a different person or was dreaming, I didn’t believe what I was seeing was real, and only what I had dreamt I believed was real instead; I was trying to convince my friend that we were on a boat and had to go to Uni and there were drunken guys chasing us. (I had been sleep deprived due to preparing for an EEG). (Bethany Prowse, 21 years old)
  • I have too 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 itself, but no one was around and I had to been there for around 20 mins alone before someone saw me, busted up my nose and arm, got a ride from the paramedics. (Sean S., 24 years old)
  • Going out with friends being the one that isn’t drinking after so many years of being the person who did drink. Being questioned all the time. (Jess, 25 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 in my back and my scalp from the pieces of the mug I landed on. Simple every day 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)
  • So at the shops with my mum my head starts to feel a little off my eyes feel like they are going to the left really fast so my neck wants to go with it so it tenses but twitches that way to I feel myself loosing balance the next thing I know I feel like I’m sleeping for a few mins about 30 mins has past I’m sitting on the floor not sure where I am trousers damp from where I’ve wet myself. (fun times) they’ve. ( the paramedics) realized I’m kinda me again and are going through the 100 and 1 questions what’s you name how old bla bla bla then when I stand up to go to the ambulance I have the realization I have a sore head the go don’t worry we will take a look find out I have slice my head open on a shelf as well as bit my tongue to bits and sliced my lip god know how but that’s one experience from start to finish eyes going funny to getting into ambulance it’s about an hour got told by my mum normally my seizures can last about 5-9 mins it’s just the warning signs and the grogginess after that takes its toll. (Kristina, 27 years old)
  • I was hospitalized for 2 weeks due to head injury after seizure. (Status E.)
  • 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)
  • When I was younger I used to perform more and when we were traveling I had a seizure in the hotel room. I went to the hospital that evening, and then came back and performed on stage in front of hundreds of people that next afternoon. I guess what I’m saying is: ultimately, I never gave up or stopped doing what I loved to do because of that fear. Yes, it bothered me, but singing was more important. I’m going onstage next weekend and it will be my first time performing since my most recent tonic clonic. I’m still not giving up on what I love. Wish me luck! ;). (Heather Hemphill, 33 years old)
  • Losing “time” and conversations every day. 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)
  • Recently given a no-choice choice to take early retirement due to my employers desire not to accommodate my needs. Two years ago, soon after the crash that brought this on, I would never have believed they would not support me through thick and thin. I was wrong. (d’Avid, 54 years old)
  • There are always people with worse things!! (Karen H., 57 years old)