Loving Someone With EpilepsyPosted on by
When Zayan first told me that he has epilepsy, I didn’t believe him. “You mean seizures, right?” I was embarrassed at how much I didn’t know.
Epilepsy is a disorder of the brain that triggers recurrent seizures. It can be caused by different conditions that affect a person’s brain. A person is diagnosed with epilepsy when they have had two or more seizures that are not caused by another medical condition such as a high fever or low blood sugar.
Zayan was thirteen years old when he had his first seizure in his school computer lab in Dhaka, Bangladesh. “The moments leading up to my seizure are hazy, but when I woke up in the hospital, my mind was wiped clean. I didn’t recognize my own father, whose tear-strewn face was fixated on mine. I couldn’t even remember how to talk.”
Following the incident, Zayan took a long break from school to seek medical care. He was diagnosed with idiopathic epilepsy, which is caused by an unknown factor that may be genetic. Epilepsy can be caused by different conditions, including stroke, brain tumor, brain infection, or traumatic brain injury. Zayan is one of the 60% of people where the cause of epilepsy is unknown.
Caring for someone during a seizure
As my friendship with Zayan grew, I became passionate about understanding how epilepsy impacted his daily life. One morning I witnessed a seizure suddenly take over his body and it was one of the most frightening moments we shared together. That experience made learning seizure first aid a priority for me so that I could take care of Zayan if and when he had another seizure.
If you know someone living with epilepsy, you might have to care for them during or after a seizure. The goal of seizure first aid is to keep the person safe until the seizure stops on its own. Stay with the person until the seizure ends and he or she is fully awake. After it ends, help the person sit in a safe place. Once they are alert and able to communicate, tell them what happened in very simple terms. Comfort the person and speak calmly.
You can take action to help someone during a seizure:
- Ease the person to the floor.
- Turn the person gently onto one side. Loosen ties or anything around the neck that may make it hard to breathe.
- Clear the area around the person of anything hard or sharp to prevent injury.
- Put something soft and flat, like a folded jacket, under his or her head.
- Remove eyeglasses.
- Time the seizure.
- Check to see if the person is wearing a medical bracelet or other emergency information.
- Keep yourself and other people calm.
Call 911 if…
- The person has never had a seizure before.
- The person has difficulty breathing or waking after the seizure.
- The seizure lasts longer than 5 minutes.
- The person has another seizure soon after the first one.
- The person is hurt during the seizure.
- The seizure happens in water.
- The person has a health condition like diabetes, heart disease, or is pregnant.
Knowing what NOT to do is also very important for keeping a person safe during or after a seizure. Never do any of the following things:
- Do not hold the person down or try to stop his or her movements.
- Do not put anything in the person’s mouth. This can injure teeth or the jaw. A person having a seizure cannot swallow his or her tongue.
- Do not try to give mouth-to-mouth breaths (like CPR). People usually start breathing again on their own after a seizure.
- Do not offer the person water or food until he or she is fully alert.
Supporting someone with epilepsy
After his first seizure, Zayan struggled to understand how epilepsy would affect his life – Can I still play soccer? Will my friends still like me? Will my friends and family look down on me or look at me differently? Will the cost of my medicines be a burden to my family? Will I be a burden to my family?
The first medicine Zayan was prescribed helped his seizures, but caused a lot of side effects, including rapid weight gain. After finding a medicine that worked for him, Zayan spent years learning to overcome the medicine’s effect on his mood and relationships. He is grateful for the support he received and that those close to him were able to come to terms with his condition.
With the support of his family and friends, Zayan has learned to keep his seizures in check and lead a normal life. Today he has aspirations to become a pharmaceutical researcher who finds effective treatment methods for coping with epilepsy.
Resources for family, friends, and caregivers
If you have a loved one with epilepsy you can:
- Learn about epilepsy.
- Learn seizure first aid.
- Listen. Sometimes this is the best form of support.
- Ask what you can do to help.
People who take care of someone with epilepsy should learn everything they can about the disorder, and the specific type of seizures their loved one has. Caregivers can work with their loved one’s healthcare provider to learn about treatment options, manage medicine side effects, and address other medical conditions the person may have. Caregivers may also benefit from connecting to others in their community who also deal with epilepsy.
- CDC: Information for Families and Friends
- CDC: “You are Not Alone” toolkit for parents of teens with epilepsy.
- CDC: Managing Epilepsy
- CDC: Epilepsy and Disaster Preparedness
- Epilepsy Foundation
Update: At the authors request, the images included in the original post have been updated.
33 comments on “Loving Someone With Epilepsy”
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Great blog; grew up with an older sibling with Epilepsy, learned at a very young age on how to deal with his episodes. he over came his seizures and when on to live a very productive life.
Such a beautiful story and beautiful couple. Thank you so much for sharing. This was a very quick, simple, and personalized explanation for how to provide seizure care, and I learned a great deal. I wish you both the very best in your continued support for each other and especially to Zayan in all his endeavors. Very proud of him!
Great blog post. This really gave me some optimism with seizures which scared me as I never knew anything about them.
This will help reduce stigma.
I live with a person who has eplispsy, but I think he has extreme anxiety does that come along with eplispsy,? Also sometimes I wonder if we enable him to not do anything for himself. He does not work and he is afraid of doing anything outside of the house. I am frustrated , and feel angry .
Thank you for sharing your concerns with us. It’s hard to see someone we care about struggle with epilepsy. Anxiety is very common among people with epilepsy. In fact, about half of people with seizures feel anxious or depressed. Between the unpredictability of seizures, side effects from medicine, fear of having seizures in public, and other worries, epilepsy can be a lot to manage. These things can also make it hard for someone with epilepsy to have a job. CDC has tips about managing epilepsy here: https://www.cdc.gov/epilepsy/managing-epilepsy/index.htm.
There is help available for both of you from CDC and our partners at the Epilepsy Foundation.
CDC’s Find Support page has links to online and telephone-based help for people with epilepsy and their families and friends: https://www.cdc.gov/epilepsy/managing-epilepsy/find-support.html.
If your loved one is still having seizures or a hard time with side effects from medicine, he may benefit from seeing an epilepsy specialist: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center.
Your local Epilepsy Foundation may also have in-person support programs for both of you: https://www.epilepsy.com/affiliates.
My daughter suddenly started with tonic clonic grand mal seizures at 19 out of the blue shes 23 now and nothings controlling them .I feel anxious all the time follow her about due to horrendous damage shes done with injuries due to the seizures .I basically work around her and have no life apart from her I really carnt do this any more pls help
Some people are able to stop their seizure medication. This should only be done with your doctor’s advice and help.
If you haven’t had any seizures in at least 2 to 4 years, your doctor may help you slowly stop your medication.
it is important for a person to follow a doctor’s instructions on how to treat the underlying condition and always buy prescribed meds only. There are too many online stores offering meds online like amazon, healthkart, and mygenericpharmacy etc which are most popular.
I am a 50 y/o black man struggling with grand mal seizures. They started when I was fresh out of high school and man, I have been through it all. I experienced my first workplace seizure in Feb 2018 and has been seizure free since. It was rough due to previous seizures has taken a toll on my body.
My mother has epilepsy and growing up I have 3 brothers one older and 2 younger learning how to deal with seizures from this blog can help save many lives and i feel young children should be taught what to do if mom or dad or any other family member is having a seizure and nobody is around and This blog can help teach young minds what to do.
I don’t have a comment. I have a question. I have currently met this woman who I am interested in romanticly. Could the excitement of starting a relationship bring on seizures? We’re currently talking and taking it slowly. I’m worried that the anticipation alone may trigger a seizure. I am trying to educate myself and want to be prepared for anything that may happen with her illness.
My sister suffers from epilepsy. She has had seizures since I can remember 30 plus years… she falls when walking at malls, shops, at home, EVERYWHERE. she moved out, rents a room somewhere, and won’t see anyone even her son, except for her daughter. When I try call her she speaks very slow than normal and she suddenly hates people. I don’t understand, is this something people with this disability suffer from? I don’t know how to be supportive when she’s pulling away from society, and family.
Best way to calm nerves when out of meds?? Please help
Hi! I don’t think that such a behavior is result of epilepsy. I have epilepsy too. But I’m fine with communication. Some time ago, I have been living alone for 7 years. And now, I joined my family. But now I feel like too much controlled. Yes, I think sometimes about moving out and live alone too.
Great blog btw…. It helped me alot I can now take care of my boyfriend.
I’m also suffering from this disease from past 4years! Hoping that one day I will overcome this!
Hi my name is Rob I have a partner with epilepsy who I live with and we have to children I find it difficult to look after my 2 children and my partner when she has her seizures as o feel like i am constantly caring for her as well as looking after 2 children at same time, i haven’t been able to get a job as evertime she seems to get better and start progressing with her life her fits come back. I love her and my 2 children but sometimes feel angry that I have to care for her when she has her fits and my life seems to go on hold during these times, I recently had to drop out of uni because her fits were getting worse would like to find a job when the time Is right that can support all of us.
Just looking for advice and support thankyou.
great blog…actually everything I have read here has made become positive and be more supportive to my boyfriend coz I’ve jhs found out about his epilepsy😔
It is good to read my feelings are normal. The father of my kids had a work injury in 2014 and has developed grand Mal seizures . Each day is a different journey. I feel like there is no hope of seeing him smile again. The doctors are trying but more and more he seems like he is pushed underneath the rug. I want him to speak with others that have some of the same situations in there life but worry it may not help. I feel it would help me if I was in his shoes but I am not him and I don’t want to make his sadness worse. Unfortunately I have no idea how to help him emotionally. We have tried pills and people to talk to. But still He breaks down often . I have so much love for him it is killing me inside feeling like I can’t help him. He has lost his parents and has no near by family. I am all he has to watch him and help him. I am doing what I can to balance life but I feel as if every corner I am trying to figure out how to make it this week. I dont think anything will come from this message but It feels good to write something……… To say something. Thank you for letting me do so.
NICE YOUR ARTICLE ABOUT THIS TOPIC
I have lived with a partner who has epilepsy since 1992. He has no warning, no aura before. He just had a vagal nerve stimulator implanted but is still having breakthrough seizuring approximately twice a month. I feel like I live in a world of constant sense of alert. My health is not the best. I married this man for better or worse and will not abandon him in his hour of need. How do I not feel so overwhemed?
I was 9yo when I was diagnosed with Epilepsy. Seizures stopped throughout my adolescence and from a young adult, I’m nearly 30 now I have had a lot more seizures tonic clonic and absence seizures. They do effect my life like I can’t go mountain climbing in Scotland with friends, my boss let me go after my seizure at work and now unemployed and I always have 1 or 2 following seizures like yesterday. I have a black eye and my nose bled
How do l deal with a family member who won’t take his medication properly or seek medical care. He hates doctors. He just had his second car accident due to a seizure. I finally had to ask him to find someplace else to live. I can’t handle this emotional roller coaster any more. Am l wrong to ask him to live elsewhere?
I am the husband of a wife who has Epilepsy.
I get so terrified. We have a one and a half and three and a half year old boy and daughter.
I get freaked out and cannot get it out of my mind. I am so afraid because she drives and takes our kids with her. She holds the baby. I look at her like she is going to go down at any moment. It has hurt our relationship; no affection, love, sex, talking. I stay for the kids. I feel bad, but she is most of the time “out of it” because of her meds. Any advice people. I am desperated on how to cope.
This is very helpful! I am with someone who has epilepsy, and I am trying to learn all that I can… I care about him so much, and would love to be there for him, an expert at it all eventually! Thanks!
My 46 year old daughter has suffered from siezures for about 12-14 years. How can I help her?
My husband use to have seizures 10 years ago and we just got married 3 months ago and suddenly he started having them again .He gets it during night only & it happens for less than 2 mins. Its been 5 times in 3 months. First time was very shocking. Its still very hard for me to sleep in night.
Being 51 and having epilepsy is tough. I also had a VNS stimulator plus Left temporal lobe surgery. I still have seizures but not as many. I don’t thin I will ever be understood.
As the mother of two adults with epilepsy, I sometimes believe the seizures are worse for the caregiver than for the person having the seizure. People with epilepsy do experience anxiety and depression, and it is very helpful for them to find support. If they don’t want to go to a group – finding one online through social media can help a lot – it has really helped my daughter. I think you have to encourage them to LIVE! It does take bravery to walk in their shoes, but I’d say encourage them to go out of the house at least once a day. Go to a park, lay on the grass, take a walk in a safe place. Also having pets can help. That said, I think caregivers need to give themselves some grace too. You do tend to live with a sense of high-alert a lot of the time. When the phone rings, when you hear a siren, when you hear your loved one in the other room and they drop something. It is scary. Meditate, take a break, and realize that you can’t control everything. Do the best you can, but you aren’t God. Sending love to all.
It’s very easy to say that my life got impacted due blah blah person as he /she has problem of epilepsy. Its sm times cn b hard but most of all care is needed for the person that’s it .the person life is as hard as rock as nobody interested in his life nobody cares as they think he is not enough to do that thing and he has problem. This is worst behavior of which mostly people are scared of .
My bf has epilepsy and I thought I understood or knew him well until our most recent argument. I love the man so much, but I don’t fully understand what he is going through internally and physically and it hurts me. I take everything so personally to a point that we argue because he can’t control how he is feeling. I want to continue loving and supporting him and need some advice if anything, thank you.
I have had seizures since being 13 been married twice got a 27 year old daughter I am 52 now living with a partner after my second partner left me because they could not life with my seizures there problem I take my meds all the time it just does not control them never as but they know when we got together now my new partner is brilliant with my seizures I just don’t think they understand the emotions that you feel the seizures are hard enough the emotions are much worse a roller coaster in your head
I do not have a comment.. I have a question and I hope someone could answer my question sincerely… my boyfriend has epilepsy, his last seizure was last year February.. he’s an online boyfriend though. I haven’t met him and I wanna know if we could kiss, hug and have sex if we meet…. I wanna know if it’s could transfer sexually..
And I wanna know if it’s possible to overcome epilepsy.. he’s never stayed up long without having seizure.. but he’s used a year and 7 months now without seizure.
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