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Living with Epilepsy is hard
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Haneef16 posted:
hello. My name is Haneef and Im 16 years old. I have many different medical issues including epilepsy that have made it impossible for me to attend school regularly, hang ot with friends, or simply leaving the house on my own. Its very hard sometimes because my seizures are frequent and sometimes happen during the most inconvenient of times. The medication I've been prescribed isnt helping and I've had many different tests and doctors visits. The symptoms and disablements of having epilepsy along with my other medical conditions can be spirit-breaking and depressing sometimes. Although I still manage to laugh and smile I have days I feel so alone and depressed. I just need someone to talk to thats going through a similar situation and has epilepsy as well. I really need some companions that I can talk to about it all and that will understand. Whoever took the time out to read this, thank you. I need more support from people that can empathize with me. If you can direct me to other great support groups I will greatly appreciate it. God bless you.

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5frogs responded:
Hello! Welcome to the community!

My name is Cathi. I'm not as informed about things as others are but I 'lurk' and read posts from others. I found this to be extremely helpful! I try to read (be read to) as many posts as possible. Getting my children to read these to me is not an easy task over summer. You see I am legally blind along with seizures. I'm pretty new to this as both my problems started a year and a half ago. I will tell you these Ladies and Gents on here are great. They are good at replying with informative helpful tips and resources. Sometimes it takes a few days but don't get discouraged! Someone will come to help.

So about finding someone in your area. Have you tried your search engine for support groups near you? I don't know where you are but a lot can be found online. Also stay with us here to make our 'family' more diverse. Doesn't matter what if anything you post. Questions, vent, ramble, ect. is always welcome. I know from experience.

Cathi
 
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saxofone1 responded:
Hi Haneef,

Welcome to the family. My first seizure was just before I turned 14 back in '75. I understand your frustrations of depression, isolation, and high absenteeism(did I spell that right...lol).

As far as support groups go, we are here for you. Check with your doc or a local hospital to see if there is one near you. Also check www.efa.org for local sites. Is there an Ep foundation near you?

Most of my classmates stopped visting me when word spread about my ep. There are a few who have ridden this roller coaster with my since day 1. Don't let the cowards discourage you.

Do you recall when your first seizure was? What meds are you currently taking? Are you seeing a general neurologist or an epileptologist(seizure specialist)? I ask these questions so that we can get to know you better. It helps us know how to help you.

Please believe that you are not an epileptic but someone who has epilepsy. I'm sure there is much more to you than an overactive brain. Think out of the box. I feel that you have a lot of attributes so do your best to focus on your abilities not what the ep hinders you from doing.

You have reached out to us for support so you have taken a big step towards living positively. Share with us whenever you feel the need. Do not be shy about asking us questions.

angie
 
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dancer86442 responded:
I Haneef, I belong to such an organization. WebMD Epilepsy Exchange has been my Home for over 25 yrs & I try on a daily basis to help those who visit us w/ their questions & concerns. I try to advise them on how to cope by what others have taught me as well as what I have Learned thru Research & shared. Many Others' have formed other organizations/info/support groups. Epilepsytalk.com started her own page. I have a group on Facebook, as Ed can testify to. Plus, I am admin to 2 other Support groups on FB. One is an Organization. National Seizure Disorders Foundation, The Founder has dogs Trained & placed w/ families whose children need a service dog. Plus, she just went into 'business' w/ Emfit. They produce seizure monitor mats. Plus, she has a Page where you can Learn more & get support.

I can understand what you are going thru. I am reminded every day I take my pills. But, it took 10 yrs for DRs to find a med that worked for me. Every 6 mths I had a new DR &/or a new med to try. Some ppl luck out & the first med they try Works for them. Others are on the Dr/med merrygoround for yrs. It takes a Lot of Time & Patience. A Lot of 'trial & errors'. But, there is something you can do to Help Yourself & your Drs. Keep A Daily Journal! Please clik See All & read our Journal Info. :0

Did you know Epilepsy can Cause Depression. Or it can be a Side effect of Medication. Either way, there is a way to deal w/ it. Sunshine on your face & shoulders 15 minutes a day. OR Vitamin D3. Start w/ 1000Iu & work up to 5000IU if needed. Just be sure to tell your DR. You are Not Alone. Not by a Long Shot! Did you Know 65 Million people world-wide have Epilepsy? They predict 150,000 New cases w/in the States in the next yr. But, Lots of Famous People, Inventors, musicians, Olympic Star Swimmer Micheal Phelps & Many More have had Epilepsy, also. Dating back to the BC's in history. Want to know Who? Visit epilepsytalk.com & use her Search Tool located in the menu. No need to join to read her articles. Only if you want to reply. You have taken your first step & shared your journey w/ us. But, we have so much more to add. I hope you make yourself at Home here & become a member of our Family. Hugs!
 
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Haneef16 replied to dancer86442's response:
Thank you so much! I didnt know Michael Phelps had epilepsy! I knew the singer Prince did. He's one of my inspirations because I want to be a musican/ producer. This info was very helpful. Ill check out that website. Epilepsy is just one of quite a few medical conditions I have, so thats why I feel so overwhelmed sometimes. I had a disussion with my mom last night. I told her how I was scared to go anywhere alone because I may have a seizure. I had one the night before when me and my mom dad and little sister went to Safeway. Mom asked me to get the yogurt in the next aisle, then next thing i know Im waking up on the floor with my parents trying to revive me and concerned shoppers and employees crowded around. But what she explained to me was she does not want me to be afraid to leave the house because of what "may" happen. She wants me to see the world and not miss out on life because of my conditions. She also told me to trust in God and believe that when I walk out of that door I will be alright. Im going to start strengthening my faith and build up more optimism. Positivity is the best thing to have and with people like you on here, I know now I have more people I can confide in and will help me learn and understand much more, and encourage me to keep on going, not lose hope and do the things I aspire to do in my life!
 
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Haneef16 replied to 5frogs's response:
Thank you for replying! I also read through alot of the posts people put up on here. Many of these stories, including yours are very inspiring. I feel like all the stressful things going on i my young life right now is to strengthen me. The mother of one of my friends told me something very wise: we all go through a test for a testimony. God puts tests and challenges in our lives so we can share with others how we got THROUGH them and how we overcame them and grew stronger We can now tesify to other people and inspire and uplift them. I believe thats what we're all doing on here. Im researching different support groups online becuase I have multiple medical conditions that can be disabling. I live in Washington DC by the way. I also have severe migraines, which alone are very overwhelming. Those are caused by a condition called Chiari malformation of he brain. It causes your brain to slowly enlargen, growin out of your skull's capacity. So my brain presses on other nerves, as well s the nerves of my spine, which causes the back pain. in an odd way, it's also the cause of my excruciatingly painful menstrual cramps. I also inherited glaucoma from my father. He was very helpful and understanding with me when I had my glaucoma surgery in December last year. My father is also legally blind. He's one of my biggest inspirations, becuase he went through a similar situation when he was younger that Im going through now. He had difficulty attending school regularly because of he problems he had with his eyes. So he was out of school alot like I am now. Speaking f which I will nowbe homeschooled for many different reasons. I beliee thats the best thing to do now. but anyway what amazes me about him is that he's legally blind with glaucoma in his left eye(he completely lost sight in his right eye) but the way he draws would convince you to believe he has 20/20 vision! I mean his works just blow me away! He's really into comics and superheroes so thats his drawing style. So even through his disablement he can still do what he loves and be an expert at it! I want to be a musician/producer and writer. I love playing musical instruments(especially piano) and I love writing. Ive had a love for music since the tender age of 2 years old, and since elementary school people have always been moved by my writing skills. So Im working on all my crafts and learning the most I can right now so I can pursue my life goals in the future of being a great musician and writer. Since you're also legally blind, I hope the story about my dad has uplifted you in a way. His story, my story, and your story says that even though we're adisabled, we can still do the things we love and live a fulfilling and successful life. Thank you Cathi for replying and welcoming me to the family. I think this site is one of many great support groups Ill be a part of.
 
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Haneef16 replied to saxofone1's response:
Thank you for replying! I really appreciate the support and compassion from the people on here. Yes I am seen by a neurologist and he's very good. I've had alot of tests done, but unfortunately we have yet to find the right medication or combination of medications to treat them. So I have them frequently and theyre different types. I have pseudoseizures, absence seizures, fainting spells, and now convulsions. I was diagnosed by my first neurologist in 2011 when I was in the eighth grade. Thats around the time my health gradually began to decline because I was also having severe migraines, back pain, and was diagnosed with glaucoma. My parents said that it started when I was around 4 or 5 I would have these periods where Id stare out. They would wonder why Id tell them I didnt hear what they said or remeber something they told me to do. They thought I was daydreaming or not paying attention, but they were really silent seizures. So I've had it for some years and we didnt even know until they really started to hit hard around spring 2012. in your fifth paragraph you told me the same thing my mom told me: focus on my abilities and not what epilepsy hinders me from dong. I love music and the arts. I play piano, trying to learn guitar(its a struggle Lol) and I love writing and painting though I havent painted anything for over a year now . Thats because my family cant afford a trip to the arts and crafts store yet. My dad's an artist too(he draws). He's the most talented artist I know and he's legally blind and has glaucoma in the only eye that works( he lost his right eye). However his skills would make you think he has 20/20 vision! I mean you should see most of his works! Theyre amazing! He's my greatest inspiration. But my mom told me to work on my crafts and learn and do as much as I can on my own right now since I dont have any tutors or mentors for music. Im writing my first fictional novel so she told me to keep writing everyday. She wants me to live and enjoy my life and not be afraid to go outside in the world on my own. My dad too. Thank you Angie for reaching out to me. Your testimony and words of encouragement were very uplifting
 
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saxofone1 replied to Haneef16's response:
Hi Haneef,

It's unfortunate that so many young kids with ep go undiagnosed for the reasons you mentioned. A student in a pre-K class had wandered away from the play area one day. When he didn't respond, the teacher became upset with him. Fortunately I recgonized his aimless motions. I asked the teacher to find out if the student had ep. When I saw her the next day, she said that I had made the right conclusion. She was very grateful for my awareness.

Don't be discouraged about the meds. Many of us on this site have been a med roller at some time or other. I certainly have been. Be patient, and ask your doc(and us) all questions.

Your father sounds like an exceptional person. I dabbled in writing in high school and in college. Somehow whenever an official letter needs to be written, people turn to me. I enjoy writing. It often helped me relieve some stress.

Are there any on-line free music classes? Just a thought. Take care.

angie
 
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5frogs replied to Haneef16's response:
Hello Haneef!

I am so sorry for not replying sooner! At least I warned you it might take a few days. Anyway It's great that you know what you want to do with your life. I'm 32 and I have 5 kids. I have no skills to speak of. I love music but you don't want to hear me sing! I can pick out a tune on the piano with one hand but I don't read music. I haven't worked in 7 years so nothing there. I'm lost. My Mom says that i'm only good for birthing babies, (she was joking I hope.) The only thing I really enjoyed is reading. It's hard to not read now so I listen to audio books while I clean house. This is my life now and I get along just fine.

So I'm Happy for you and your Dad. It's very inspiring for me too see you both Follow your dreams. You have such insight to uplift others and at such a young age! I can only hope that some day I can get the perspective you have. I am still in adjustment mode learning how to cope with decreased visibility and the chance of a seizure. I'm not so afraid for myself, I worry for my children. I've learned though they are very resilient.

Keep following your dreams I hope you get where you want to be. Maybe in the future I will get to read the book you are working on!

Hope you are having a great week with every thing!

Cathi
 
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hula_dancer73 replied to 5frogs's response:
Aloha,

I have had E my whole life and it was NEVER DX'd.

I ran aroun with it noy knowing it, I had really Bizarre behavior that was chalked up to a behavior disorder by my dads sode of the of the family. I was so abused it was funny. Thrown across around the the room beat my head on the wall till I paseed out pusej me ooff the atic landing to whinc the was niithing bit grass and ground bekiw uut. and that is just some of I t.

That may have started bring it out some. KI had a traumatic birth as well. cord around my neck.

it was brouohg out flull blown E when I had a car accident and hit a tree head on and trashesd mhy car and me as well. That was in dec of 02 and 8 mths later the night before my first college I had my firat sz t/c. nEEd less to say the next was a ttotla wash-out for me. I remember nothing about my graduation.

I am 40 and have 4 drugs one is going going yp nt be gponh yo nr be gone Monday, THen I will beon 3 with a Vagus Nerve Stimultor a swell.
I live on O'ahu in West Honolulu-GO UH Warriors!


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