The Patient Voice- Epilepsy member Letitia shares her story

Posted September 25th, 2014 by

 

 

What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how she’s helping others through her own experiences and the data she’s donating on PatientsLikeMe.

 

 

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22 Comments

  1. Excellent. THX.

  2. My youngest son has has seizures started right after birth. scary yes thanks for sharing

  3. I was 3 mos. old when my seizures started at a frequent 3 to 4 grand mal seizures a day. My doctor didn’t believe my mother and until I had a very severe one that eliminated my reflexes for several hours! I was seven at the time and had no help until then. It was then I started going to Boston Children’s quite often and put on chewable Dilantin and Phenobarbital. The drs. kept increasing my medicine till I could no longer stay alert and awake at school…it was awful. I’m 61 today and take no medication…still have seizures, but medication no longer helped. It’s sad I didn’t get the help I needed. I never could drive a car. Drs strongly suggested I not marry and definitely no children. I married when I was 19 and have 3 beautiful children and 5 grandchildren!!

  4. It been good to hear that you’ve been able to get some enjoyment back in your life, epilepsy can be very isolating.

  5. Hi, I’m 55yrs. old and I have had seizures since I was born , when I was young nobody would allow their children to play with me and when the Dilantin quit working they put me on keppra and depakote, I have lost my license well last time was over a year until I could get them back, I have grand mal and could die without my medicine, I was in nursing and now on disability due to my seizures

  6. So glad surgery healed your epilepsy. Like you, I have had epilepsy since the age of eight, but it cannot be healed with surgery. However, 15 years ago I met a lady whose husband had been healed of his epilepsy through the power of prayer

    I then got to know The Lord and in 2012 the Holy Spirit promised I would be healed of my epilepsy. It hasn’t happened yet and the longest I have been seizure free is five weeks. I usually have seizures every 10 days, But try not to let my epilepsy rule my life.

    My husband and sons cope very well with it and we all see it as a nuisance. However, I know The Lord keeps His promises and am patiently waiting to be healed.

    Bye

    Helen

  7. I had epilepsy for 33 years. I say had because on June 11, 2005 exploratory surgery found a petite blood clot in a small vein within the right side of my brain. With the use of the then new tool Laser Beam the blood clot was removed. With its removal my problem was also removed. Since that time I have done many things to aid others who have not yet experienced the good feelings of cure to their problem.

  8. My story is very similar to yours. I started having seizures at 22 & I’m now 31. This has and is a very rough journey for me. I see my epileptologist every 6 months and my seizures have yet to be controlled. I am up to 14 pills/day & unable to drive. I also cannot work and I’ve been denied SSI three times. I’m happy that you were able to get back on your feet. Hopefully I will be able to soon as well.

  9. Did you recieve my post.

  10. I was diagnoed 38 years ago with epilepsy. My seizures are not controlled but are mild now compared to the tonic/clonic seizures I had when I was younger. I had to change my major many times going through college and ended up with going for a major in psychobiology. I wanted to figure out how the brain and nervous system actually function. I know a lot about epilepsy now. I have taught doctors and specialists about my findings. I have found out things about epilepsy that you cannot even find out in a Phd level neuroscience book. I was explaining epilepsy to a young teenage girl that had epilepsy and knowing psychology I could understand the look on her face that I was finally someone that understood what she was going through. It was that day that I decided to stop being ashamed of my condition and to start teaching others about what epilepsy actually is and explain to them first aid for epilepsy the do’s and dont’s and to teach them as much as I can about epilepsy. I have been doing it now for over 7 years. My goal is to try to remove the stigma that is associated with the condition. Most people have no idea what it is and what to do if they see someone having a seizure or how many different types of seizures there are. I have had atleast six or seven different types myself. I’m sharing what I know to as many as possible. I just wish more people with epilepsy would so people can understand it. I’m trying to crush all the myths about epilepsy too. When people understand then their fear will be gone. As of this time I believe there are over 40 different types of seizures. People may disagree with me but I have facts to back it up.

  11. I feel for all of you that are affected by seizures. I am not. By reading all your courageous posts, I realize how blessed I am by my LORD and Savior. I have MS, but my condition just does not seem as bad as others on this site. I will pray for you All. I Thank GOD that he has created me the way that I am and Blessed me with His beautiful world to engage in. As one of the posts says, This was a for a reason. :))

  12. I take non epileptic seizures I’ve been diagnosed with over 20 problems fibromyalgia and cfs is another two but my problems have got worse since I was in an induced coma because I got nf and was told if I was another half an our longer getting to the hospital I’d be dead I can’t find any support groups or if anyone can help me start up a support group that would be good

  13. I had my first seizure when I was five years old. They built up until I had over 100 a day. Medicine would work for a bit but then break through again. I was losing function on my right side because the affected area was on the left side of my brain. I fell a lot and began using my non dominant left hand to write, eat, brush my teeth and other things. Threw a series of MRI and cat scans, I was diagnosed with Rasmussen’s Enchepalitis – a slow growing brain disease which destroys one good hemisphere. Treatment was to removed the affected side via a hemisphectomy . It was a difficult time but after several grand mal episodes, I clearly asked that I had no more seizures and didn’t care what it would take. Dr, Ben Carson performed the 14 hour surgery and I woke without seizures. I then fell into a two month coma. My parents were frantic but Drs Carson and Freeman were confident I would. Wake up.i did wake up and have been seizure free and drugs free for 24 years! I am happy, very busy and love my life!

  14. Thanks .
    this is good info. I just met a girl that have had seizures will pass this info. on to her.

  15. I controll my seizures with lots of good fats for the brain. And don’t forget to take care of your gut/need lots of kefir,kim chi, overall, fermented foods The gut is very ,very important.

  16. Hello everyone,

    I’m sorry for the late response. Thank you all for your comments. I wish you all health and wellness despite some of you or a loved one not have a permanent solution to improve your condition. I continue to share my story to uplift and inspire others. I’ll be flying to DC on Monday to participate in a live webinar by an awesome company out there called Partnership to Improve Patient Care (PIPC). This first time ever innovative webinar is designed to continue getting the word out and to change governmental policies to benefit patients. If you are interested in registering for this free webinar, please visit http://www.pipcpatients.org/PatientEmpowermentWebinar.php?utm_medium=email&utm_source=invite&utm_campaign=pipc_advocacy_research_20150116 for information on registering for it. Also, please feel free to contact me for any questions or any further assistance I may provide.

    Sincerely,

    Letitia

  17. I am waiting to have VNS surgery and to hear of other people having different types of surgery does help me so much feel more optimistic about things. My medication over the last 12 years has been changed but nothing has ever kept me seizure free for more than a few weeks if I’m lucky. I’m very pleased the surgery has helped you. Take care x

  18. Let it a, your experience is so up building. Very happy for you.

  19. Letitia, your experience is so up building. So happy for you.

  20. I was diagnosed with complex partial seizures at age 50. Prior to this, I had several grand mals. I was still working at this time. The meds were very sedating and it became difficult to concentrate. I was denied disability twice until I contacted a company that helped people with their claims. While still working, I was on my way home. Another driver watched me go off the highway hitting a telephone pole and down into the woods. He called 911 and pulled me out of the car. I must have had angels around me. I was rushed to the hospital with no injuries. At the time, I was taking less of the prescribed amount of meds because of the side effects. I was advised from the beginning not to drive. Once my disability claim was awarded, I continued to drive because there is no bus service in rural areas. Once again years later, I went off the street and the suv flipped over. I came out of the seizure, with the fire department breaking the car windows to pull me out of the car. Once again, no injuries except for a sore back. Both times no other cars or people involved. I have not driven for several years now. Initially family and friends were super cautious around me. I am lucky that I have a very supportive spouse. The neurologist told me that people who ever suffered from migraine headaches for a long period of time sometimes turns into a seizure disorder. I often do feel a sense of isolation, but try to keep busy. Stress and lack of sleep are often triggers. Would like to join a support group

  21. I cannot get your video to play the audio sadly but desperately would like to communicate with others who have had surgery for epilepsy. I had mine this winter and am still recovering. Having had 3 major parts of my brain removed…terrifying. Anyone out there?

  22. Hello everyone,

    Sorry for the late response again. I don’t get the notifications when someone posts a comment here. I hope all of you are well. Here is the link for the above video for those who aren’t able to view it as well as two others that I’ve done since then. Let me know if I can help you any.

    https://www.youtube.com/watch?v=pLXqqpQF1TU

    https://www.youtube.com/watch?v=paZda0fitqo

    https://www.youtube.com/watch?v=odZZr18-fhg

    Letitia

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