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I feel like I'm drowning.

Mon, 09/16/2019 - 18:53
Hi. My name is Juliana. I am 24 and have had epilepsy since I was 6. I have epilepsy in the form of twitches and zoning out during the day and once a year gran mals at night that cause me to sleep walk. I am drowning. I'm writing this as I'm sobbing in the back of the grooming salon at work. Because I screwed up for the fourth time because of zoning out. My parents gave me the minimum in guidelines to things. My epilepsy is making it hard on my relationship and I can't keep any friends. I have depression and almost killed myself back in high school. I don't know if I should go on disability or try to keep working. I couldn't even finish college. 4 years ago I got put on Keppra that made me tweak so bad I scratched my face bloody. Every doctor I see thinks I'm a lost cause. Someone help me.

Comments

Juliana,No person is a lost

Submitted by birdman on Mon, 2019-09-16 - 20:30
Juliana,No person is a lost cause.  There is hope and help for you.  If you are not receiving care for your depression get it soon.  It is common for persons with epilepsy to experience depression and it needs to be part of the treatment just as much as the seizures.  I tried getting off of my antidepressant<, Zoloft, several years ago and it was awful.  My thoughts were often filled with ideas of how to kill myself.  In a few weeks I was put back on the Zoloft again and it made a great difference.  Also if your doctor sees your seizures as a lost cause you may want to get an epilepsy specialist.  With today's new treatments there is greater hope for getting comfortable control.  But a specialist is necessary for many of these treatments.  But perhaps your depression is leading you to feel that your doctor thinks your case is hopeless.  First get the depression under control and then see how things change.I'm on Social Security Disability Income.  It was a fight that I would not want to attempt while severly depressed without some other assistance.  The SSA makes the effort tough.  Do not think that getting on disability means you cannot work.  Just like me and many others your seizures, depression, and social problems all make employment more difficult.  You can keep trying to work and searching for a college path, but you may also collect disability as well.  Go to the Social Security Administration website www.ssa.gov  or visit your local office.Mike

Michael offers some great

Submitted by Patriotrehab on Tue, 2019-09-17 - 00:20
Michael offers some great advice. I would advise you to be prepared for an epilepsy specialist to suggest that you may have PNES though because of your depression. This is a theme at epilepsy centers and so be prepared for them to say that they want to do VEEG to see what your episodes are like as part of “differential diagnosis” especially because you have depression and intractable epilepsy. It happened to me and others that I know. Thankfully, I just completed my VEEG and proved to my new doctor and his resident that I only have epilepsy. You may also want to consider vocational rehabilitation services in your state. They may be able to help you find a job or retrain you in a job that you are better suited for or is more fulfilling. 

Hi Juiliana,  Thanks so much

Submitted by Anonymous on Tue, 2019-09-17 - 10:05
Hi Juiliana,  Thanks so much for sharing your story, it sounds like you’ve been through a lot. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone. However, it’s important to remember that you are not alone, and we do have resources available that can help. If you ever need to speak with someone immediately, please contact our 24/7 toll-free helpline:1-800-332-1000,  epilepsy.com/helpline  or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/ One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns  It’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   It is common for those living with epilepsy to experience feelings of depression, so it’s important that continue follow-up with your healthcare team (that you’re comfortable with), to discuss these feelings. My Seizure Diary, is a great tool that can be shared with your healthcare team & family, to help track seizures, record medical history, medications, side effects, moods, behaviors & triggers: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryAdditionally,you can review our seizure alert device fact sheet with your doctor, to see if a seizure alert device is an option for you:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfIf you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion.For information regarding second opinions, or assistance finding an epileptologist (epilepsy specialist), please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist  Michael, Gianna & Marcus have offered great advice and support! You can learn more about our disability resources here: https://www.epilepsy.com/living-epilepsy/legal-help/disability-resourcesExplore the employment section of our website, to help manage the impact of epilepsy on your work: https://www.epilepsy.com/living-epilepsy/independent-living/employment-help-what-you-need-knowIn many communities, the local Epilepsy Foundation offers programs that help people with epilepsy to find jobs, by visiting: epilepsy.com/localsupport    

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