Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Feeling Lost
Mon, 12/02/2019 - 19:48Topic: Epilepsy.com Help
2 years ago towards the end of January I was in a car accident with my two kids, both at the time were 5 and 14. We hit Head on and I hit my head on the steering wheel and passed out, I was sent to the hospital after the accident because my chest was hurting and my blood pressure spiked. I was sent home a few hours later and the next day we were all sore.
Towards the end of May we are all still recovering, and I started to have outbursts of anger and personality changes. I am normally a very laid back person who can deal with anything but now I would get very angry and aggressive and there were days at a time where I would forget where I was or forget days in general. I had my first seizure then and now I have them constantly.
I can have about 30 a month and sometimes 5 times a day. I have figured out they usually are triggered by high stress, lack of sleep, or when something over stimulates me.
Additionally for about 6 months when the seizures first started I was in and out of hospitals and I don't even remember me being in the hospital. Some of them were long visits like a day or two and they all have me take the same medication and that would knock me out for days at a time. Because medication didn't work I was left to fend for myself and my family helped the best they could but they only understand so much. I need a service dog to alert my seizures now because I have fallen on numerous occasions and I am afraid to go places on my own for fear I may fall in public. Some days I don't even feel like getting out of bed in the morning and I feel really depressed. I used to love doing things with my family and now I can't even feel like a person.
I want to live my life as I used to but at this point it seems impossible and I don't know what to do. I found that Seizure Alert dogs could help me getting back to normalcy but their expense at least 10,000 dollars and now I can't express the kind of sadness I feel. My family tried to help but they only do so much to help.
This has not only affected myself but my entire family, I feel embarrassed that I have to rely on my family so much and I don't want to burden them, I know things have changed but I don't want them to think of me as an invalid. I want my husband to see me like he did before not as someone who he has to look after every 5 minutes and watch me drool.
I am in need of any advice and any help groups you have.
Hi, Thank you for posting it,
Submitted by Anonymous on Tue, 2019-12-03 - 10:00
Hi, Thank you for posting it, 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 are here to help support you. If you ever need to speak with someone please contact our Epilepsy and Seizures 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources.1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline 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-concernsIt is common for those living with epilepsy to experience feelings of depression. It’s important that you’re addressing those challenges with your healthcare team, as well as any changes in changes in seizure types, frequency, behaviors,sides effects & symptoms. https://www.epilepsy.com/learn/challenges-epilepsy It is also important to recognize that epilepsy is more than just seizures, your overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health If you have not already, you may want to consider seeing an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with your doctor to see if a seizure alert device is an option you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf For additional information about seizure alert dogs, visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/seizure-dogsConsider keeping a journal or a seizure diary. My Seizure Diary can help identify & track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, recognizing triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamhttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Create a seizure response or action plan, which is a helpful tool for those close to you understand what do if you have a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Learn about treatment, seizure and lifestyle management programs that can help people with epilepsy learn skills to better manage their epilepsy and its effects on daily life: https://www.epilepsy.com/learn/managing-your-epilepsy/what-managing-epilepsy-well-networkContact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.