Community Forum Archive
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Living With Seizures
Thu, 06/20/2019 - 19:47Topic: Share Your Story
Hi, I'm Jasmine I'm 26 & I've been living with seizures for 3 yrs now.. I also have Rheumatoid arthritis and I've been dealing with that since I was 12.. I go to riverside regional medical center (edited by admin) I was diagnosed with a seizure condition back in may of 2016 I was put on medicine and the seizures got worse , I have headaches back to back & my doctor doesn't know what the issue is I've had sleep studies & two EEG 24/hr tests but STILL no answers as to what's causing them.. My doctor explained to me that something on the left side of my brain is causing me to have seizures and that I also have swelling in my eyes but they can't tell me why I'm still having them.. I have hallucinations in my sleep and my dreams are so bad and scary that I can't go back to sleep I live in (edited) VA but I am willing to see another specialist that can help me better because the seizures interfere with my arthritis and I take a lot of medication. I am desperately looking for help .. If anyone can help me please chat with me because my story doesn't end. This is only half of what I'm going through
Comments
Hi JasmineI edited out some
Submitted by Anonymous on Fri, 2019-06-21 - 10:05
Hi JasmineI edited out some personal details for safety as this is not a closed group. Suggest looking at what ConnectHelp shared - list of finding and epilepsy specialist is great idea. Wishing you the best
Hi JasmineLynch0227, Thanks
Submitted by Anonymous on Fri, 2019-06-21 - 09:52
Hi JasmineLynch0227, Thanks so much for sharing your story, it sounds like you’ve been through a lot. For information regarding second opinions or assistance finding a specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist & https://www.epilepsy.com/affiliatesYou may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. It may be helpful having ad device that can help track seizures, by visiting: https://www.dannydid.org/ , and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Additionally, the Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools