Epilepsy & Lupus: My Rocky Road

Hi, my name is Vanessa Jimenez, and I was first diagnosed with Epilepsy in 2008 before lupus. I was getting partial and grand mal seizures and my doctors don’t know what’s the cause. One rheumatologist suspects I might of had lupus before epilepsy but it was never diagnosed. Anyways my story begins with my anti-seizure med Trileptal. I was prescribed Trileptal in 2008 for my seizures. I hated to take it, I mean what 11-12 year old loves taking huge pills for a condition she doesn’t even understand. Put that together with the fact that I was getting bullied for my seizure and that’s a huge reason not to want to take the medicine. My mom even told my doctor and I had to see a therapist to understand why I should take my medication. Eventually, I had a bad seizure in a coffee shop in 2013 and my nurses and mom convinced me to take it regularly. Before that, I was taking it when I wanted too. Missing doses almost every day.

The winding road to my diagnosis

After the summer of 2013, I started getting pain almost everywhere. I could just tell my body wasn’t the same but no one would believe me. Fast forward to the winter and I was miserable! I had developed a cough that would NOT go away, I was super pale, I could hardly walk up the stairs, I was really weak. One Sunday I developed strep throat and my body had, had it! I was burning up with a fever, on the couch not being able to drink/eat anything. I was flopping back and forth like a fish because my lungs hurt that bad. It was pretty intense pain, I had to be carried to the shower at 10 pm and then fell asleep with a fever (if I ever even fell asleep). The next day my mom finally took me seriously and heeded my advice. We went to the hospital and man did I get a lot of tests taken. The most alarming one was the X-ray of my chest. My lungs were underwater, literally! I had so much fluid in my chest it was almost up to my neck. And not only that but the sack around my heart was starting to fill up with fluid as well, I could of gotten a heart attack any day! God is merciful! I was transported to Boston Children’s hospital since I was only 17 at the time and diagnosed with Drug-Induced Lupus. I also had pneumonia, anemia, and a whole bunch of other ailments I don’t wish to discuss.

Drug-induced lupus recovery

Fast forward to late 2015 I had taken a 3rd shift job and was still recovering from the drug-induced lupus. I had decided to stop taking my steroids in October because I felt “good” enough. I see a rheumatologist January of 2016 who tells me my Lupus has almost healed. Then I go back in April of 2016 after being told I should be better and I get diagnosed with Systemic Lupus. I decided to become a holistic nutritionist in 2017, but let’s just say that only helped temporarily. Stress gets in my way sometimes, I get really bad PMS which is when I usually tend to seize, a lot!

Increased frequency of seizures

In 2018 I had almost over 100 seizures, which I don’t think had any correlation to my lupus. But in 2019, late July, my lupus flared pretty bad, and let’s just say I had this bad chest pain. It really hurt when i took a deep breath much like it does now. Every night the pain intensified, and one night I said goodnight to everyone normally with my 4-year-old niece who slept with me. I did not wake up the next morning. I seized for about 4-6 hours. The actual time is unknown. All I know is my niece told the first person she saw getting up which was my brother, that I was exploding, and my brother didn’t listen to her thinking it was children things. At 10 am, 4 hours later, my mom has been knocking on my door because I scheduled a bible study for her and found me seizing with blood coming down my neck. I was not breathing and had to get CPR, and flown to Boston. I was hospitalized for 12 days, intubated for 2. 12 days in total. They told me my lupus had flared and that’s when I began to see the correlation between my seizures and my lupus. As of today, I’ve had a couple of partial seizures thanks to herbs that have interacted with my meds but I’m doing better. I get bad shoulder pain when I have gluten or some triggers but I usually have learned what my triggers are. I love to encourage others. Bible study, walk my dog and help others in any way I can.

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