True stories of epilepsy warriors

After having epilepsy for eight years I have only just learned to accept it. I have since discovered a whole new community, who are strong, friendly and inspirational. I have enjoyed reading a lot of the stories and want to share my own- starting with a quote I love:

 “I’m not an epileptic. I’m important. I matter. I can do anything. I’m a sexy, strong woman that happens to have epilepsy. Do you get it? I have epilepsy but it’s not who I am.” ― Ray Robinson, Electricity.

You’re telling me I have epilepsy?

The doctor radiates calm, satisfaction as he tells me I will probably have epilepsy for the rest of my life because it is the result of scarring on the brain. Already my cheeks are itching again from that hot salty liquid. Crying is my natural state at the moment. He is impatient. “You’re lucky to be alive,” he tells me “not many people who have had brain hemorrhage are as lucky as you”. It seems an odd word to used to describe my situation. “I’d rather be dead” I reply. Or do I? It’s only in my head I said that? Or do I scream it at my mum afterward? I’ve tried to push through the blurred shapes and mixed up sentences that form my memories of being seventeen but cannot locate them- I do not remember who I said them to, or when. My brain was so exhausted from the explosion, the seizures and the constant crying that it did not have the energy to store memories for later, it was surviving on its basic functions. 

I’m twenty-five now and more able to put my situation in perspective- to realize that I was fortunate I survived the hemorrhage (perhaps better wording than I was fortunate?) There were all sorts of reactions going on in my brain, however, they were beyond my control. Almost every person I have spoken to with epilepsy has encountered deep bouts of depression.  I really wish someone had told me that these thoughts that my life was not worth living might have been part of epilepsy itself. This is a fact that needs to be more widely known! Then we can stop being ashamed of the thoughts as we learn to stop being ashamed of the seizures!

Then they found a medication, which was more better than the one before. I still had partial seizures when I was stressed or tired but no tonic-clonic seizures. I went to university in one of the most beautiful cities in the world. Sometimes when I’m walking I just have to stop and appreciate how lucky I am to live here. That word again- lucky. When I think of all the opportunities I had there, I guess I was lucky. 

Through becoming public about my epilepsy I realized it was time to learn a lesson I was not ready to learn in that doctor’s office at seventeen. I need to accept epilepsy before moving on with my life- find ways of coping with it, learn to be open that I have it, know when I need to stop. Going back to the quote right at the start of this story- it is only through recognizing that I have epilepsy but knowing that it does not define me that I can move forwards and do whatever I want.

Michael’s story: Everything is under control now!

My fight against epilepsy started 4 years ago with a sinus infection. We’ve all had sinus infections. The headaches and sinus pressure that tag along always seem to be mild, but not for me. I went to the doc, was placed on medication, yet the headaches continued to get more severe.

On a Wednesday, in February 2016, I woke up in the ICU surrounded by my family. Seconds later a nurse ripped a breathing tube out of my mouth. I’d been in the hospital for 6 days and induced into a medical coma. I was in a coma to keep me stable while a team of doctors tried to find medication for an infection that developed between my brain and skull. So how’d that happen? The mucous that didn’t drain via my nasal passageways traveled upstream towards my brain!

The previous Friday I collapsed at home. I assume from a seizure. A friend found me unconscious and rushed me to the hospital. After a CT the infection was found and needed to be “cleaned out” by removing bone from my skull. I had my first handful of seizures in the ICU. I’m told that attempts to calmly bring me out of a coma resulted in tremors and full-body shaking.

I spent almost two weeks in the hospital. Most of it doing rehab. I lost most basic motor skills on the left side of my body. Gripping utensils, learning how to walk, and other movement patterns had to be regained. You can call it whatever you want…a miracle, lucky, or fortunate…but the reality is most people don’t survive the condition I was in.

I truly didn’t know anything about seizures. I’ve been active, healthy, and athletic my entire life. In the beginning, my seizures were frequent, at least a couple a day, and seemed to get better with weeks.

As my activity level increased I started to have more seizures. I found myself waking up in the hospital, collapsing in random places, and the high doses of medications kept me angry and irritate. The psychological impact of everything I had been through beat me up and almost tore me apart.

I wasn’t myself. My appearance had changed from the surgery since I was missing a portion of my skull. I also lost my job due to my inability to perform. As much as my family and friends supported me I’ll always remember them not being there as much as I needed.

After 6 months, I had a second surgery to reconstruct my skull with a plastic plate. After the surgery, the seizures seemed to get worse, and I was basically starting all over again. It took almost a year to get back working and getting my life back on track.

I struggled with managing my seizures for a few years. It’s only till recently that I seem to have everything under control. Being able to identify what my triggers are and preparing myself for those days a seizure might happen has been positive. Its taken 4 years to get here and I still have a little way to go.  But the “why am I on the ground” moments are gone. I have just under 10 seizures a year, typically tonic-clonic. I also have seizures in my sleep. Having a seizure and of course, the moments right after is still scary. It only reminds me of those moments a few years ago when I was at my lowest. A seizure also reminds me to push through and continue to fight. I guess you can say I’ve accepted epilepsy as part of me, but every day I’m learning more about myself, and I am focused on being seizure-free and helping others fight this condition.

Jane’s story: How do I not get lost at sea?

It’s never easy, this trail we must blaze as ones with chronic illnesses.  Just that phrase alone sounds so disgusting, chronic, but at the same time, it sounds like it’s not enough as if it’s a word used for the common cold or that some even use for strains of drugs. So what separates me from, how do I not get lost at sea? Truth is I have no idea.

My seizures began a little over six years ago now and I still have yet to gain control. One fateful night a crash and a blow to the head would forever change my life. In the beginning, my seizures were daily and ranging from ten to seventy in just one day. I was hospitalized for a long time until they regulated me enough to finally go out in the world again, but even then it still wasn’t to be so.

For the first few years, I treated my body like trash, was non-compliant with meds, drank, and tried to do things Drs told me I couldn’t. I didn’t want to accept my new life, I wanted to rebel against what I thought to be the end. Eventually, I ended up hurting myself very badly when I fell off a cliff and almost drowned, trying to cliff dive. It wasn’t overnight but I have come to terms and embraced instead of expelled my epilepsy.

Things are still hard, but I am not giving up! I have learned to be my own hero in this fight. My seizures have gone down to mostly monthly, and I am on three seizure medications at the moment. Sadly the years of meds and things have caused many other health issues, but I am pushing on. Regardless of judgments or stereotypes, it feels very lonely at times, but it’s also hard for people to understand. They may never get it and it’s sad, the public is grossly uneducated and it’s scary.

If I could say anything to anyone out there I guess it would be I know you feel very alone at times but you are never, we are all in this fight together, and you must be your own hero no matter how hard it gets!

Melissa’s story: My brain was dead on the one side

I wasn’t born with epilepsy. I suffered a TBI (Traumatic Brain Injury) leading to two strokes one at 5 and one at 14. I wasn’t supposed to live I died 3 times on the table. Sadly they figured out fast after my strokes and accident (TBI) I had really bad brain damage. Seen by MRIs and CT scans my brain on one side was dead. With that, I had a long list of serious medical problems to go with it including epilepsy and recurrent seizures. In recovery doctors said I wouldn’t walk, talk, be able to feed myself or do anything I used to. But I overcame that I shocked that one day after the other. From wanting to feed me to wanting to brush my own teeth. I wanted to do things by myself I didn’t want to sit in a wheelchair, so I got up out of that wheelchair and day by day learned yet again how to walk.

As I got older my seizures were ok, not that bad, some days good some days bad but there were days they were out of control and to the point where I was admitted to the hospital as a teenager for weeks.

As an adult (29) now they are not under control we’ve talked about surgery and those options are out because of dead places on my brain I could possibly be left a vegetable. The VNS (Vagus Nerve Stimulation) is out because of my strokes. We are now trying more cocktails of medications and are hoping they work. Having epilepsy prevents you from a lot but not from living your life, so be strong and live your life!

Dr. Ali Elahi

This article is written by Dr. Ali Elahi, a specialist in neuromuscular disorders, certified by the American Board of Psychiatry and Neurology (ABPN). His expertise includes evaluation and treatment of patients with epilepsy, stroke, headache, neuromuscular disease, and cerebral palsy.He also manages neurological emergencies in the Intensive Care Units.

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