Yes, I have seizures. Yes, I am epileptic. Over the years my seizures have changed, kind of odd really. But nothing about my disease makes sense, so why would I expect my seizures to remain the same?
We still don't know exactly when I started having them, I was diagnosed at age 16 and we guessed I had been having them for about 2 years prior to that. Why was I not diagnosed sooner? Well, I was raised by a woman who had the attitude that if you aren't gushing blood or on your death bed, there is no reason to see a doctor. No one ever witnessed my seizures prior to the day I was diagnosed. The first few years of my seizures they came at night, in my sleep. I would wake up for a split second and then be unconscious. I would wake up very sore and very tired, sometimes on the floor, having wet my bed... nothing made sense! I wrote it off as nightmares, because I had no memory of anything happening. I never mentioned anything to my parents... I knew what would be said. I said something once tht I was sore and weak, Mom just said I had a bad night sleep. So I dealt with it. I knew something was wrong, but I had no evidence, no proof, and no one to talk to about it!
At age 16 I was in California spending the summer with my uncle and aunt, my parents were in Hawaii. I was at the grocery store with my uncle. I don't remember a thing that happened, just that when I woke up there was my uncle and a few others around me telling me to stay still and paramedics were there immediately. I was taken to the hospital, told I had a seizure. They did so many tests. And asked so many questions! Has this ever happened before? Well, actually... and I told them the stories about my night time experiences. Yep, sounded like seizures. They referred us to a doctor in Salt Lake, and my summer was cut short.
Nothing was ever found in those tests, no tumors or anything that could cause random seizues... it was officially epilepsy. A seizure disorder with no explanation. I continued for a couple years just having those night time seizures, and I started having focal seizures during the day... mostly when I was stressed or had overworked my eyes. A couple medication changes to get me on something that worked... one of the meds had a total opposite effect of its purpose, causing me to have about 20 grand mal seizures a day for about three days until we could get the med changes in my system.
I went thru a couple years of kind of serious drug and alcohol use, not addiction, but heavy use. Interestingly, I went that entire period of time with zero seizures! I really thought they were gone! I had been having anywhere from 10 to 20 major seizures a year to none in about 2 and a half years. Then I got clean. And there they were again.
Then came pregnancy... wow! My doctors had told me hormones played a big role in my seizures, that was an understatement! I was seeing my doctors weekly to be sure my baby was ok and that I was ok, I was on so many supplements to help my meds and hormones get along.
The next few years I started having more day time seizures, awake- altho I always went unconscious. But they would happen at any random time, and more often than before... but somehow weren't as painful. I hated that my daughter had to see that, she didn't understand- all she knew was mom was hurting. Then there was another year or so that I didn't have any, then out of nowhere... they started again, more severe, lasting longer, always ended up with cuts, scratches, bruises, and bumps. It was scary.
The second pregnancy, there was no controlling them. We changed meds, we gave me insane supplements, they tried to keep me in the hospital to monitor me for 3 months! No! But I was having multiple seizures daily and it was exhausting. I have to say I am grateful for the seizures I do have, I know there are people out there who are much more severe than I am, who live, or exist, with that being their daily life.
I stopped working because of my seizures, I gave up my drivers license, m life has changed a lot in the past few years due to the changes in my condition. I average half dozen grand mal seizures a year, multiple daily smaller seizures that don't really affect my activity, and depending on my health and stress levels and other things going on with me, I have anywhere from 5 to 50 a week that stop me from what I am doing, but I stay conscious, they aren't too painful, but turn my entire body to jello when it stops. Any thing can cause my seizures. There are guide lines of things to avoid, but some things just can't be avoided. I have had one major seizure on the Harley... a rock hit me in the face, startled me, and I went into a seizure. Troy and I have a system set so he knows if I am not ok. He did amazing and had me off the bike in no time at all! My dog can bark unexpectedly and trigger me. Yesterday before the ride, I stepped in a pothole I didn't see! I don't like that these silly things trigger me, it's like the older I get the more sensitive my triggers are.
I currently take 2 medications for my epilepsy, and I developed some serious anxiety in recent years due to the seizures, so I now take a medication for that as well.
Last night I was sitting out on the front porch, enjoying the quiet and smoking. It had been a long day, and I was just about to head to bed. Suddenly I felt it, that feeling I get when I know its big not something small. I pushed the door open (I don't let the door close tight when I am alone outside), I fought to get in the house before going down. I woke to my wonderful dogs waking me and trying to move me. They tried to get help, but Troy didn't hear them. I was still out of it, but managed to dial the phone ... the one person i knew was still awake in the house. When I didn't respond to him answering the phone, he came running upstairs to help me.
I am very blessed to have people in my life who understand my condition, to have dogs who are not trained service dogs, but know what I need and don't leave my side until I have help.
My doctor once told me I might grow out of this at some point since it is not something I was born with. I dont' see that happening. I have learned to live with my disease, I have taught everyone who enters my life how to care for someone having a seizure. I am lucky it isn't worse, I am lucky to have never been severely injured or caused injury to anyone else.
This is me, I have epilepsy.
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