My sensations started out with feeling goosebumps/tingles on my head. Then it progressed to having a tingling sensation that would run up and down the right side of my body. Within, a couple weeks I started having vision issues in my right eye and right sided jerking of my limbs. This continued to progress in frequency and were getting worse. When I would have these episodes I would also feel "spacey and euphoric" and struggle to speak. I could barely find words, and would slur and stutter really bad. I started having issues with memory and moments of confusion. These episodes became so frequent that a friend encouraged me to go to the ER. My husband agreed this was a good idea. I was admitted immediately. The local hospital was pretty much useless and a LOT of mistakes were made, and my care was sub par. That is story for a different day.
We decided to seek a second opinion from a Neurologist in Indy. Both my Neuro and My GP believed I was having partial seizures. I had a 72 hour video EEG done inpatient a few weeks ago, and 48 hours into my EEG I received my diagnosis. I have Left Temporal Lobe Epilepsy, which is why all my symptoms are right sided and cause speech, reading, memory and writing difficulties. The doctor believes I am having Complex Partial Seizures also known as Focal Impaired - Awareness seizures. The doctor and nurses have said that potentially the anesthesia from December had something to do with my seizures, but there is no way to find out at this point. I will be having an MRI with contrast to check for scar tissue, brain abnormalities, etc so please be praying about this test.
I am so relieved and grateful to have an answer to all my weird symptoms. I am thankful to be able to start medications that has lessened the frequency of my seizures. I went from having them every 2 hours to having about 2-3 a day with my recent increase. I am also thankful I have an Aura (warning sign) before my seizures come so that I can get to a safe place. An Aura for seizures are also known as Simple Partial Seizure or Focal Aware Seizure. I am thankful my seizures have decreased, but I am so ready to not be having these daily. Sometimes I wonder if my "migraines" were really migraines or if they were seizures or linked to seizures all along. Since my seizures started I have not had any migraines. Migraine medicines never worked for me in the past. The only relief I had from my headaches was when I was on seizure meds that were also used to treat migraines. The only time I get headaches now is after my seizure when I am post-itical. I will never truly know, but it does make me wonder.
With that said, what many people don't understand about epilepsy is that seizures look different for everyone. It is not always the Grand Mal (tonic clonic) or Petit mal (absence) seizure that people see or hear about. My seizures in particular I start to feel Euphoric/spacey (its hard to describe), my speech is slurred and I stutter. Then my head turns to the right, my eyes move rapidly and flutter some, my right arm jerks, and I am unable to respond. The seizure lasts about 1.5-2 minutes.
My oldest son who has seizures has a blank stare, and drools. When he comes out of it he talks in slow motion, can't read or write, has lack of appetite, and a bad headache. His seizures are less than 30 seconds and are easy to miss.
We both have epilepsy, but our seizures present differently.
People also don't realize how hard it is to become "seizure free" and many people think the day you take a pill your seizures go away. I wish it was that easy! The process to get to a therapeutic dose is SLOW. Really slow. You have to go up on AEDs (anti-epileptic drugs) slow because of side effects (some can be fatal). There are also some people who have epilepsy where medication doesn't work. They need a VNS or lobectomy where the part of the brain causing the seizures is removed. Some people never become seizure free. Everyone is different.
Being 4 years into the epilepsy journey with our oldest child I often hear, "Wow, he has seizures but he looks and acts so normal." Well, epilepsy is an invisible illness. People (unless they have other health/physical conditions) look "normal." I look normal and healthy until I have a seizure. When I have a seizure I look and feel terrible, and it takes me about 20-30 minutes after to bounce back.
People also don't realize it can change your whole life. It has for me. My whole life has been turned upside down. I am basically like a child again with what I am allowed to do. My independence went out the window. The things most adults take for granted I am not allowed to do right now, and this is hard. I have cried a lot and have really had to press into the Lord through this.
My seizure restrictions/precautions right now are as follows:
-No driving until 6 months SEIZURE FREE
- No swimming or baths without supervision
-No cooking on stove without supervision
- No open flames (grill, bond fire, etc)
-No being left alone in public
-No being at high elevations
Other things people don't think about is you have to be mindful about things you are doing that could potentially pose a risk like using hair styling tools that are hot,using knives to cut food, etc.
God has shown me how much I relied on MY independence. He has also revealed to me how stubborn I am. I am dependent on myself where as I should be dependent on the Lord. God has also revealed to me my identity issues. My identity is NOT in me being a good wife, mother, homeschool mom, homemaker, etc. My identity is NOT epilepsy. My identity is IN HIM. Goodness, this is a hard concept to grasp. I have cried a lot. I am the worst homemaker ever right now. Struggling to cook, clean, homeschool, care for our kids etc... But that does not define me. That is not my identity. And I cannot do it alone. I NEED JESUS. I am a daughter of the one true King and apart from him I can do nothing.
5 I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing.
God has used this trial to humble me and allow my husband to serve me. He has grown my husband so much as a spiritual leader in our house, a husband, and a daddy. Witnessing this has been a true gift. His load is heavy right now. He is/was by me through my seizures, prays over me while I am seizing, reads the Bible with our children and leads biblical discussion, homeschools our children on days I can't, cooks, cleans, cares for the kids, drives me to my appointments, grocery shops, and on top of it all still continues to work from home to provide for our family. Pray for him and that he will endure this trial and continue to press into the Lord.
I have had to be humbled so much and have had to allow our church, friends, family, and Taylor's work serve us. To see the amount of love poured out on our us by our family, friends, church body, and Taylor's work has been just a small glimpse of God's grace and goodness. God has used both believers and non -believers to love us and this has been incredible to see. I pray that God uses our trials to lead people to him. We have had family fly out from AZ to love on us, people sit at my bedside in the hospital, visit us, pray for us and with us, watch our children, clean our house, provide meals, provide gift cards for meals, drive me places when our kids were sick and Taylor had to be home with them, text/call, send cards, allow Taylor to work from home, and the list goes on. We are so overwhelmed by how much all these people have loved our family through this. We are thankful beyond words, and can never repay them. Thank You just does not feel like enough.
My sister, Kursty, took the photo below. I just came out of a seizure in this photo. I look awful in it, but I wanted to show my husband's servant heart. He knelt down beside me from start to finish of my seizures. My husband was by my side with every seizure. One of the most comforting things for me when I come out of my seizures is seeing his face. He truly is living out our wedding vows in sickness and in health. He prays, he comforts me, and has loved and is continuing to love me so well through this. I cannot express how much I love this man. Seeing how God is growing him in this season and how much he has loved/served me through this trial has made my love for him grow 10 fold, which I didn't even know was possible.
My husband will be going back to work this week after working from home the last couple months because my seizures were so frequent. Pray for us as we start to get some "normalcy" back in our lives. Pray for him as he returns to work. Pray for me as I will be alone with the children again. Please continue to just pray for our family through this tough season.
No comments:
Post a Comment