My story is simple and short but lifelong. I started having disfigurement in my face and no one knew what it was. I saw several neurologists and finally it diabetic seizures. I was put on late adult seizure meds for almost 1.5years. I got terribly worse. I went to John Hopkins in Baltimore MD, and I was there for 1 hours. The doctor checked my neuro system and then he said, “you have hemiplegic migraines”. He wrote up info and said Atlanta doctors should know how to treat this rare migraine. It is not pretty if you look it up. CDC: rare diseases
Came home and went to a migraine specialist, he was doing testing on this migraine, and I did not know he was not using solumedrol around my head. He hit my spinal below around C1-C2 with this test medication and I got dysfunctional neurology. I look like I had palsy and my right side of my body moved without me. I could not see white light out of my right eye. My brain was fuzzy. My sisters cried and some could not see me. It was so bad. My best friend, Linda, was overwhelmed with tears and distress. Main objective was to get me to Shepherd Center Hospital on Peachtree St., Atlanta, GA.
I met several doctors due to the weird happening Dr. Darryl L Kaelin stepped up to the plate to help me. I was a great challenge. I went through Pathways at Shepherd Center in Atlanta, GA; I cried like a baby and had no clue why I could not t do the things I used to do. Lost my job, my husband became my provider. Dr. Darryl L Kaelin finally put a mixture of drugs and off I went to life somewhat. Doing the best, I could. He taught me about the brain and about neuroplasticity. My psychologist was appalled and sent me to Emory for a cognitive test. It lasted 2 days. She immediately requested disability and told me to make a will with the health care advisor to plan decisions if I went into a coma. I stayed in shock I believe for 3 years. My husband started having to take me to all his job sites and I started with the help of others by hiring people who would learn how to help me be as independent as possible when he was not around.
Dr. Darryl L. Kaelin saved my life and he moved to UofL Healthcare Frazier Rehabilitation Institute and that is where I go now in Louisville, KY for treatment and follow ups. I actually moved here to be at this institute so I can have a better life than the treatments I was getting in Atlanta, GA
I thought everything was over, but it was not; my trigeminal nerve on the right side where I had the migraine was beginning to be very painful in 2016. The pain increased till suicide seemed to be the answer; I believe in God, and it did not happen. After being rejected by Emory in my own hometown and Mayo Clinic; I kept searching if I wanted to live a somewhat normal life. Brain Expert, Dr Robinson in Atlanta GA looked at my film on a bad day and said “I can try something and let’s hope it works”. I was immediately signed up for Gamma Knife to get rid of the right side Trigeminal Neuralgia. It Worked!
Now, left hemisphere damage and right hemisphere damage has gone through neuroplasticity. I have other neurological issues, and age-related issues. No matter how many years, this is a hard life not having the brain you once had; life goes on. You stay optimistic and you have failures, it is your life and make the best of it.
Years later, I started getting right facial pain. Oh, how horrible that pain can be and the hemiplegic migraine with facial pain the treatment was not lasting long the full 3 months. Now, I am trying something else that is also giving me some relief. Hope it works for a few years or more. Live, Laugh and Love Deb Krupp