Tuesday, March 29, 2016
Thursday, March 17, 2016
Here is a short video showing how I do my eye exercises and a brief description of my dystonia using functional neurology.
Sunday, March 13, 2016
I had read several articles on acupuncture and Chinese herbs helping to manage pain and tremors with dystonia and gave it a go yesterday.
I was very nervous and anxious and found it hard to relax. I actually felt a bit nauseous before the procedure and should have eaten more that morning. I was told to lay face down on a massage table and my head, of course, kept tremoring and I could not get comfortable. My arms kept trying to find a comfortable spot. She was very kind and patient with all of my movements. I kept trying to stay with my breath...deep, calming breaths. She used the needles at the top of my head, behind my ears and neck, shoulders, left ribs, lower back and ankles and feet. It was not painful at all and I felt tingling and after about a half and hour I could feel my right shoulder begin to relax. She also made me a special blend of herbs in powder form to drink as a tea for the next five days. After we left I began to feel very sick and ended up going home and vomiting for about an hour and felt like someone had given me a horse tranquilizer and cocaine. My body felt exhausted and the nausea was still around this morning. I called her and she said it is the release of all the toxins in my body and the acupuncture sometimes makes symptoms worse after the first time for a few days. I'm drinking the tea now- I'll keep you posted.
Update: Tues 03/15...Now I am not sure if I had the flu or it was the acupuncture. I am still feeling fatigued and my appetite is low. I'll try it again in the next few weeks and let you know.
Saturday, March 12, 2016
Thursday, March 10, 2016
Sunday, March 6, 2016
Friday, March 4, 2016
Wednesday, March 2, 2016
After calling off of work for 3 days I had to take a medical leave of absence. I went back to my primary care doctor and they referred me to a neurosurgeon who saw me the next day (usually it takes 4 months to see this particular doctor). I could tell by the way he and his intern walked me out the door holding my hand that I was not in for good news. He then referred me to a neurologist who specializes in movement disorders who saw me the next day.
The movement disorder specialist told me that I have a rare brain disorder called Cervical Dystonia. He told me that my treatment options involved a series of Botox injections into my neck that would paralyze the muscles causing the pain and pulling that I could not control . He also prescribed a muscle relaxant called baclofen and an anti anxiety medication called klonopin. I was also given a prescription for vicodin for pain but that made me very sick and I am NOT able to take any opiates or pain medication. They all make me so sick it just adds to the pain. He also told me that there is no cure for this disease and that as a last resort they do a procedure called Deep Brain Stimulation which involves a surgically implanted, battery-operated medical device called a neurostimulator—similar to a heart pacemaker and approximately the size of a stopwatch—to deliver electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and dystonia symptoms. Fun.
Let me describe how dystonia feels. You feel like you may have been poisoned and then you feel nauseous and sometimes dizzy. Your muscles are so tense and sore and they will not relax. Then you start to feel panicky because you do not know why this is happening. Your mind is sharp yet you try to control your body movements and it does not work. The pain is excruciating. It feels like someone is pulling the back of your head by the hair and your muscles have turned into coiling serpents under your skin. You feel possessed. You cry A LOT. The part of the brain that is damaged when you have Meige/Dystonia is the Basal Ganglia and it controls muscle movement and emotions. It sucks. Dystonia just plain sucks.