Monday, September 5, 2016

Update...

So it's been a while since I posted an update on how I am feeling and my progress.

Here we go...


Since starting my treatment with Dr. Kukurin the last week of June I have made tremendous progress as far as my head's range of motion. I have had a few days where the pain on a scale of one to ten was around a 7 but never below that number. Most days the pain averages about an 8. My dystonia is severe and I know that it will take a lot of work and physical and mental strength to get through this. I am hopeful that this treatment will work and keep progressing, but I have many days where I doubt that it will work at all. It is hard to feel hope when you are in so much pain. Thankfully Dr. K. is good about taking videos and tracking my progress. On days when I feel really awful I watch the videos and they give me hope. Things are changing and it is going to take time. I just hate not knowing how long....


I do many at-home therapies including targeting with lasers to activate my left brain and decoupling exercises. He also incorporated the "fencing reflex" into my exercises and that has given me the most success (in my opinion) as far as turning my head to the left again.


I keep a daily journal of my exercises, how I am feeling and the pain scales. Since we are now creating more movement, I am now using muscles that have been stuck for almost two years and it is excruciating. I take Baclofen 2-3 times a day and one klonopin at night. Sometimes I take 600 mg ibuprofen. I tried making a turmeric paste and other natural pain relievers. Right now not much is helping except my cervical ice pack. I am icing my neck all day long.

Sleep has been extremely difficult due to the tremors and pain. I feel worse when I lay down. I occasionally take 1/2 ambien but it is a fickle drug for me. Some nights it works great and others I am up 2-3 times. My New Neurologist had me try carbidoba levodopa and all that did was make me feel nauseated and disoriented. I gave it 5 weeks. She also gave me trazodone for sleep and it does not work for me. It makes me feel drugged and totally f'd-up but not sleepy. I am considering trying Botox one more time. I am so desperate for relief.

 I recently contacted my insurance company to seek mental health assistance to help me cope with my diagnosis and find ways to release some of my anger and emotional distress. It is a vicious cycle....I feel the pain, I tense up.  I tense up and get more pain. Then I start to freak out and drive everyone nuts-mostly myself.  This disease consumes you.  On most days it swallows you up and makes you blind with pain. I have called a suicide hotline twice to help me get through the days where the pain was so bad I wanted it to end. I do NOT want to die-I just want the pain to end. Thank goodness for my little boy-he keeps me fighting. I am sure my family and friends need a break from this saga as well, so seeking a professional is long overdue. 


There is so much more to share but I am exhausted and sitting hurts. Typing hurts. My left arm is tingling and my left hand is going numb. It is time to stop. For now...