Soon I will come up on the seven year anniversary of when serious illness entered my life. No, I won’t be kayaking in the Cedarville Reservoir to commemorate October 11, 2011! That’s the day I contracted viral hepatitis and never really recovered. It’s been a complicated journey since then, trying to get well.
Soon I will meet with my Doctor and see what he thinks about a new treatment with which I have been experimenting. Recently I wrote about how devastated I was when some vascular studies revealed no new information about why the convulsive episodes continue. Over the next week I dwelt at the foot of the Cross of my Savior and He showed me some things I had not considered before: many of the triggers of episodes have had something to do with my neck. The CT Angiogram helped me examine this issue more closely and led me back to a comment by an ENT specialist back in January. He said I should look into vagal nerve seizures and so I did. That process led me to pursue specialized dental appliances that helped take pressure off of most of the cranial nerves involved in episodes and they started coming down within a day or two. Adjustments in the appliances helped further then the improvements waxed and waned as time went on. It is now 7 months later. They are a pain to wear and look weird. What else could be going on?
Soon I may have more of an answer to that question as I experiment with specific stimulation of one of the 12 cranial nerves: the vagus nerve as it travels through my neck area. A person has to be careful with this as it lies in close proximity, distal to the carotid arteries, thyroid, and parathyroid glands in the front of the neck. Indeed vagal nerve seizures is a part of some forms of epileptic seizures and is treated with a surgically implanted vagal nerve stimulator. A person has to have a diagnosis of intractable epilepsy or migraine headaches with treatment failures from trials of two types of medications before it is deemed medically feasible. For me, no epileptiform activity was ever detected in EEG sleep studies even though numerous convulsive episodes occurred during two different studies in two different clinics. I now wonder if they should have been watching the heart monitor not the EEG monitor when the episodes spiked. Changes in heart rate and other vitals can accompany a seizure. I have experienced this. Were these factors recorded but missed in my clinical studies?
Hopefully soon my experimentation with two different vibrating wands will stop these wretched seizure attacks altogether. I found 2 very simple devices that I could carry with me, experimented until I figured out which ones work better at a given time of day. The high-frequency wand makes me sleepy so I use it at night. The lower frequency wand is more effective during the daytime should I feel the symptoms of a pre-tic episode. How cool is this? Yes, I still need to avoid certain head-and-neck positions due to other cervical spine issues, get back into either chiropractic care or physical therapy, and review everything with my primary Doctor. I will continue wearing my specialized dental appliances. In the meantime, it sure is nice having a better option than Prednisone (which I can only take in emergency situations!) to bring real relief for daily involuntary head-banging!
Will letcha know really soon, Gentle Reader if this all leads to something GOOD. In the meantime, I am encouraged. And grateful. Thank you Lord, for bringing hope beyond what I can see once again. JJ