Something old, something new

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?

vagus nerve, vagal nerve seizures, vagal nerve stimulation, non-epileptic seizures, psychogenic seizures

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

 

Treatment Update and New Learning

So they say that the brain is relatively “plastic” meaning that new associations can form within it over time, over the synapses between cells, even structures.  This can make a critical difference in the long term outcome of traumatic brain injury, seizures, stroke, toxicity, and disease processes affecting our central nervous system.  Thank goodness.  I might just make it out of this neurological illness with something good?

New associations can form in the brain via various mechanisms:  learning a new skill, subject of study, or behavior (such as breaking a habit and replacing it with another).  Utilizing memory can draw together old and new centers of the brain where information is stored.  Sensory stimulation from the five senses and movement also have an impact as each stimulates different centers in brain stem and cerebral cortex.  Movement increases blood flow to virtually all of the tissues of the body including the brain.  I understand that all of these activities but new learning in particular, can help slow down the onset of age-related dementia.  Never stop learning folks . . .

My own ability to learn new skills appears to be improving.  I have volunteered to help a  friend finish her website and continue to be the Assistant Editor of the quarterly Canoe News magazine of the United States Canoe Association.  Both require learning how to use software programs I had only heard of in the past; never used them in my occupational therapy career.  Cool beans.  Thank you Lord for these projects and my ability to tackle them!  When faced with a problem to solve, my attitude of late has been more of, “I’ll figure it out,” than anything else.  I like it!

And in general, the seizure attack episodes that I have suffered daily for 5 years are trending downward again.  Thank you Lord again!  My Doctors have transitioned my care from anti-bacterial (Lyme) to anti-viral medications and supplements.  We are re-testing several areas this month as well.  The biggest help overall appears to be the addition of 100% THC-free hemp oil.  This is a special kind of CBD oil made from industrial hemp NOT medical marijuana.  All of the cannabinoids except CBD are removed; not even the legal limit of .3% THC remains that is present in other CBD oil products.  (I wrote more about this here.)  It’s the only independently lab tested product of its kind that I could find in the United States.  Note that the CBD oil I am taking is  LEGAL in all 50 States!  I know.  I have been researching this issue for 4 years and have tried other CBD products available in my State.

My activity level has gone up some with pain coming down enough such that I can:  work on the 2 projects noted above, walk the dog 3 times per week, and leave the house for one non-medical activity per week.  So far, that is.  Looks like I might have had 2 outings in the past 6 days of this past week already!  I have started to be able to do my physical therapy exercises.  Thank you Jesus!  And when I got sidelined last night with noxious symptoms in the middle of the night, at least I had strategies to get me through a rough headache and morning today.  I’ve got tools to use now that actually help my symptoms.  This is a big deal to me.

Lord willing, Monday will bring an important imaging test in a large city about 3 1/2 hours from home by car.  My beloved hubby is taking me.  The test is a special MRI scan called an “MRI with NeuroQuant processing.”  The NeuroQuant software takes volumetric measurements of various brain structures and compares them to a normal brain.  Experts have identified parameters of significance in both the Lyme and Mold illness that provide diagnostic information and help in determining the severity of these respective illnesses.  This test is also used in traumatic brain injury, stroke, Parkinson’s, and Multiple Sclerosis care and more.  I am pursuing it due to headaches virtually every day in addition to the remaining convulsive episodes.  Several EEG and sleep studies have shown no negative findings.  My regular brain MRI a couple of years ago was normal.  Maybe the NeuroQuant will help rule out other causative factors?

So did ya learn anything new today Gentle Reader?  I sure did.  I learned that there still is a someone-or-two who cares about me and what I have to say.  Thank you for that dear one.

You rock!  JJ