The beat goes on

Looking for some meaning in this holding pattern of life

I find only the dings along the bottom of the barrel, cold and damp.

Went on a little adventure with my love only to land in a world of hurt

The ghastly symptoms embarrass me in front of a friend not yet known.

I really try to find a way out of this hell, I really do

With answers only to wait, check this, measure that as it is not time yet.

If only I had the eternal eyes of my Savior perhaps the angst would be less

The long naps on a sunny day awakened with distress of illness would be no bother.

“When?” would be replaced with patience, “why?” with simple faith and trust,

Pain with appreciation of endurance granted only by my dearest Lord.

Hold me now as it is too late for my strength to carry me any more

As this heart ticks off more moments, let me know that with You I will go on . . .

 

The next big thing

It’s a new year so perhaps it is appropriate that the Lord has shown me some new hope for overcoming the serious illness that I have been battling for the last 6 years.  Prepare for another brain dump!  Are you ready?

cranial nerves, TMJ, vasovagal, seizures, epilepsy, non-epileptic, convulsions, vagal, nerve

An Ears, Nose, and Throat Doctor (ENT) suggested to me that I might look into vagus nerve issues.  He said it might be related to why I had a seizure attack in his office after he put a long-handled mirror down my throat during his examination.  As soon as I stabilized 20 minutes later, I pulled out my smart phone and Googled what I would learn are called “vasovagal seizures.”  Holy cow!  There is a lot written about this topic!

The vagus nerve originates in the medulla oblongata of the brain stem and extends through the neck to the heart, stomach and other organs of the body.  It comprises the “parasympathetic nervous system” which is the opposite of the body’s “fight or flight” response of the sympathetic nervous system.  A vagal nerve stimulator (VNS) can be inserted into the body with an electrode wrapped around a branch of the left vagus nerve in the neck (not the right as that one travels directly to the heart).  The VNS sends tiny, intermittent electrical impulses to the vagus nerve to calm the heart, prevent fainting for persons dealing with syncopal episodes, depression, and even seizures.  A person with vasovagal seizures can place a magnet over the VNS when he or she senses an “aura” or sense of impending doom that an episode is imminent.  (I understand this phemomenon well.) The electrical stimulation, once correctly calibrated for the person, can help prevent this specific type of seizure.  No medication is needed although some patients with vagus nerve dysfunction and fainting spells take beta blockers (or herbal alternatives) to help manage the related cardiac symptoms.  (If accurate and not affected by the shaking, my blood pressure dropped significantly during a severe episode recently.)

Forgive me if I don’t have this exactly right as I am new to this topic!  What fascinates me is that persons with vasovagal seizures can present with some of the same symptoms and triggers that I have experienced:  ringing in the ears plus convulsive episodes after  noxious sensory stimuli and needlesticks.  Gratefully, I do not have fainting episodes; I have suddenly fallen asleep when the episodes occur in bed.   But wait, there’s more!  Because there are at least 2 branches of the upper vagus nerve that run near the jaw line, some dentists have suggested that the vagus nerve plus the trigeminal and other cranial nerves (as shown above) may be affected by dysfunction of the temporal mandibular joint (TMJ).  I have suffered TMJ pain for years after a double whiplash injury when in an auto accident in 1996.  I never was able to work full time thereafter due to my injuries.

The upper branch of the left and right vagus nerve runs along the face to end in a couple of points on each ear, respectively.  It seems plausible to me that I could use touch pressure, cold stimulation or even medical grade magnets to stimulate these points.  (Google vagus nerve stimulation for more ideas.)  It also seems plausible to me that any tight muscles or fascia of the face could press on these nerves contributing to distraction of the TMJ joint or impairing the function of the nerves affected.  “Occulsion” of the TMJ (which also includes disc displacement) can lead to a host of symptoms which I have experienced including headaches, pain, clicking sounds, swallowing and possibly sinus issues.

Wouldn’t you know but there are dental professionals who specialize in TMJ Disorders who have had success using special dental positioning appliances in reducing the tic-like symptoms of persons with movement disorders (e.g. Parkinson’s or Tourettes Syndrome).  They use ALF and Geld devices for the upper and lower jaws.  Holy cow again!  Who knew that a specially crafted mouth splint, designed to raise, displace, or widen the palette and jaw bones of the TMJ, could affect the brain so profoundly?

Well I kinda did.  I heard about this a few years ago related to TMJ and have been following one prominent dentist in this area of specialty for a couple of years.  My medical doctor/chiropractor referred me to a TMJ specialist out of town a few years ago.  For less money, my husband and I decided to have our local dentist fabricate a TMJ splint for me; later the dentist fabricated an anti-snoring mouth guard.  Both could have helped different aspects of this serious illness but they did not.  I was unable to tolerate wearing either appliance and would choke on them when the seizure attacks came at night.  I gave up.  So sad.  Years passed and nearly a thousand more violent convulsive episodes.

Did I tell you that another trigger was to simply eat food?  I thought it was a reaction to the food that I was eating, paid for allergy-type testing and retesting, changed my diet many times to try and end the episodes that often started at the kitchen table.  Many times my hubby had to carry me to the sectional or bed when I could not walk on my own or had  collapsed.  Whoa.  What if it was the very action of chewing that was triggering them?

The vagus nerve and the TMJ issues appear to me to be related.  The video above gives a profound example of how changing the positioning of the jaw can affect neurological symptoms of tics.  This is big news.  What I will do with this information is still unclear.  I favor starting with low-tech mouth appliances before the vagal nerve stimulator surgery, if indicated.  I have begun researching the literature, interviewing Dentists and Oral Surgeons in this field, joined a few discussion groups online, prayed, and talked things over with Steve.  For the VNS I would need to find yet another neurologist to see me.  Proceeding with formal assessments and treatment for the dental appliance will require regular travel to offices out-of-State and thousands of dollars in expenses.  Very likely, insurance will not cover most of the costs; not sure aboit the VNS.  But what if it is a functional, positional issue causing the daily episodes? A VNS would moss the root cause.  Something good seems possible.  I have hope again!

There is much to consider.  In the meantime, there are simple TMJ tests and exercises in addition to vagus nerve stimulation techniques that I found online that I have already started experimenting with at home.  The results are promising.  Yeah God for YouTube videos!  I am so grateful to have resources when I am searching for them in the middle of the night . . . with things to try when the seizure attacks are worse.

Yeah, I am up again late at night once again.  By the way, the parasite treatments appear to have helped some with the exception of getting blindsided by significant triggers (like having a blood draw about 2 weeks ago that triggered 4 hours of non-stop seizures, resulting in another trip to the emergency room and sigmificant increase in head and neck pain, tinnitus, ugh!).  One expert has suggested that improving the alignment of the facial/cranial/neck structures can help overall head and neck drainage; this could include everything from sinus mucous to lymph, blood flow, and cerebral spinal fluid.  Better drainage would surely help my detox protocols work better that and perhaps prevent or resolve the multiple infections I battle that may be affecting my brain, my central nervous system.

We have really got to figure this out folks.  Lord, is your hand in this next big thing for me or not-so-much?  I am hanging on . . . hanging on to you.  Will you graciously lead Steve and me as to whether or not we should proceed?  We need you now sweet Jesus.

I’ll let you know, Gentle Reader, the answer as it unfolds.  I know that my Lord will lead us!

JJ

 

The best in paddling

As the wife of a kayak, now canoe racer, I have been spoiled with the best paddling gear a gal could love.  Or want.  And it makes her look more “abled” than she could be.  Actually, having carbon fiber Epic kayak and outrigger paddles with boats made of kevlar have made it easier for my non-athletic frame to pull those beauties through the water.  The overall effect has been to be cool at last!

Want to see them?  My River Bear is having a Happy New Year Sale at his company:  River Bear Racing.  Check it out and drool a bit or contact me for a test drive when you are here in the Midwest.  There’s even some paddling life jackets to complete your ensemble!

Dunes Harbor, Sleeping Bear Dunes, lighthouse, just julie writes, Julie Horney

The Stellar S16S surf ski paddles like a breeze on the clear waters of Lake Michigan. Get your own at: River Bear Racing

What could be the cause?

For how many things can you test, research, treat, and repeat

Before you get to your end with hands empty again and again?

Like a parasite sucking the life out of you while it hides in waiting

Adding to your pain, lighting the match of your symptoms once and again.

Don’t expect the ones paid to know to really know anything at all my dear,

Outside of their textbooks even if they read them, even if they look at you at all.

Because if you don’t fit the pattern you really may have no where you can go

And temptation will come to do things only animals might do to get by.

Sounds sick but there is someone out there who understands this bad rap

And sits with you facing that brick wall with pieces of dreams that no longer fit.

You can’t make this stuff up yet this is your reality.  How cruel it really is.

………….

The One who really knows

Has that name you cannot forget

He hung in front of scoffers

Hands nailed, sharp spear in His side.

He chose to hang from that cross

To bear the consequence of this world

The effects of evil you endure

That just wasn’t supposed to be.

He still weeps for your pain

Knows it all very well

Stays near, hear Him speak

Words of comfort if you but dwell.

Never let Him go little broken one

It will help you endure

One day all will be well

That promise is ’cause He loves . . .

And on that you can rest.

Yes, it is now time to go to bed.

………….

Don’t fear the seizures that may come

They have made you braver than anyone

Who else could face the tempest each night

Yet rest in his den without trust in something more?

How ever have you come this far

When so many would have died two thousand times

If you were not given supernatural strength

He has ordained for the days to come?

Only your Lord knows the day and time

When all will be made well, be made right

Until then you hang in there my precious child

I love you and will rock those shakes in my loving arms.

Think on that when the tears surely come

Knowing all are held in my two hands

I count them, bring them my righteousness

In a way only I now understand.

You must trust me albeit a bit blind

Have I not restored from the locusts before?

Have I not given you the love of your life

The dreams of your heart in your home?

So with confidence that comes from Me

Go forth into the night as it becomes day

Knowing My time is not of this world

And your gifts don’t come wrapped as for others.

You will be rewarded for trials

I have promised and this you know

Just trust in your Lord, Jesus Christ

For His love, His goodness will be evermore.

…………

And so I did.  My title was the wrong question.  My answer is Jesus Christ.

JJ

couple at sunset, couple by the shore, kissing, sunrise, couple at sunrise, Christian marriage, Christian couple

They hurt me so

I cannot tell you but tell you I shall

How cruelty in the hands of “the help”

Abuses the soul.

The tempest beast led me astray

Withheld needed care

And broke so many rules.

My grief is unspeakable

Disbelief has become real

My shell barely holds on.

The effect is daily pain

Medications to survive

Get through the moment here now.

What action to take

Befuddles my mind

As advice seems weak to me.

So I do a bit then wait

Wondering if that is all

Curled in my Savior’s lap . . .

I just cry some more.