I gotta change my teeth!

Alright.  It’s a few decades too soon in my life to be fussing over fake teeth in a restaurant but that is exactly where I have landed.  Or an acrylic mouthpiece of sorts, that is.  Then there’s the one with metal wires in it.  Aaaargh!  This is all kinda gross, especially with bits o’ lunch in thar!

It’s not your average bear that carries around a bottle of mouthwash in a gallon Ziploc freezer bag with 2 paper towels, a funny little brush and a clam-shell plastic box with air holes in it with a spare mouthpiece in tow.  Gentle Reader, you knew I was not undergoing a normal treatment plan when I signed up for this next phase in my recovery from a serious illness.  After all, who said that specialized dental appliances would stop almost 7 years of daily seizure attacks?

The answer:  no one really.  Persons with Tourettes Syndrome, dystonia, and tics have found relief in addition to persons with severe TMJ or Temporal Mandibular Disorders.  Only one expert mentioned “atypical seizures” and another “movement disorders.”  It was the Lord who led me to  examine my own pattern of symptoms and triggers, led by an observation from an ENT in a recent exam, and extensive research that seemed to indicate that I, too, might benefit from this highly skilled approach within the dentistry profession.  It made sense to me that a Craniomandibular Disorder Specialist would be able to relief pressure on my aching jaw.  If it relieved pressure on cranial nerves in the surrounding tissues as well, then there would be a good chance that many of the episode triggers and the convulsive episodes themselves could go down.  So I interviewed thirteen professionals in the USA  then said, “sign me up!”  My beloved agreed.  Graciously, many wonderful folks helped make it happen.

And I am glad that it did happen.  The convulsive episodes are now EIGHTY PERCENT IMPROVED!!!  Yeah God!  Praise the Lord!  Holy cow!  Cool beans!  Plus every other exclamation of joy I have ever used on this here blog.  Just Julie is going to get well!  I can now lie down and get up from bed most of the time without 30 or more minutes of convulsive episodes.  THIS IS HUGE!  Bonus:  my reactivity to noxious sensory stimuli is also down.  My posture is better.  I am able to eat a few more foods that I have been able to in many, many years without triggering a seizure.  Other symptoms have come and gone yet even the nagging jaw pain is also reduced.  I am looking forward to seeing what will happen over time as the improvements continue . . .

The battle is not yet won, however, as my devices will need adjustments and I’ll possibly need new dental appliances as time goes forward.  This will require significant travel to my Doctor out of State, a leap of faith in the Lord’s provision, and a massive testing of my health status to travel by myself.  Am I up to the challenge?  Absolutely.  We will plan carefully and proceed with caution.  Looks like I am on a good path for recovery at last.  I am humbled and grateful beyond what I can put into words.  Thank you Jesus!

Here are a few pictures from the process from my first week on this new journey.  I look a mess in most of them yet that is because I was very sick going into these appointments.  I had six violent convulsive episodes just trying to do the 5 hours of evaluation and was quite depleted by the time it was over.  Afterwards, my hubby and I were so trashed that we stood in the parking lot late that sunny afternoon and ate every snack and drop of water we had with us!  It took days for me to recover yet somehow I knew that my life was about to change very soon.  Three days later I had another very long appointment to receive my mouth splints.  The changes began within a day and continue three weeks later!  Stay tuned for more good news as this story develops.

Gentle Reader, if you are struggling with serious health issues, I encourage you that the Lord sees your suffering, grieves for you, and promises to be there for you for each and every breath, now and forever.  Call upon His name.  There is “hope beyond” what we can see.  Consider trusting the person of Jesus Christ Who will see you through, carry you this day and always.  I would have never made it this far without Him.  I hope we can share in my joy together someday Gentle Reader.  Our God is good!  JJ

xray, dental, appliances, TMJ, TMD, specialized, dystonia, seizures, atypical, tics, Tourettes, Dr. Ralph Garcia, craniomandibular, disorder, treatment

Assistant Josh took about a dozen x-rays to start the evaluation process.

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Dr. Ralph Garcia takes a detailed history; the smell of acrylics from the lab requires wearing a mask.

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EMG testing of the face and jaw

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Bite evaluation by Dr. Ralph Garcia

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Assistant Julie takes photos with and without the new dental appliances.

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Multiple impressions are taken with soft polymers that triggered episodes when the material was cold. Trying to stay calm to get the proper fitting was challenging.

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Waiting room in Dr. Ralph Garcia’s office! We definitely are not in Indiana!

Sunset Beach, Florida, Tampa Bay, wife, husband, couple, married, sunset, sunrise

A little shy first time out in public wearing the smaller of the two dental appliances so I could have a snack while watching the sun go down on Sunset Beach. So grateful that my Dentist’s office was in sunny Tampa, Florida!

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

 

Smaller Moments Mean More

When the mist on the pond lifts up to the air

The morning hath come and I give witness to life once again.

For I am up through the night, my old haunts hath returned

A way of coping, of living:  just what I gotta do for right now.

So I edit a magazine, make charts of treatments, plan for when I will be well,

Most folks would not notice the shifts ever so small

The wretched episodes continue albeit with shaking, less overall.

I had to gain courage to take more meds/more remedies than ever before

Go rogue to kill the monsters within with faith and every tool from this road.

“Parasites in the brain” sounds pretty scary might you agree?

Yet that is exactly where I have arrived so be that as it may

Find me spacey perchance to dream when restorative sleep comes that way.

The smaller treats of life mean more to me now in my softened state

I get to see them in slow motion and savior their texture, their smell even when awful like glue.

What is before me fills every moment in much more detail

Healing comes small before big so intentionally I walk through most of the day.

Don’t get me wrong, the chores fill more hours than they used to years ago

That ‘s just one part of the plan so is rest and in times of rest I believe answers we have found.

Wyoming, clouds, blog, metaphor, analogy, Chistian, faith, majesty, creation, God, sky, big

One does feel ever so small next to God’s majesty revealed in the big sky over Wyoming . . .

The Boomerang Effect

The wooden angle sitting on the mantle was a souvenir/gift from the Land Down Under.

To toss it into the air and have it return in-flight to you is a skill few master.  We didn’t!

Instead we dust if off because it looks nice:  forming a paradox in design and practice with which I can relate tonight.

Here’s why.

boomerang, wooden, life, metaphor, like, things come back, return to you

A trip to our local hospital began after much preparation and somewhat tense spirit too.

Would the appointments go alright such that I could return home and rest before a party this evening?

I brought with me several “rescue remedies,” food, water, favorite medical supplies, etc.

Having my port flushed last month went reasonably well so this one today should too.

Not.

I’d been battling Small Intestinal Bacterial Overgrowth when some labs indicated liver stuff too.  My Doc was willing to order a test over the phone and both would be today.

The liver/gall bladder/pancreas ultrasound could irritate a tender tummy for awhile.

Worse came a “tic attack” with the realization that there are several tender spots.

Gratefully, recovery came quickly and I was off to the outpatient clinic for the flush.

The nurse completed everything slowly as I’d requested; my preparation was flawless too.

Can you ice your chest wall while having an ultrasound, apply numbing cream before leaving home, and finish your breakfast/morning supplements in the waiting room between appointments running only 8 minutes late too?  Sure you can!

But 8 minutes past the hour was too late.  With everything that went wrong, the process would take OVER SIX HOURS!

The nurses there are saints as they let me sit in that treatment chair forever if needed.

Something about that 1 1/2 inch needle plunging into my port never has bode well with me.  Or was it a slight change in tissue gradient from fluids and a blood thinner going in?

The procedure was completed and I thought I was going to be o.k.  Then I started shaking.

The shaking continued for over THREE HOURS!  Several convulsive spikes joined the mess.

Gratefully my beloved Stevers was able to leave work early, go home, and bring me an emergency dose of steroid medication at the hospital.  He was my hero once again.

Within 15 minutes, the episode stopped.  I lain in that recliner chair in shock for a long while.  I wept some too.

We moved to the lobby where I devoured my last bit o’ snack and began to revive.

Once home, I rallied to help Steve get out the door to the party with gifts, dish-to-pass, yada, yada, yada hoping to join him later.  Another FIVE HOURS LATER, I did.

Last year I was too sick to attend a gathering with these friends from out of town.  My beloved sent me a video back then of the kids opening their gifts.  Bittersweet.

This year I got to see most of the kids for a few minutes and all of the adults.  Twas sweet.

Another victory was being able to visit in a home with a history of mold damage.  Huge!

The First Defense Nasal Screens (See Julie’s Favorites), open windows on a cool Spring evening, and progress in reduced reactivity all appeared to help.  Thank you Lord.

My plan was to stay in the moment, just enjoying the light banter and updates from all.

No matter that no one asked me much about things.  I love them in Christ just the same.

So I live a Boomerang life, moving from wretchedness to sweetness often within hours.

I could brood the day long or keep my pretty tops sitting in a closet like that dusted toy.

Instead if my Lord grants the where-with-all to get back into life, moving ahead, slightly forward,

I will trust in His strength.  I will do it.  I will get there.  And like the boomerang thing, the trip back will cancel the trip out that maybe wasn’t so good.

For we will face trials in this life, those of us who believe in Christ Jesus. The real question remains:

Will we stay on the shelf when the flippin’ craziness is done?  Nope.  Not me.

I will get out and try to have some fun!

Treatment Update

Time for a treatment update and some good news!  Yes, things aren’t as bad.  🙂

My major focus with my health since I started this blog has always been to stop the residual, daily convulsive episodes that have plagued me for over 5 years.  More recently my treatment plan has centered around treating a gut infection that appears to be related.  Some call it Small Intestinal Bacterial Overgrowth (SIBO) and specifically for me it might be due to a clostridia species infection.  Regardless, the gut-brain connection is real and affects neurotransmitters in the brain.  A myriad of neurological issues can result when these chemicals are deficient or out of balance.  Specific medications and nutritional supports directed by a functional medicine doctor in the past nor my genetic coach/naturopathic physician more recently seemed promising but did not help.  Over the past 5 1/2 years, my medical doctor and I have also addressed or ruled out a plethora of other avenues (biotoxin illness, Lyme disease, mercury and lead toxicity, nutritional deficiencies, dental factors, epigenetic expression, pain/structural complications, the endocannibinoid system with CBD oil, psychological issues, ruling out brain or cardiac anomalies, sleep issues, etc.).  But what about the dull ache in my tummy?

SIBO, small, intestinal, bacterial, overgrowth, abdominal, pain, tummy, stomach, appendicitis, clostridia, infection, test, OAT

I did an experiment with a hand held far infrared (FIR) device designed to treat pain.  I used to sell the KenkoWave when I was an Independent Wellness Consultant for a Japanese health technologies company called NIKKEN.  Pain in the right lower quadrant of my abdomen has persisted for over a year.  A comprehensive medical workup yielded no clues so I decided to shine the FIR light onto my tummy.  After just 2 minutes, I had a 2-hour, violent, non-stop convulsive episode that would not respond to any remedy we tried!  I hung on for dear life!  I experimented some more the next couple of days with the same result:  an hour of non-stop episodes after only 60 seconds!  Holy cow!  Maybe the cause is in there somewhere?  By this time I had gotten the results for the THIRD SIBO test coupled with an Organic Acids Test (from Genova Diagnostics and Great Plains Laboratories, respectively) with severe and high markers respectively.  Over the next month, a plan of attack came together.

Somehow treating SIBO last year with an antibiotic (that stays in the gut called Xifaxan) was not enough to solve the problem.  The current round began with about a week of a powerful bio-botanical followed by a nasty antibiotic called Flagyl or Metronidazole.  The drug makes me nauseous so I take another pill for that.  I am not fond of drugs but at this point I will do it if it KILLS THE BEAST!!!  Gratefully, the abdominal pain has already come down.  This leads me to the good news:

  • One-point reduction in the 1-10 pain scale.
  • Less reactivity to noxious stimuli and pain that used to trigger seizure attacks.
  • Shorter episodes that are generally less violent.
  • One less episode most days at my most vulnerable times:  falling asleep or waking up.
  • Clearer thinking for some part of more days.
  • Less stress, fear, sadness, and anxiety.
  • Fewer headaches.
  • Less food sensitivities slightly expanding my food choices.
  • Increased ability to tolerate more supplements prescribed by my doctors per my test results.
  • Ability to work in the garden about once per week.
  • Ability to get to bed before midnight up to 3 nights per week.  (I often stay up late to avoid seizure attacks falling asleep.  Sometimes this has helped in the past.)
  • Movement in a better direction on several laboratory test and scan results.

The changes also appear to have been impacted positively by taking Low Dose Naltrexone.  Persons with autoimmunity diseases and fibromyalgia often use it to reduce a variety of symptoms.  I did not do well on a different dose in the past but I believe the Lord led me to do some research and prompt me to try it again at a lower dose.  This started the list of improvements noted above with the reduction in chronic muscle and joint pain.  Praise the Lord!  Treating the gut infection followed and here we are.

I am encouraged and hope you are as well, Gentle Reader.  Lord willing, I am going to get well!

If you are someone reading this who is struggling with severe illness, please let me know so I may pray for you.  And please don’t give up!  If I can make it through hours per day of head-banging, you can make it through what you are dealing with too.  You are not alone.  Keep trusting in the Lord to see you through each moment, to guide you and comfort you as only He can do so.  He promises to never leave us or forsake us and will always be near if we but call upon our Lord and Savior, Jesus Christ.  He sees us on our bed of sickness.  He hears us.  And one day He will come again in glory for us, taking us to a place where there will be no more suffering or weeping.  He promised!

Thank you for following my journey dear one.  Take care, JJ