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

 

When He is All You Have

My beloved is the best . . . but he is asleep as I bemoan my sorry lot.

He holds me close . . . until I react to some scent on his manly body.

It should have a wonderful effect . . . but it does not anymore, sadly.

Such are the ravages of severe illness . . . the kind that makes everything hay-wired.

If I could explain it to you . . . then it would be from understanding myself,

And I cannot dear friend . . . so woe are my words, this night, once again.

But not forever, all night, or after a little while . . .

For He speaks into my heart song . . .

And makes all kinda nice.

My Jesus understands for he hung on a wooden cross . . .

With nails in his hands and feet, a spear thrust in his side.

I could never endure imagine that kind of pain, even if my head banged all night . . .

Let’s just say my Lord knows suffering so His tears comfort me alright.

Even if this Doc or that hath not have the medication right for me . . .

My beloved says healing will still come and my own fasting indicates so.

I shall do what I gotta do to manage this chaos . . . even if I never leave the table by the window at the café of the health food store

Because I can’t think straight and seizures are pushing up from within:  unsafe to make my way home until I stabilize.

“Cmon my Jesus, drive me home

It’s dark already and you are all that I have tonight.”

And so He did when He was all I had.

Goodnight again.

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 Dog Behind the Curtain

Dimly lit, like the medical equipment stored all around me, I sat in the vinyl seat of that cold wheelchair.  My head was unsupported as I writhed this way and that, right leg then left leg shaking uncontrollably.  Breathing was irregular and challenging as I pushed the air out of my chest to start the cycle again then again, gasping every few intervals.  Just my legs were visible from behind the curtain drawn along my right side and lit from light in the hallway.  A passerby might see my exposed knee bouncing up and down from underneath my torn jeans or maybe not.  Who would expect to see a middle-aged woman seizing just beyond a dark veil anyways?

Most likely a dog in a kennel could be positioned in such a fashion!  Perhaps to put her to sleep, to stow her away out of sight, to deal with her later?  Only a mean caregiver would treat an animal in such a way.  Or perhaps a nurse in the outpatient lab of a local hospital?  The latter was my lot this afternoon.  And hours later I grieved the insensitive treatment that I had received (rather had not received).  She never even responded earlier to my light chatter or attempts at humor as she withdrew 10 vials of blood from my scarred veins.  I had to ask her with strained breaths not to wheel me into the waiting room where others would gawk at my strife.  Holy cow.  Aren’t you paid to care for your patients?  You don’t have to care about me personally but HAVE YOU NO HEART?

Most of them have seen me react many times before to medical procedures that trigger anywhere from a couple of moments of shaking to over 2 hours of convulsive episodes and long after the procedure in their outpatient clinic was completed for infusions, injections, blood draws, and port flushes.  Several times other nurses have had to find coverage for their stations or stay late to take me to the bathroom in a wheelchair while my body writhed, gasping for air like a child with cerebral palsy.  Eventually the episode would resolve minutes after voiding in the toilet.

Once I was in the clinic having an infusion of fluids on my birthday and ended up spending the entire evening in the Emergency Room when the seizure attacks would not stop.  That was 2 1/2 years ago.  Twice they have had to call my husband to come and get me or bring me a medication to try and make it stop.  Dozens of times they have just allowed me to sit in a treatment room recovering, long after they had gone home for the night.  A p.m. shift nurse would come in and check on me every 30-60 minutes as I stared at the walls or the mobile T.V. screen in front of my face.  When I could walk again I would move to the lobby for another interval of time until I was stable enough to go home.  No one even noticed I was there.  By the way, they always play my fav HGTV in the Surgical Waiting lobby dontcha know?

This time the aftermath felt like being banished to the broom closet by an abusive grandmother.  I could not reach the call light and no effort was made to make it possible.  I heard the same phlebotomy nurse chatting lightly with the next patient after me who was there for an EEG.  And again with the lady having a blood test.  I guess they were less “complicated” than me.  They probably didn’t remind said nurse of her own seizure episode many years ago that had disrupted her life for 6 months.  (She had told me about that earlier this year while I was sitting in the clinic recovering from an episode triggered by the pain of the needle stick and extraction.)  Yeah maybe that’s it.  Or did she just want to get back to the break area this afternoon and not be bothered by me anymore?

These episodes and experiences create additional trauma for the person enduring a serious, long-term illness.  You come face-to-face with the reality that people just don’t care as much as they should or get tired of caring, even as professional care-givers.  Take more of their time, their effort, their expertise, their personal comfort than they are willing to give and you will struggle making up the difference.  You are pretty close to being on your own.  It is not your fault yet it is your fault.  Suck it up and figure out a way to get home and not kick the dog when you get there.  Almost 3 hours later I felt as beaten down as I could possibly be as I walked out of that place.

A warm fuzzy friend with big brown eyes and wagging tail greeted me at the door when I got home.  She loves me.  I love our Elle.  So at least for me, I will be caring for our dog in a well-lit room with all the comfort measures she needs within a reasonable time of her letting me know that need.  She may not even need to ask me.  I know what she needs.  I care about her and know how to take care of her.  She will not be shunned to a dark corner behind a curtain as others are walking by.  At least unless she is barking wildly at the UPS or FedEx driver, that is.  Into the laundry room alone you will go . . . but just for a moment or two.  She would bite a chunk out of them if I didn’t!

Well Elle, I must say that I know how you feel. Grrrrrrrrrrrrrr.  JJ

woman with dog, German shepherd, travelling, pet, Nissan Frontier, trip, jump seat

Treatment Update: The Beasts Within

If you follow as many of the various functional medicine forums as I do, you probably have noticed the topic of parasites coming up more often these days.  In fact, there is a free “Parasite Summit” coming up in September.  This topic became a personal one for me within the past month.  Allow me to explain.

A friend and her sister were receiving some complex treatments for serious health issues that they have been battling most of their lives.  Shortly after their focus turned to testing and treatment remedies from outside the United States, my friend suggested I look into parasites as the potential cause of the seizure attacks I have been battling for over 5 years.  I looked into it.  Their provider would not be for me yet the topic launched me into some new research about the time my hubby and I were set to leave on an extended vacation.  Imagine realizing during your first day away from home that you have a new infection that requires attention IMMEDIATELY!  Yeah, well when your bum itches making you crazy insane, ya gotta fix it FAST!

So right before heading out to my River Bear’s kayaking nationals 2 States away, wifey-poo requests hubby-poo stop at a local drug store for an over-the-counter medication.  Thank the Lord he said yes!  My symptoms diminished within hours!  The problem was not a yeast infection but a nasty pinworm/parasite infestation!  How did I get it?  Who knows?!  Pinworms are highly contagious and you can pick them up almost anywhere.  The big shocker was that the seizure attacks virtually disappeared for the next 24 hours after treatment!  I wasn’t expecting that!  No episodes falling asleep or waking up; barely a little tic-zip broke through here or there.  What was going on?

Three weeks have now passed and I have repeated the OTC remedy a couple of times.  I found that clove essential oil with coconut oil provides some topical relief with the added benefit of killing the parasite eggs.  Who knew?  And now my Functional Medicine Doc is testing me a couple of different ways with a couple of different lab tests to see if we can capture all the critters that may be wreaking havoc “down there,” in my body, and brain.  Yes:  in my brain.  Parasites can move to any tissue in the body once they hit the bloodstream or lymphatic system.  My MRI and CT scans have been negative for typical markers that would suggest Central Nervous System involvement, however, allergies to contrast dyes have prevented use of same in diagnosis.  In the end it really doesn’t matter to me if tests show anything or not.  The idea of parasites just makes sense to me.

Simply stated, parasites develop a symbiotic relationship with their human “host.”  They can actually help the body by balancing blood sugars or harboring heavy metals/toxic chemicals (that would be toxic if left to circulate freely).  Parasites are not a good thingy though.  They can also harbor infectious elements (some have suggested Lyme disease bacteria) setting up resistance to treatment, to eradicating the infections.  And I thought it was the cysts and biofilms that were the biggest issues in treatment resistance!  As they continue to live in our bodies, they drain nutrition and mineral resources in addition to creating a host of negative symptoms that mimic a wide range of diseases.  Gut dysbiosis is a big example to which I can relate:  my Doc wonders if parasites are causing my belly pain which has not changed much after two different treatment protocols for Small Intestinal Bacterial Overgrowth.  He says that worms/flukes/bugs can favor the right lower quadrant and where the trouble lies for me.

But the Palo Alto Toxoplasmosis Serology Lab testing was negative.  Pinworms don’t typically cause neurological problems.  Stool testing hasn’t found anything in the past even when I put a WORM in the sample cup!  Oy vey!  Maybe these two new tests will yield something useful?  In the meantime, I am taking lots of anti-parasitic herbal formulas with a concoction of binders with gratitude that neither trigger seizure episodes as they have in the past.  Lord willing, I am going to get well!  Indeed there are parts of days where I feel some positive changes for the better as a result of these additions to my care.

If you have followed this blog for awhile then you know I am always looking for answers, for hope.  I do hope to get well and am working every day towards that goal.  Overriding everything however is this guiding principle:  that my true hope is in my Lord and Savior Jesus Christ who will one day make me whole, here with you or when we meet in heaven.  Nothing will change that.  He is gracious and good to me even on my worst of days.  I am so humbled to feel His presence on my bed of sickness as well as the moments where I can have a little fun here and there.  Speaking of fun, did I tell you about white water rafting 2 weeks ago?  Yeah, you heard me!

Stay tuned Gentle Reader.  Pictures and more stories to follow that will blow your socks off . . . or at least get them a little cold and wet!  The Snake River is about 60 degrees even in August dontcha know!  More on that one next time.  Gotta take some stuff and get to bed.

Take care, JJ

white water rafting, Snake River, white water, rapids, Class II, Class III, raft,trip, Mad River, living, in the moment, one day at a time, break, chronic illness, fun

Snake River, Jackson Hole, Wyoming