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

 

 

 

A marker of insanity

Look closely at this picture:

sheep, chair, hoof, trimming, animal, vet, husbandry, parasite, treatment

Did you know that you can purchase a heavy duty chair for a sheep?  Crazy stuff!  I cracked up when I saw it in the midst of researching online sources for parasite treatments.  This chair is for trimming the hooves of sheep.  I THINK I NEED ONE TOO!!!

“A sheep or a heavy duty chair?” you ask.  Who knows, maybe both!  Because that is just how insane things have gotten over here, trying to diagnose and treat a serious illness without a clear path to follow.  The latest example is trying to treat for parasites.  They harbor metals and toxins so it makes sense that my treatment would be so complicated, especially when markers for metals and toxins have been high for me at some point.  But try and define which parasite you have after numerous tests are inconclusive, you end up going down a dark hole of guessing or worse yet relying on alternative energy testing — neither one of which are appealing to me.

But I have seen parasites over here.  The worms you can see; the microscopic protozoa you cannot.  Over the past few months I have been treating them with a variety of herbals or limited doses of medications.  Some symptoms got better and my worst symptoms got worse for a day or two.  So what is it:  protozoans or worms?  Both?  Where would I have picked them up anyways?  Why have I gotten temporary relief with some symptoms and violent convulsive episodes and headaches with others?  The answers don’t come easily yet it appears that it is because I am on the right track after all.  Inflammation and brain swelling follows die off of parasites if they are in your brain, your central nervous system.  Many helminths can cause seizures.  Fortunately/unfortunately, brain scans have not found any cysts.  The only remaining diagnostic tools are more obscure labs or a lumbar puncture to test my cerebral spinal fluid.  I had spinal injections many years ago.  I don’t want a lumbar puncture!

So here’s how insane things have gotten lately:

  • If my Doctor’s office cannot find the right labs to process additional parasite testing then I am responsible to search for them nationwide and provide the office with all of the information, facilitate the referrals, and obtain the test procedures.  By the way, experience tells me that very likely I will have to follow up on getting the results to the Doctor’s office, confirming receipt as well figuring out how to fit reviewing them into my appointments already limited by cancellations 25% of the time by their office.  New appointments are 5 months from now . . .
  • The trial-n-error of a variety of herbal, over-the-counter, and drug options for treating parasites has left me having to manage virtually every aspect of this potential cause of illness.  Research continues to dominate my waking hours, trying to find the best review articles and treatment strategies for those that may apply to my care.  Thankfully my Doctor, after much resistance and lectures on his liability  concerns, will review this literature and make recommendations in light of it.  The newest step in me having to find appropriate laboratories seems too much to bear.  I guess I have no choice but to proceed and hope I find the right information online somewhere, Lord willing.  More time and dozens of more seizure attacks will follow daily in the interim.  At least Ibuprofen is helping now with the headaches!
  • The billing of two of three past treatment situations are my “special project” each week.  Looks like I just got the first one resolved from an ambulance trip in January so hey, let’s add two more, eh?  Getting pre-auth for a special injection and getting reimbursement for a specialized test in July remain.  No problem.  This is why we go through so many reams of paper around here dontcha know?  Printing out the documentation for tracking everything, following up, yada, yada, yada fills my days.  Just doin’ my job, ma’am!
  • My latest dilemma is the most crazy:  if I am convinced that parasite treatments are needed but I am unable to obtain the strongest ones via a traditional medical route then others in my situation have ordered medications from veterinary or international sources.  Ordering meds online scares the heck out of me!  Members of certain Facebook groups claim both are very safe options and have worked well for them when their Doctors poo-pooed their requests for treatment.  I just dunno about this . . .Systemic parasitic infections are often a clinical diagnosis just like chronic Lyme.  The latter seems to be more acceptable in illness-focused groups than the former.  But the evidence is growing (pun intended!) that one of the strategies opportunistic infections use to stay alive inside of you is to hide in larger parasitic organisms.  The body may even harbor parasites to keep these smaller organisms from killing us.  And the research confirms that parasites harbor toxic metals in possibly yet another symbiotic, protective mechanism. At some point you have to address both the chicken-and-the-egg in these toxic relationships.  Kill the parasites and out comes other toxins both organic and inorganic.  Talk about a “herx!”  At least now I have an Ultra Binder to minimize the herxheimer reaction.
  • Very simply, the only rescue remedy I have remaining to stop the worst of the convulsive episodes is a high dose of steroids.  Nothing else helps for more than a few minutes.  The problem with this is that my Doctor won’t prescribe but a few doses because of osteoporosis (that likely came from antibiotic treatment for chronic Lyme last year).  I understand his thinking.  However, he doubted me when I told him that I only used it sparingly even though I showed him the bottle with remaining doses still in the bottle!  He decided that it would be appropriate to use steroids when the convulsive episodes exceed 7 hours.  SEVEN HOURS!  That was what I did a week ago Saturday.  It was hell!  If I did not have those remaining few pills left, I would have landed in the Emergency Room again.  Holy cow.  Holy sheep?  What an insane treatment plan.
  • So I continue to stay up very late at night most nights because sometimes it lessens the convulsive episodes.  Often there are breakthrough spikes while I sit here with you and while my beloved sleeps soundly just beyond the door without me . . .

What an insane treatment plan indeed.  So gather ’round anyone lost in the sea of forgotten medical mania and serve up a tincture of sheep elixir for a sorry night of seizing under the moon.   Or maybe not.  I have no idea at this point.  But I gotta tell ya that wrapping up in a nice wool blanket on a bark-a-lounger sounds pretty good right now.  Move over Sheepy.  This gal’s gonna need to rest more than you do right now . . .

JJsheep, flower, bug-eyed, big eyes, lamb

 

 

I got to Walmart today

Days where I just exist

Give way to tears

More often than not

Everyday now.

Waiting no longer suits me

Although it is my garment

Worn through hopes dashed

Threadbare to no end.

I study like a school girl

Not sure where the letters lead

Thinking this is “it”

And it is not.

Surely it is darkest

Before the break of day

That is my hope I guess

And my Lord too.

So little do I do

As the grass grows tall

Alone too much too

At least I got to Walmart today!

Walmart, shower, Target, Meme, pajamas, old man, glasses

Treatment Update and Anniversary

Six years ago tonight began a journey that has tested me in every way possible; brought me closer to my Lord and Savior, Jesus Christ, than ever before; deepened my love and gratitude for my beloved Steve; and helped me to grasp the incredible resilience of the human body/human spirit.  Thank you Lord for your sustaining grace through it all!

Rather than go into the details, I will simply refer you, Gentle Reader, to my story here.  Briefly, I got deathly sick with viral hepatitis after kayaking in a local reservoir and never fully recovered.  Seizure attack episodes began on a daily basis within a couple of months and have yet to resolve.  This serious illness has had many names, required extensive treatments at considerable expense, and rendered me unable to work in my profession of occupational therapy.  I miss working.  The social isolation, sense of loss, grief, and various disabilities have changed my daily life considerably.  Without my faith in Christ I would not have made it this far.  I do have hope for a better tomorrow which brings me to my quarterly treatment update as follows:

Recent lab tests found extremely high pesticide toxicity.  I immediately increased Far Infrared Sauna and various detox treatments until I could meet with my functional medicine Doctor.  Now after two intense weeks of exhausting research, medical appointments, and enough follow-up that would make the great T.V. detective Colombo proud, I am hoping that my Doctor’s office has processed a referral to a State Toxicology Center.  I found a neurologist that specializes in seizures related to toxicity and I want to see her as soon as possible!

In the meantime, I try to function as best as I can.  Sadly the very difficult titration of a new medication either keeps me up most nights or wakes me up with breakthrough tic attacks every two hours.  (I still spend most weekends in and out of bed with sickness.)  The focus now is to inhibit acetylcholine that we hypothesize is causing the seizures because of damage from organophosphate poisoning (OP).  Acute treatments for OP are well known but not for long term effects; we simply do not know how long I have had this toxicity.  The medication is an interim measure.  I am wondering if various Lyme, fungal, viral, and even parasitic infections have sequestered OP like these organisms can do with other toxic agents.  We know that detoxification can increase feelings of sickness called “herxing” (from release and recirculation of mycotoxins for example) when we either detox too fast or our liver or kidney pathways are blocked.  I now use bitter herbs with various binding agents in a “push-catch” protocol that helps to better tolerate the process.

organophosphate poisoning, round-up, pesticide, herbicide, toxicity, toxic, clonidine, seizures, treatment,acute

So here we go again with another new treatment direction!  At least this time I have concrete lab values to help explain what is going on along with a new, promising treatment direction.  In the meantime I’ll be hanging out as the “chick in the box” (as Steve says) at about 124 or more degrees, trying to literally “sweat it out” in our sauna. There will be no anniversary celebration per se for enduring six years of hell albeit with some sweet moments sprinkled in here and there.  There will be humility though as I try to be a godly steward of this journey my Lord has entrusted to my care.  I do have hope for a better tomorrow.  That is where this blog began 6 months into this 6-year journey and I hope that is where I will remain beyond that too.

Thank you for sharing the road with me Gentle Reader.  When I see my stats ticker go up a notch my spirit gets a little lighter, knowing you are there.  Thank you.

With love,  JJjer, 29:11, jeremiah, hope, future, plans, says the Lord, Christian