Tag: Tics

The next big thing

Published on by Jesus is for the Wounded1 Comment

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

 

It’s Legal: CBD Oil is Here to Stay

Published on by Jesus is for the Wounded1 Comment

A couple of years ago, I ordered my first bottle of CBD oil from Bluebird Botanicals.  My hope is that it would take away the seizure attacks that I experienced on a daily basis as part of a serious and complex illness.  The preliminary research showed that CBD oil made from industrial hemp would be legal for me to purchase in Indiana, was effective for intractable seizure disorders affecting children, and would bear few if any side effects.

I tried it.  I slowly increased my dose over the next 3 weeks to the level indicated in the testimonies and research that I had found online.  Then things went terribly wrong.  I started to have frightful nightmares.  They increased in vividness and horror then were joined by waking night terrors.  These are the kind that don’t stop when you wake up!  I was scared to continue.  I backed down my dose, took a break, re-started and nothing seemed to bring relief.  The benefits of halting or preventing seizure attacks did not outweigh these horrible side effects.  Eventually I abandoned CBD oil altogether.

While medical marijuana has Cannabidiol (CBD) as an ingredient, you don’t need to live in a State where medical marijuana is legal to obtain CBD oil by itself.  Medical marijuana also contains THC which is a schedule 1 controlled substance in the United States.  CBD oil from industrial hemp only contains .3% THC.  This allows sale of pure CBD oil in all 50 States.  For me the .3% was still too much.  I would later understand that I don’t even have a genetic disposition in my opiate receptors to explain my hypersensitivity to THC.  Heck, I smoked pot occasionally as a young adult without any ill effects.  There would simply be no explanation for my intolerance of legal CBD oil from industrial hemp.

industrial, hemp, CBD, oil, seizures, convulsions, benefits, legal, legalize, Lyme, tremors, tics

Flash forward 3 years.  I became acquainted with a company who manufactured pharmaceutical grade liposomal products.  When they introduced a CBD oil product made from industrial hemp, I decided to try it again.  I still suffered from daily convulsive episodes although the number of hours lost per day to them had decreased after beginning IV antibiotics for chronic Lyme disease.  Seizures, tics of organic origin, non-epileptic seizures (or whatever you want to call them) were a definite neurological complication of latent Lyme disease.  The episodes were less per day but not gone.  I ordered a bottle.

I did not get past a single dose of the new product before suffering another waking night terror incident.  Dang!  The only difference this time was that the superior liposomal nanoparticle size delivered the CBD more quickly to my brain than the Bluebird Botanicals product — and for me that was not good.  I returned the bottle to the healthcare professional from whom I had ordered it.  And then I waited.  There would be no other compelling rescue remedies to reduce my suffering when the nightly episodes came.  No doctor would order medication for me to even try; I have been to the Emergency Room 10 times over these past 4 1/2 years because of wretched convulsions!  Even over-the-counter Benedryl would leave me unable to function very well the next day if it did stop them (and render me too sleepy to care about anything the next day).  A few herbal antibacterial supplements offered temporary relief on occasion and the reason for that will be another blog post about Small Intestinal Bacterial Overgrowth (SIBO).  Neurotransmitters and hormones that can give rise to seizures are manufactured in the gut dontcha know . . .

I learned that one of the better manufacturers of CBD oil was preparing to introduce a THC-free CBD oil so I contacted the owner.  I leveraged everything and asked to try a beta version of their new product.  Within 2 weeks the bottle arrived in the mail.  It took around 15 drops to get a significant response:  their THC-free CBD oil definitely helped reduce the intensity and duration of the nightly seizure attacks.  Yeah God!  This benefit happened even when herxing (or reacting) to a new antibiotic used in the treatment of SIBO.  Some relief came at last!  I am optimistic for the benefits that I might receive when the first round of antibiotics for the treatment of SIBO are completed in 5 more days.  Perhaps healing my gut will help everything as well.  In the meantime I have contacted the owner again to see if I might obtain additional product; my hope is to transition from using it as a rescue remedy to having enough for regular dosing that can help prevent the episodes altogether.  I may need to switch brands to get this accomplished.  We’ll see.

CBD oil is legal for purchase in all 50 States of the USA.  If you are frustrated with noxious symptoms especially tics, seizures, pain, depression, or anxiety, there may be hope in the use of CBD oil from industrial hemp.  Please do significant research on the track record of the manufacturer, look for independent lab testing of purity/potentency/concentration of active ingredients and absence of unnecessary fillers before making your purchase, especially if online.  Very likely you will not find a superior product at your local health food store as hemp seeds and hemp oil contain too low a concentration of CBD to make much difference for a serious health condition.  Here is one brand that is available only from healthcare practitioners nation-wide:  Colorado Hemp Oil.  And this website has some good general information although note that it used to be funded by a manufacturer of industrial hemp products:  Project CBD.  I am not sure of its current status.

This is my story and I’m sticking to it!  I am not an expert by any means just a gal trying to find some relief in an ethical, legal, and medically sound manner.  Feel free to share pertinent information below.  Please don’t try to sell me anything!

Take care, JJ

← Back

Thank you for your response. ✨

 

 

 

Weary from the road

Published on by Jesus is for the WoundedLeave a comment

Christmas chocolate.small

“They say no pain no gain

I say roses are worth the rain!”

Or so the song went that I wrote back then

When “recovery” seemed like something I could attain.

Decades later I realized the wisdom of Robert Hasting’s Station

A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’

Too bad life is often not like that:  the good, the bad, the ugly all take their turn

You never really know what you are going to get when your head lifts from the pillow at dawn.

And so goes my new treatment when things have gotten worse before getting better,

How is this even possible when it appeared the Lord orchestrated these steps to the letter.

Now faith means holding on to that which is unseen for the promise of my Lord’s Day

When the suffering will end, be redeemed for glory whether it comes soon or some other way.

I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–

With love in his eyes, his heart he prayed for healing and more once again like so many times before.

We know our Lord hears us and that we have His will, His heart within our own

I just pray I can hang on this weary road that seems to have gone on just too long.

[Please send chocolate . . . pure unsweetened cocoa butter works best right now.  JJ]

************

My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  Revelation 21:4  Somehow, someway, I am going to make it, Gentle Reader!

The Price of Admission

Published on by Jesus is for the WoundedLeave a comment

Garfield2016-01-15

Garfield tells it like it is and that is the way I like life to be as well . . .  No pretense here, ever!  He must be chemically sensitive too?  I digress . . .

To get well from a serious illness, one consistently pursues recovery as if he or she is on a journey, not sprinting as if in a race.  My journey of late has included a trial of molecular hydrogen, nebulizing sea water to ease a chronic sinus infection, and experimenting with a Glutamate-Aspartate Restricted Diet (GARD).  Yeah it’s never just one thingy with me!

Some additional research and a consultation with my Doc suggested a link between the GARD, sinusitis, and latent Lyme disease that might be addressed with a course of antibiotic treatment.  Yes, IV or IM Rocephin may address all three.  Rat studies have shown that Rocephin can lower glutamate levels thus helping to raise seizure threshold.  Since I am a card-carrying lab rat anyways it seemed logical to go for a trial of antibiotics for a week then re-evaluate my tolerance for it during my next Doc appointment in 7 days.  Very likely the treatment will continue for several weeks.  Today was treatment day #1.

I began this process pressing forth to complete a lab test beforehand so as not to skew the results with the upcoming antibiotic.  The preparation required a restricted diet of only 2 foods for 24 hours, fasting, and some stressful sampling procedures all ending just one hour before the first IV treatment at the hospital.  The Lord sustained me as I assembled the kit and wolfed down a supremo salad that I had prepared the night before.  I left our home shortly after the FedEx truck picked up the completed test kit while giving our dog something to bark, bark, bark about.  The wings of my Savior, Jesus Christ carried me to the hospital on just 3 1/2 hours of sleep:  less nervous and ready to blast the heck out of whatever might be keeping me sick.  Let’s do this!

Not so fast though!  Just before heading into the Outpatient Clinic I had a violent expulsion of stool!  Whaaaaat?  Good golly!  Looks like the Lactulose test prep was taking effect all at once!  Now what should I do?  I was soiled through all of the layers of clothing I had worn to keep warm.  Fortunately this all happened in a hospital where they have linens and hospital scrubs available.  Alright so I cleaned up, put on the call light, confided my plight to one of the nurses, changed my fashion motif a bit, and returned to my chaise lounger a little wet, a little shook up from everything.  let’s do this?

The biggest hurdle for me in receiving the 50+ IV treatments and 50+ lab draws I’ve had these past 4 years has always been the needle stick procedure.  Virtually every time a needle either goes in or out it triggers massive convulsive episodes.  Fortunately Jennifer, the RN, has more tricks for poking rolling, spindly veins than anyone I have ever seen for care.  The first stick failed resulting in the usual shakes and shouts.  So we just waited until my world calmed down and I got a few more moments of the best distraction ever under my belt:  HGTV on the little swing-away monitor at my station!  Watching Island Hunters and the like has saved me from tears many times for sure.  (Such a treat!  We don’t have cable service at home.)

Gratefully the second stick was successful.  Gratefully there were no ill effects during the infusion just fatigue.  Gratefully I was able to run an errand to the meat market secretly in wet jeans underneath my scrubs before returning home.  Gratefully the nap came easily after showering and without seizure attacks.  The hell returned later in the evening but overall I got away with at least one fewer episode today.  God is good.  He carries me through so much!

I ask the Lord often why things always have to be so difficult for me?  I really don’t get any answers other than to know that He sees my suffering and promises to love me through it all.  That love is tangible in the graciousness of my beloved husband, Steve, who listens to my stories and sees me through the roughness that characterizes some part of every day.  Perhaps someday I will get to see why the “price of admission” for me to get through my life has been so devastatingly high.  This stuff ain’t for wimps ya know!  In the meantime I will carefully wrap the IV in my arm before showering, clean myself up, run more loads of laundry, and shed some tears along the way.  I am not alone and know what to do.  I have been through IV treatments before and so have many of my fellow sojourners.  We can do this!

At least now there is fresh bacon in the house.  And that Gentle Reader is a mighty good thingy!  I am sure Garfield would agree!  JJ

Next up: Molecular Hydrogen

Published on by Jesus is for the WoundedLeave a comment

Abstract

Molecular hydrogen (H2) has been accepted to be an inert and nonfunctional molecule in our body. We have turned this concept by demonstrating that H2 reacts with strong oxidants such as hydroxyl radical in cells, and proposed its potential for preventive and therapeutic applications. H2 has a number of advantages exhibiting extensive effects: H2 rapidly diffuses into tissues and cells, and it is mild enough neither to disturb metabolic redox reactions nor to affect signaling reactive oxygen species; therefore, there should be no or little adverse effects of H2. There are several methods to ingest or consume H2; inhaling H2 gas, drinking H2-dissolved water (H2-water), injecting H2-dissolved saline (H2-saline), taking an H2 bath, or dropping H2-saline into the eyes. The numerous publications on its biological and medical benefits revealed that H2 reduces oxidative stress not only by direct reactions with strong oxidants, but also indirectly by regulating various gene expressions. Moreover, by regulating the gene expressions, H2 functions as an anti-inflammatory and anti-apoptotic, and stimulates energy metabolism. In addition to growing evidence obtained by model animal experiments, extensive clinical examinations were performed or are under investigation. Since most drugs specifically act to their targets, H2 seems to differ from conventional pharmaceutical drugs. Owing to its great efficacy and lack of adverse effects, H2 has promising potential for clinical use against many diseases.

Learn more at:  Molecular hydrogen as a preventative and therapeutic medical gas.  And:  The Molecular Hydrogen Foundation.

I was recently introduced to molecular hydrogen in a webinar endorsed by Quicksilver Scientific (QS).  QS sells a product that makes tiny amounts of hydrogen gas when you drop a tablet in a bottle of water.  I posed a question to Dr. Chris Kessler, the speaker that night and before long I was off in a new direction investigating this “new” yet well-researched element.  Along the way I found these statements which made the topic very personal to me.  While I do not claim to understand these mechanisms very well, when I see similar words and phrases repeating themselves in documentation written by those who do understand them I take note.

In Wikipedia I found a discussion of four major hypotheses to explain the profound fatigue after an epileptic seizure.  Remember that I do not have epilepsy, per se, yet this literature often explains the symptoms that I experience.  [This may answer the questions a family member of mine (retired anesthesiology nurse) recently had when I described being bedridden 12-18 hours per day due to 2-10 hours per day of convulsive episodes.  Yes, indeed!]  One mechanism that pointed the potential benefit of hydrogen gas in raising seizure thresholds stated the following:

While not an example of active inhibition, acidosis of the blood could aid in ending the seizure and also depress neuron firing following its conclusion. As muscles contract during tonic-clonic seizures they outpace oxygen supplies and go into anaerobic metabolism. With continued contractions under anaerobic conditions, the cells undergo lactic acidosis, or the production of lactic acid as a metabolic byproduct. This acidifies the blood (higher H+ concentration, lower pH), which has many impacts on the brain. For one, “hydrogen ions compete with other ions at the ion channel associated with N-methyl-d-aspartate (NMDA). This competition may partially attenuate NMDA receptor and channel mediated hyperexcitability after seizures.”[2] It is unlikely that these effects would be long-lasting, but by decreasing the effectiveness of NMDA-type glutamate receptors, high H+ concentrations could increase the threshold needed to excite the cell, inhibiting the seizure and potentially slowing neuronal signaling after the event.

That last sentence was the most intriguing part:  suggesting that high concentrations of hydrogen gas could be a mechanism preventing further seizures after an episode.  This not only could explain the fatigue but to me raise the possibility of hydrogen ions preventing a reoccurrence altogether?

Now singling out the concept of oxidative stress, it was easy to find research that supports the idea of oxidative stress being a factor in many types of seizure activity.  Here is one summary (abstract) of an extensive review article:

Combined, this review highlights pharmacological mechanisms associated with oxidative stress in epileptic seizures and the potential for neuroprotection in epilepsy that targets oxidative stress and is supported by effective antioxidant treatment.

A person can find research to support just about any hypothesis these days.  I tend to look for findings published by public/non-profit and not private organizations/companies; review articles that summarize many related studies; topics with lots of published studies in peer-reviewed journals; and of course consistency of themes, mechanisms and findings.  Individual studies are best when conducted with larger sample sizes, and whose conclusions state both positive and negative implications of the results.  The smaller studies and case histories have some benefits as well when you can see the exact protocols used and I can relate to the characteristics of the subjects.  You know, test dummies like “lab rats” and zebra fish  . . . NOT!  :J

There was one negative implication for me that I found should some upcoming testing implicate the presence of a Small Intestinal Bacterial Overgrowth (SIBO).  I am battling right lower abdominal pain that has yet to be diagnosed.  Gratefully the pain is decreasing with tolerance of addition of an enteric-coated probiotic and bacteriophage version of another pre/probiotic.  Good golly this gets complicated!  If the release of hydrogen gas (which is found with methane gas in the diagnosis of SIBO) is a bad thing as some suggest then I will need to revisit this whole idea of molecular hydrogen as a treatment intervention.  Oh dear, aren’t we talking about a different kind of bad gas here?  Not sure yet.  Eeeeek!

Active H2, seizures, convulsions, epilepsy, molecular hydrogen, hydrogen, gas, oxidative stress,
Additive for creating molecular hydrogen in water

If my results with this new direction are positive, you’re gonna read about it Gentle Reader!  Gratefully a well-known researcher has agreed to assist me as a test-case, beginning with a product that generates molecular hydrogen (MH) via an additive in a bottle of water.  I understand that this additive relates to “alkalinity” more than the making of alkaline water, per se.  This process is also different from ingestion of hydrogen peroxide which, while touted as beneficial in the epilepsy communities, can be dangerous!  If MH balances anti-oxidants and pro-oxidants, modulates gene expression, has the potential to raise the seizure threshold, and has a beneficial impact on ph then those seem like good things to me.

Lord willing, I am going to get well!   I will write more later on this subject as I dig a little deeper.  And be sure to follow this blog for updates.  JJ