Tough and Tougher Still

Another injection of Prolia behind me for osteoporosis: Six weeks late due to having to change Providers and get re-authorization.

Nursing Supervisor administered the injection instead of the CMA as a precaution after discussing my history with these thingies.

One hour continuous convulsive episodes followed whilst clinging to a raised treatment table, fearful of falling off. The PRN Prednisone did nothing.

Nikki, the very sweet Nursing Supervisor, stayed with me in the dark, closed room for the entire time. I rarely get that level of supervision during an episode.

Sat in the treatment room for 30 minutes more to make sure there would be no mo rebound spikes.

Sat in the lobby for over another hour trying to stabilize to drive home, nauseous, weak, exhausted, pained. Thank God for a little HGTV on the monitors!

Cancelled plans to grocery shop. Gently drove home with a bad neck headache, etc.

I reek like cheap fragrance from that place. Time for a shower and as much sleep as possible whilst nursing the cold I am catching from my beloved Steve.

Wondering if my reaction was worse this time because the injection was 6 weeks late. (Delays also can increase the risk of fracture.) I worked really hard to get this done on time but it is the insurance company who literally “calls the shots.” Glory be, I will be doing this again in 6 months!

Let there be no mistake: if I did not have my faith in the Lord, Jesus Christ I would have given up by now! He sees us on our bed of sickness and weeps for our suffering. Always remember that our God reigns and I continue to trust Him. His mercy and grace, sustaining power is REAL. I lay down my sword and let my God fight for me. Lord willing, this 7 years of hell on earth will end; even if it doesn’t end I trust in the hope of eternity when all will be made right and good. Lord help me to be faithful in this difficult calling and thank you for your promise of restoration, of Your blessing one day. To God be the glory.

Gentle Reader, He will meet you where you are as well and carry you if necessary. Lay down your sword and let Him be your tough guy! Believe this day!

Just Julie

It’s Legal: CBD Oil is Here to Stay

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

 

 

 

Lift me up my Lord

Psalm-23 4

Lift me up my Lord, my King!

Don’t leave me here alone forgone

I am dying inside as one they have abandoned

Despite my attempts to serve, to obey, decaying inside all the while.

There is no reserve

To bring to life anymore

The light left me long ago when wretched darkness

Became the friend I never wanted and never invited to stay.

The desperation drips with tears

The emptiness has no where left for an infill

The days blur meaninglessly from one to the next

The prayers still go unanswered by the God who has always known best.

Grant me some goodness

Oh Lord of my heart, my King

I’m drowning here with no-nowhere left

To Google, to turn, to ask, to keep me going ’til the day You will speak.

Have I not done the things that are set

The ones I thought you showed me to do?

Yet the suffering ramps louder than my screams with each seize

Take me from this hell please oh Master of my heart.  Isn’t it my time?

waiting, wanting, scripture, Bible, patience, trust, suffering, His will

Humbly, I will wait.  JJ

Weary from the road

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!

Next up: Molecular Hydrogen

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