You almost lost me

The side effects were just too bad, that Linzess nightmare awhile back

It started with paranoia then gave way to profound fatigue so I went to bed.

Hell met me there, a new kind with seized spikes of lost breath and shakes

Rotational episodes this time then bouncing off the bed with gutteral screams of agony.

What to do now? Thousands have punched my life this decade of intermittent/daily misery

When I can’t even think to pray just stare blankly into my mind’s eye, lids pulled tightly closed.

The visual anomalies reminded me of another medication side effect in a Mexican hospital

When the pregnant young nurse shook nervously as she gave me medication in the middle of the night.

That night I learned the terrifying reality of black boxed hallucinations that you cannot stop or control

You hold on for dear life, wondering if you will ever come away with your sanity, if the side effect ever ends.

So Tuesday night I recognized the pattern from 2009 that ramped up to a break in mentality,

Desperately pleading for a way to think clearly, to get out of the scene stuck on repeat.

“Ozone” came into my consciousness, not spoken just present all-of-a-sudden in my thoughts

But how when I am convulsing, wretching air, terrified of injury as my head and neck thrashed so?

“Just start” came the next words, “yeah right” were mine that followed, sorry, “pray tell how?”

We found a way, my distraught beloved and I. Water spilled about and I rolled around in a desk chair unable to walk.

It was ugly alright: running a medical device that can hurt you while your head drops to bang on the table a few times midway through,

Somehow I got the treatment in me, terrified this time of doing it wrong.

You can damage your lungs you know and perhaps Steve’s if ya miss a step or two.

I drank the water: 400 ml of 70 gamma was the strongest I knew how to process

And within 2 minutes the worst of the wretched, hellish nightmare was over. Then I wept.

A few rebound shaking episodes broke through before it was all over that night

Lying on the bed staring into the darkness this time just dark no weirdness in sight.

If I did not have my medical ozone system I am convinced that tonight I would be in a psych ward somewhere not here

Drugged with anti-psychotic medications, facing weeks of infirmity that’s if the drugs could be cleared from my system at all.

I don’t respond well to medications that affect the brain or “second brain” of the gut

Even a “pediatric dose” can create a crisis ranging from gut issues to this, the worst.

Several days later the seizure threshold remains too low to function yet at my baseline

I’m doing as best I can and taking rescue remedies more often, or rather via nurse Steve, even with the episode earlier tonight.

Be wary of Linzess Gentle Reader. JJ

Next up: Molecular Hydrogen


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

You Can Laugh at Anything but not Everything

Case Scenario #1

Husband helps his wife dispense a glass of water out of two-tiered water dispenser in the kitchen of some friends’ home during a New Year’s Day party.    Wife cautions her engineer husband to be careful as he tips the dispenser forward to get the water flowing.  Upper bottle suddenly becomes dislodged from the base, spilling 4 GALLONS OF WATER OVER THE WIFE AND THE FLOOR!!!  Mass chaos ensues as some scamper for towels for the floor then eventually for the wife.  Moments later I am outfitted in some cute-but-too-short sweats and socks while my jeans and warm fuzzy socks head to the dryer.  My shock at the incident lasts for hours afterward as I wasn’t feeling good in the first place.  Overall, I am glad we made it to the party and the hostess was very gracious.  I think we broke the water dispenser, though.

Case Scenario #2

Seizure attack episode ramps up then subsides as I decide to take my Epsom salt and baking soda hot bath today.  The soak was uneventful as I later drained the tub intending to take a shower and get going for the day — after all, it was already 2:30 in the afternoon!  For some reason I am immobilized and unable to get out of the tub for a long time.  My mind goes numb, I have trouble initiating more than one step of a task at a time, and I can’t seem to call or knock on something for help.  This is Chronic Lyme Disease and its complications.  Husband comes to my rescue and helps me get myself together with a little coaching from his occupational therapist wife on how to perform a tub transfer.  Flawless execution ensues.  More time passes before my coordinated movement returns and allows me to make my special diet/lunch at 6:00 p.m. or so.  I’m now very hungry and thirsty!  Food and drink revive me.  I think I’m moving a bit slower than normal, though.

So which one did you laugh at?  In the end, the second one was the most humorous for me.  Seriously!  The difference was the attitude of my husband.  An hour under the covers, recovering from a bath misadventure can be delightful between husband and wife no matter the details.  I guess it’s all a matter of perspective and I love it when Steve and I connect with the same perspective.    Maybe next time we will be “on the same page” so to speak when the water breaks loose.  This time, the bath water won, for sure.

(No honey, I’m menopausal not pregnant!  Gotcha!)