The TTT

The Tilt Table Test (TTT) is designed to assess the integrity of a person’s autonomic nervous system. The heart plays a significant role in its function as does the vagus nerve. With so many organ systems tied into the sympathetic (fight of flight) and parasympathetic (calming) fibers of the vagus nerve, one can see how it can affect numerous aspects of a person’s health . . . and ability to function. This is complicated. A TTT may introduce more questions than answers yet sometimes provide the reason a person has not responded to other treatments for seizures. Today, I’m just glad that I survived!

The nurse or examiner administering the test begins by starting an IV in your arm. The patient needs to have been fasting for about 6 hours and cannot have anything to eat or drink until the test is completed as many folks will become nauseous. While there are variations of the TT Test involving medications that increase your heart rate, no medications were used for my test. The purpose of the IV is for the administration of fluids should your blood pressure drop. This usually happens if you faint during the test. If you do faint then your test is considered “positive” and the cardiologist makes his or her diagnosis from there.

The test procedure itself begins with the patient lying on his or her back for 15 minutes on a mechanical bed that tilts up and down from head to toe. Heavy straps are placed over your shins, thighs, and lower chest to prevent you from falling off of the exam table should you faint! (The examiner is supposed to lower the table in the event of a fainting spell, thus ending the test.) After the initial resting period and baseline testing of your vitals (EKG, pulse oximetery, blood pressure, and pulse), the table is inclined to 70 or 80 degrees instead of the 90 degrees our bodies are accustomed to when sitting or standing upright. You stay in this slightly reclined position for 45 minutes or until you faint. Then the table is lowered and you recover over the next 30-60 minutes. My test was scheduled for 1 1/2 to 2 hours. My husband and I left the hospital OVER FOUR HOURS LATER!!!

The nurse tried to start an IV in my right hand but was unsuccessful. The needlestick triggered a 30-minute convulsive episode. My husband applied an ice pack to my hand and eventually I stopped spontaneously seizing, uttering primal screams, and crying. My body was already starting to lose control, my brain felt like it was on fire, and I was unable to straighten my legs for the proper test positioning until the episode had stopped completely. The Charge Nurse came in, talked a lot, then was able to start an IV in my left hand. It hurt badly and this triggered another, less violent convulsive episode. By this time our personal ice pack was melted so the Charge Nurse applied a bag of ice bag over my left hand. Eventually I stopped seizing and crying. The nurse examiner tried to start the test while I was still shaking. I politely declined. He waited. Finally it was time to begin.

Jason RN, elevated the table to 80 degrees. Within about 5 minutes I started to feel lightheaded. My head was swirling inside in a clockwise direction that seemed to be from about the 2:00 position on a clock face to the midnight position. My body didn’t move. I can’t recall exactly which symptom happened next but I do remember that the straps across my shins started to hurt badly. I was placing more of my body weight against them as my legs began to get weak. This feeling of weakness was like water being drained out of a bathtub: little by little in a steady stream my strength was going away, beginning with my lower extremities and working its way upwards.

A few tic zips re-emerged probably 15 minutes into the test. The hospital pillow provided no head and neck support whatsoever. By the grace of God I had anticipated this and brought a neck pillow with me which remained after their hard pillow had fallen off of the table. It remained in place as the tic attack ramped up to an intensity similar to that of the needlesticks although more intermittently than continuous at this point. I started to become afraid of where this thing was headed. I worked as hard as I could to stay calm and not to panic. My body was going into a crisis as the number of symptoms increased along with their severity: headache, burning in the tips of my toes, burning in the tips of my fingers, stomach ache, left-sided neck pain, increased ringing in my ears, feeling chilled and having difficulty breathing. Jason kept asking me how I was feeling but it was getting more and more difficult to speak. Then things got worse.

Eventually my legs became lifeless. It took a heroic effort to straighten or reposition them to alleviate the searing pain against my shins: could I turn my feet out so the pressure was more on the inside of my lower legs? I tried that. Then that hurt too. I had to wait before I could try again. I tried switching back and forth but my ability to do so was failing. Finally I conceded that my legs were going to be bruised no matter what I did so I had to pick a position and stick with it. I found that if I locked my knees together and turned my toes inward, some of the strap pulled against my calves and less on the bony surface of the tibia. With that problem solved I tried to focus on my breathing. It seemed too shallow. Hmmm. What is going on? My body was slowly starting to slump forward like someone was pulling my head forward a quarter inch at a time on a cord. I could not stop it. Was I going to pass out?

Every 2 minutes or so, Jason asked me a question to see if I was still awake. Or maybe alive? My body continued to bend forward like a large sack of flour as my world felt like it was going dim, dimmer still. Around this time I asked how much time was left, we were past the halfway point, yet time had started to stand still. My hunkering down for the duration of the test changed to wondering if I would pass out like I had in bed so many times after bad episodes. When those happen I don’t remember falling asleep. The lights just go out and I wake up hours later with no memory of dreaming, just pain everywhere from head to toe. So if I wasn’t going to pass out this time maybe I could fall asleep?

I tried to let myself go. I was terrified. I was crying. The tears burned on my face. Hair brushing against the side of my cheeks felt itchy-burny. It was all I could do to raise my right arm to wipe my face with my sleeve or move the hair scratching my face to stop the annoyance, the irritating sensations of anything touching my face. And then it was nearly impossible to breathe with the strap cutting underneath my ribs, restricting my diaphragm. I kept saying that I couldn’t breathe. “It’s hard to breathe.” The test continued. “How much time left?” I mumbled. I don’t remember the answer. My husband Steve later confirmed the feeling I had that the left side of my faced was drooping. My tongue felt thick and I couldn’t move it to speak very well. It’s as if the lights were going out on my life. I was not going to faint as can happen with this test. I was going to die.

That’s when my thoughts turned to my Lord and Savior, Jesus Christ, dying on a cross for my salvation. In that moment I got a tiny view into His suffering at Calvary. Crucifixion was designed for maximum suffering until the convicted person died of asphyxiation. The convict would push up on his feet against the wood footplate to catch a gasp of air; in doing so this sent lightening bolts of fiery pain through the body from the nails piercing the nerves and tendons of the feet and hands that bore the weight of his entire body. The body would sag down then perhaps the head would hang as the person longed for death to end the most gruesome misery imaginable. But hanging one’s head obstructed the airway. There was no relief to be found. And our Lord did this for me. The guards pierced His side to make sure Jesus was dead. Through it all, Jesus declined the gall herb offered to ease his pain. He endured it all with a clear mind in a body already beaten and shredded beyond recognition before He was crucified! And then He finished the work of the Cross when He rose again on Easter Sunday. He overcame death and provided a path for all believers to receive eternal life, to be free one day of all suffering and consequences of sin in this fallen world.

cross, calvary, testimony, hospital test, Christian woman, chronic illness, endurance

My recognizing my need for a Savior and accepting His sacrifice years ago thus hath provided a way for me to endure my suffering on that Monday at the hospital. Whether I was going to die, or pass out, or make it to the end of the test fully awake and aware of my surroundings, I was going to be walking with my Jesus through it all. He was there with me in that moment when I simply could not breathe anymore and when the table finally lowered me to safety. In a matter of seconds, the test was over. I endured the TTT and got what I was supposed to understand about my suffering that is coming up on 9 years. Also finally, a medical test actually captured with objective data the hell that I have endured. My heart rate did increase and blood pressure drop although not extremely so. I had marked symptoms. I believe that it was a positive test even though I did not faint. For some reason the Lord kept me awake hanging there as far over as the straps would allow without fainting or dying. In my mind I was just about gone for good. In the Lord’s will, I made it through the most difficult of hundreds of tests in my lifetime.

But it wasn’t over yet. As soon as I was level, my body exploded into the most violent of convulsing that would happen that afternoon matched with gutteral screams, hysterical crying, and gasps for air. I held on for dear life. The episode continued for the next 90 minutes or so while I pleaded with the nurse to call the cardiologist to order IV fluids then check my blood sugar: 76. Thirty minutes into the non-stop convulsing, the infusion started and began to calm me down; it took a snack bar plus another 30 minutes before they would stop completely. I was a beaten puppy, so very broken and battered by the time it was over. The 90-minute infusion restored me enough to speak coherently and walk to the bathroom then later into our truck under my own power, albeit weakly. Over the next 2 days I stabilized. I still feel “buzzed” 3 days after the TTT. I’m also irritated that I don’t have my test results yet as promised. Sigh. That’s healthcare these days. I found out that Jason, RN had only done 10 of these tests since he was transferred to the Heart Institute from ICU a month prior. He was very nice. Regardless, I doubt he should have left me hanging there gasping for air, completely slumped over and hanging from the straps of the tilt table for several minutes. The goal is not to traumatize and torture the patient! I am still horrified by what I endured. I’ve had numerous bouts of crying as my mind flashed back to the ordeal, slowly emerging from a state of shock.

So if you found this blog after Googling “Tilt Table Test” well what can I say? This is probably one of the worst stories out there so don’t worry about it. Yours will very likely be fine. I didn’t vomit and that is good. The TTT results will very likely answer some important questions about my condition, maybe even point the Doctors to a treatment plan that will stop the daily convulsive episodes once and for all. The role of the autonomic nervous system in non-epileptic seizures has never been more clear for me as I start to benefit from targeted vagus nerve stimulation techniques and tools. Even the TMJ/trigeminal nerve interventions are related. Virtually everything I have done to date to try and get well has yielded valuable information if not improvements and personal growth. I have never felt closer to the loves in my life which is valuable indeed. My Stevers continues to be my hero through it all. In the end, the Lord will not waste any of our suffering, joys, or sorrows in His wondrous plans for our lives. Hang on, Gentle Reader. Hang on to that Cross! JJ

Bouncing back, bouncing all around

It’s a good thing that the Lord is great and consistent every single moment of every single day, keeping our best good in mind when we are bouncing around a bit in life. Yesterday was a day with two of those hits for me.

I recently described a dilemma I had with a new treatment direction as I trend overall toward recovery from a serious illness. I am grateful for some better days and many more better moments than most of the past 7 1/2 years. I’ve barely grasped the significance of all of the changes let alone managed the new patterns of illness/recovery/illness and so on. The following 2 pictures from my early “birthday celebration” depict this very well I think.

9:00 a.m. after my alarm went off, back to bed then after the tail end of an unexpected/long tic attack episode, and needing to eat before taking PRN medication. I can’t control my left arm and struggle to feed myself, manage dental appliances with assistance.
4:30 p.m. celebrating at the Chit Chat Tour of social media stars Diamond and Silk before dinner along the riverfront.
JW Marriott, Grand Rapids, MI

With the blessing of an incredible local endocrinologist (that I miraculously got to see in record timing) I am free to make my own changes with new medications (this time covered by insurance, yay!). Her intervention has led to both successful and sometimes confusing experimentation. I’ve consulted with a local compounding pharmacist, prayed and landed on a plan that includes returning to mercury detox. Mercury can be sequestered in the tissues of the thyroid. I suspect that Hg is getting stirred up, even dumping as I transition from suppressing the thyroid: Docs prescribed high doses of meds for decades but an Endo at the Mayo Clinic recommends drastically titrating them down. I can’t seem to go fast or slow enough to cope with the outcomes each day. Hg as a mitigating factor seems the only plausible explanation to me right now given that I was doing so well initially then the seizure attack episodes returned. And mercury binders, minerals affecting the thyroid inversely affect the pattern of episodes. Mercury showed up again in recent blood work . . . Gratefully I have the best tools around now for both of these avenues.

I felt really beat up and exhausted as we left the house later today yet rallied for the cause of celebrating my upcoming birthday none the less. The tickets were already purchased for a show that is a long car ride away from home and my beloved Steve would be doing all of the driving as usual. It was a good decision to go. I had a really nice time with Steve. Then I took my Hg binder supps too close to bedtime and have been awake all night. Well crapolaski! (That’s Polish, of course.) This time at least I was able to get some correspondence done as the night broke into day. Crying and weeping really take the life out of you for a time, then joy comes in the mourning.

But social media stars Diamond and Silk are exactly the rescue remedy that I needed today. They are a hoot! Don’t follow this link if you aren’t open to other political viewpoints in our hotbed of political correctness in the United States these days. These sisters are polarizing! Kind of refreshing for me: a gal who has chosen to be transparent with the real ups and downs of overcoming a serious illness. The straight scoop is just alright with me. “Don’t sugar-coat it baby! That’s right!” And so is the Word from Lord, Jesus Christ, that sees me through it all. I hope He will do the same for you Gentle Reader. Have you trusted in Him no matter what? JJ


And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.


1 Peter 5:10

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

 

 

A Plausible Case

As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness.  I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick.  Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

  • Hours of daily convulsive episodes, every single day
  • Headaches
  • Painful shoulders, forearms, hips, neck, jaw, and more
  • Ringing in my ears
  • Multiple severe chemical, mold, and sound/light sensitivities
  • Significant nutritional and hormonal deficiencies
  • Fatigue
  • Episodic cognitive and emotional setbacks
  • Periodic night terrors, nightmares, waking terrors
  • Weakness and deconditioning
  • Air hunger and chest compression symptoms
  • Neuropathies
  • Severely disrupted sleep/wake cycle
  • Food sensitivities despite a restricted diet
  • Gut dysbiosis
  • Inability to consistently perform activities of daily living or work
  • Social isolation
  • Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time!  Today was no exception.  Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth:  my Stevers.  We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day.  It was the “same story, different day” around here.  And something else happened too:  I may have discovered another piece of this wretched illness mystery:  Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update.  It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr.  “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74).  There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens  transferred in tick saliva after a bite.  In two weeks I will have a diagnostic procedure in which these tests could also be performed.  Whoa Lord.  Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good.  All the time.  God is good.  Today I felt led to add back a probiotic that I actually was able to tolerate this time.  The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen.  Or to any abdominal exam.  Or to physical therapy to the hip flexors in the lower part of the abdominal wall.  Or to certain foods.  At any rate, a new door has opened and there are new possibilities for getting well.  Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned.  This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station.  In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt.  We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do!  (I told you that I worked in an amusement park one summer didn’t I?  Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper