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

What else could they do?

The glass chamber is designed to match your body temperature while you complete the subtests of the Pulmonary Function Test. Mike did his job. Steve helped where he could. And for me?

The trauma was REAL.

The cardio-pulmonary work-up continued this past week with a carotid ultrasound, beginning of a 7-day EKG event monitor, and the torture chamber otherwise known as a Pulmonary Function Test (PFT). Perhaps the PFT is not designed to create stress but completing it between 5 sets of convulsive episodes was a real bite in the shorts!

I knew the risks for me for the PFT from having completed one about 5 years ago. We were unable to progress to the section administered after a bronchodilator medication because of convulsive episodes triggered in the first few subtests. So this time I asked my beloved to drive me to the hospital for the test and brought with me several rescue remedies that sometimes stop the attacks. With assistance to administer them I might get through it all. When Thursday came I was not motivated to head out the door for the hospital and after only 4 1/2 hours of sleep. Looked like it was going to be the same story, different day.

The first part of the test went alright as Respiratory Therapist Mike kept a close eye on me. I had given him the spiel of what can happen if I had a seizure attack, including the request not to call the paramedics if I had an episode! He said he understood and actually stayed calm throughout the entire ordeal. Seizure-like tics began after the 2nd subtest and most of the ones that followed. Steve graciously brought me the ice pack I had in my lunch bag which served to slow each episode once placed over my sternum. We continued and eventually got it all done like a good beating on a warm summer day.

The test that required you to breathe against resistance was particularly frightening. When deep breathing or panting re-triggers the episodes, I thought that surely breathing against the mouthpiece where my airway would be blocked would be good. On the contrary. It actually calmed me down considerably! Holy cow. Have we found another tool to help control these dang things? Mike said that breathing against resistance stimulated the vagus nerve. Well there you go again. I first started looking into vagus nerve seizures and treatment strategies at the beginning of 2018. This ultimately led me to see a Craniomandibular Specialist and the rest is now history. But here we are again. The trigeminal nerve of the TMJ and the vagus are interrelated cranial nerves. To date only these 2 of the many vagus nerve stimulation techniques I have tried have proven to be helpful. Turns out there is a difference between the sympathetic and parasympathetic fibers of this 10th of the 12 cranial nerves; the trigeminal is the 5th. We shall revisit this topic here again another day for sure.

The PFT was scheduled for about an hour. We left after 2 hours! Each time there was a trigger of seizure-like tics, we had to stop for me to struggle to pick up the ice pack on the laminate floor of the glass chamber, apply it to my chest, then wait for things to calm down again. The violent shaking wrenched my neck. I longed to lower myself to the floor and curl up in a ball, holding my head and neck. The pain, the pain. At home I struggle (or Steve carries me) to lie down someplace safe where I can grasp my head and neck to prevent whiplash. Not so during the PFT. My right leg banged against the metal frame and glass walls of the chamber a few times; my body tensed with fright as I feared falling off of the narrow stool and onto the hard, linoleum floor. No warm blanket was anywhere to be found. Mike and Steve just watched in silence each time. What else could they do?

Times like these finds me terrified of falling and getting injured. Gratefully I have never fallen even after thousands of these wretched episodes. But initiating movements of any kind to either speak, break a fall, or otherwise create safety exacerbates the directionality and velocity of the seizing; this in turn creates a high risk to fall or get injured! Too bad that I am awake to remember all of this hell unlike an epileptic seizure where the person is unconscious. (Well it’s probably good so that I don’t have the injuries that can come with falling after passing out.) I guess it’s my own form of grace manifest as survival mode. Tense my muscles to prevent of a fall but trigger a rebound: increased rapid-fire, uncontrolled shaking of an appendage or two that may bang against whatever is nearby. Metal frames and glass walls. Still can’t speak most of the time. Breathing? Yeah maybe. Oy vey. I hate this!

It took awhile after the PFT was over to regain enough muscle control to walk out of the chamber of doom to a chair across the room. Perhaps it will be diagnostic for the cardiologist later this month as to why forced-breathing maneuvers trigger such bad episodes? Maybe the test results will show something this time? Everything flooded my mind as I tried to be pleasant to the two men staring at me the whole time who were powerless to do much to help. They were both most kind. I could see it in their eyes above the masks they both wore. (I was the only one allowed to remove mine! Go COVID-19!) Mike and Steve remained standing as I slumped into a hard plastic chair in the opposite corner of the room. One of them asked if I needed anything but I just couldn’t speak very well yet to respond. Managing the wires from the EKG event monitor, holding the ice pack to my chest, and groping for a snack bar in my lunch bag for something to revive me was about all I could handle. Steve opened the packaging of a Clif Nut Butter Bar and helped me get a drink of water. He knows the routine well. Love that man!

Cracking jokes has been my way to bring humanity to this hell when someone new comes along for the experience. “Welcome to my nightmare.” “I guess I’ve completed my involuntary exercise program today.” Or something similar are my usual bylines. I let a few fly. Before long we were leaving. I was walking verrrrry slowly however.

Somehow I got through a telehealth medical appointment a few hours later followed by a full day of several long blocks of sleep. Thankfully I had made some food ahead of time and thankfully Steve was willing to bring me a meal later on as I began to recover. My Skype appointment on Friday needed to be cancelled and I declined an additional make-up appointment from a second Provider. I was too weak and shaky. About all I accomplished on Friday was a load of laundry and achieving many levels on a word game app. The pup got lots of scratches too.

Two days later I realized how traumatic all of this was. A dearth of tears busted out after yet another bad episode and eventually I got the story typed out here. Perhaps someday these wretched convulsive episodes will stop. Maybe my beloved Steve and I will actually get a peaceful night of sleep on a regular basis, together. Maybe my life will be about the volunteer stuff I get to do here and there instead of medical appointments every week. Seems like we are getting closer than ever before to the mechanism of action of what triggers and what stops these waking, convulsive episodes; I have a few rescue remedies that keep me out of the emergency room these days. Yay God! Lord willing, I pray and plead, my Jesus will mercifully bring me to complete healing. Maybe someday soon? JJ

King Tut Grass and Cannas @ParkviewHealth
Mandevilla vine, Begonias, Geraniums (right) and Potato Vine (left) @ParkviewHealth

He’s going to make it

My beloved is following his dream

To fly, fly away, up into the sky.

Tis nightfall before the test of his study

Everything in him has turned accordingly.

I knew from my past what to do

The helpmate must get behind her man.

Extra chores, some sacrifices and then

You will share the joy of your man realized.

For settling one’s fears yields a greater good

Don’t worry dear wife, he will share this with you.

Your life will be even better than ever, it’s true

Fall in love with his loves as you do him too.

The rewards will come naturally and exceed your dreams

Your own desires will be satisfied along the way too.

God’s plan is so good. Trust in it this night.

My beloved is going to become a private pilot

“Gooooo Steeeeve!” I love you!

UPDATE: And after rescheduling due to overcast skies, Steve became a private pilot on Tuesday, August 20, 2019. Congratulations my love! We celebrated with his first flight that Friday with my beloved as Pilot-in-Command and yours truly. Story to follow . . .

As you consider Holy Yoga: Part 1

Holy Yoga, pose, woman, mat, Christian, blog, evaluate, discernment

As an occupational therapist trained in therapeutic exercise and as someone who taught aerobic exercise in clinical settings years ago, I have always watched the trending in the health and fitness industry.  I recently explored various fitness certification opportunities as part of my continuing education requirements as an OT, including those oriented toward low impact dance and yoga.  ROM Dance  was part of my repertoire years ago when working in mental health settings.  Match these interests with keeping a close eye on the alternative health industry that came on the heels of the New Age movement of the 1990s.  Early on I decided to match all of these observations against the available clinical research and especially the truth of Biblical scripture as guiding lights.

So is there a back-story?  Yes, there’s more!  I am seeking a gentle, supportive movement  practice, ideally consistent with my Christian faith, to aid in my recovery from serious illness.  The trauma of this serious illness has left me with several medical complications, deconditioning, weakness, physical limitations, and an altered body awareness that I believe can get better.  I had been exploring and pursuing some possibilities in the world of dance, exercise, massage, and traditional occupational and physical therapies when along came Holy Yoga:  a “community of believers on mission to bring the Gospel to the ends of the earth through the modality of yoga.”

In a few blog posts, I will explore Holy Yoga and come to a personal decision about whether or not I will pursue it at this time.  I started my research at the Holy Yoga website then jumped right into some challenging viewpoints but not from the Christian or even medical communities.  Instead I listened to a lengthy YouTube video of Hindu philosopher, Rajiv Malhotra’s, interview of Holy Yoga Founder Brook Boon.  Talk about what the political world calls “opposition research!”  Below is the feedback I posted after viewing the interview.  My next steps will be to research the response of the Christian community and probably attend a class locally.

Here’s Part 1.  Stay tuned for Part 2!

Nice job Brooke Boon!  I might clarify to Mr. Malhotra that Jesus is God, the Holy Spirit is God, the Father is God:  the God of the Bible and NOT a manifestation of God.  Each person of the Trinity is one God, 3 persons.  Liken this to the fact that I am one human being but a wife, sister, and daughter or 3 person-alities.  Not an exact analogy but it can help understand that the one true God is a clear, Biblical distinction from the plethora of Hindu gods that are dead, powerless manifestations of their “god.”  But more on that theology is a discussion for another time.

Further, I really wish Mr. Malhotra would have had the decency to give Ms. Boon his interview questions beforehand, especially if he intended to debate the nuances of Hinduism and Islam in contrast to Christianity.  He said the interview was to be a “dialogue” however his theological questioning and word choices indicated otherwise.  His agenda to discredit Holy Yoga was polite yet clear.  For example, he said at the end of the video that Hindus must “be aware” and essentially wake up to what Christians were doing with Holy Yoga; he also claimed that Holy Yoga’s purpose was to evangelize.  Seems like evangelism may come with the Foundation’s outreach to victims of sex trafficking but wasn’t this an interview about the story, benefits and beliefs of Holy Yoga classes not the Foundation?  Might want to differentiate the two sir.

It was important for me as a born-again believer in Jesus Christ who is exploring Holy Yoga, to view this interview.  I saw clearly how someone who is not a Christian cannot fully understand the tenants of the Christian faith from, for example, literal translations of scripture.  These literal interpretations weaken Mr. Malhotra’s subtle challenges, arguments, and warnings about Holy Yoga.  Specifically, his references to “the law” were not about Roman law as he claimed but God’s law given to Moses (as documented in the God-inspired Old Testament) to help guide the nation of Israel.  The Mosaic law helped define right and wrong to a lost people, lost society, and provide guidance as to how to live.  It also instructed them on how to relate to God and atone for sins or wrongdoing.  This law was later replaced with the death and resurrection of Jesus Christ, indwelling of the Holy Spirit, and New Testament teachings from Christ and His disciples.  Persons of various “religious affiliations” or “denominations” outside of Christianity seem to like to focus on “the law” concept instead of Christ’s concept of grace because they are used to the structure and constraints of rituals . . . as if it is the rituals themselves that make them somehow right or wrong:  better people or worse yet, right before their definition of God.  And their definition does not match that of the single God of the whole Bible.  Christians who are born-again believers are free to express themselves with various traditions, cultural garb, etc. (and even try on the dressings of others) but never look to them for salvation.  Cultural traditions/trappings have no inherent power.  Only faith in Jesus Christ alone can save:  bring us eternally into a right relationship with The One True God and eternal life.  It’s simple really:

John 3:16 New International Version (NIV)

16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.

Of course we want to share our faith with others as our joy and calling as believers in Jesus Christ.  (Matthew 28:19-20).    Looks like a lot of fun to me, to find an established method of breathing an exercise while praising God!  Wish they didn’t use the Hindu words though, as it will be confusing to many who think that Holy Yoga is completely Bible-based.  There are gray areas for sure.  Holy Yoga borrows many traditions of Hinduism.  I hope that the classes clarify this for participants.  But is that enough to avoid it?  Or not find a way to enjoy its benefits?  Perhaps the earthly “gurus” of Hindu yoga could view the adaptation of the breathing and exercises of their yoga traditions as more of a compliment than a threat.  Such is the nature of humanity to not want their invention changed.  I am sure that the major drug companies don’t like competitors making generic copies of their drugs either!  But hey, children often imitate the characteristics of their parents and hopefully a lot of times this is a good thingy!  Imitation can be an expression of flattery, friendship, even love.

Because of the prevailing pull of the world on Jesus’ own disciples and their need to overcome it, Christ petitioned for divine intercession to keep his disciples “not of the world” by being sanctified through the word of God, which is truth (see John 17:16–17 below*).  Believers must guard our hearts in all pursuits with the truth of Scripture, spiritual armor (Ephesians 6), prayer, heeding the conviction/discernment of the Holy Spirit.  Mr. Malhotra quoted the apostle Paul extensively in his post-interview analysis.  Perhaps the apostle Paul just wanted to be friendly as he adopted some behaviors and garb of the people groups he was trying to reach out to with the hope found in Jesus Christ?  Surely we can understand this today.  Don’t we bring a gift a friend would like to his or her birthday party even if it is not our own favorite hobby, taste, brand, or preference?  Or let a co-worker listen to a CD of our music in hopes he or she will enjoy it and share it with others?  Let’s be clear, however, that the  lovely cultural trappings or activities that make life sweet are never equal to the incredible gift of salvation that comes from belief in Jesus Christ.

Please look beyond the rituals, the cultural trappings, the methods of exercise and breathing, the physical stuff of this world as you evaluate the practice of Holy Yoga.  Each believer in Jesus Christ must decide for him or herself, how to apply the real substance of the Bible (and of life for the believer) is the Word and the truth it professes to our daily lives.  Explore Holy Yoga with knowledgeable believers.  Pray about it.  Examine the world view of your particular instructor too.  And if everything checks out o.k., enjoy a really cool exercise/meditation class in the meantime.

JJ

*John 17:16-17 New International Version (NIV)

16 They are not of the world, even as I am not of it. 17 Sanctify them by the truth; your word is truth.

Where to go from here?

More testing, more phone calls

Why did I ask for preliminary results?

Wouldn’t you knowing my next appointment was so far away?

Two hours of seizing.  Every day now.  Of course I asked!

Sigh.

Full report due next week.

The findings of acute toxoplasmosis will be clarified.

Will PCR or the summary mean more antibiotics

To challenge my innards, still reeling from IVs last year?

I cried when I should have been glad

To know there was something there after all —

The test will cost over a grand

And we have no idea what insurance will do.

So for now I wait.

The specialty lab is delivering on time

Hoping the Lab Director talks to my Doc

And none too soon . . .

Hold me Jesus.