dizziness – Jesus is for the Wounded

The TTT

Published on August 28, 2020 by Jesus is for the WoundedLeave a comment

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

Torture, water-boarding and more: Part 2

Published on January 2, 2016January 2, 2016 by Jesus is for the Wounded1 Comment

This story began in Part 1 with how I landed at The Balance Center on the last day of the year for the conclusion of my hearing and vestibular system testing. That was yesterday and I am still recovering . . .

My mood was in a major funk as I was running late for my appointment (struggling to function), trying to hold off any tic attacks whilst still getting ready and out the door. I am back into a 2-part fractionated sleep schedule to try and manage: 1) an increase in the nightly and morning convulsive episodes and 2) getting enough sleep. Usually there are at least 2 nights when the number of hours of unconsciousness barely exceeds FOUR; the night before the appointment was one of them! Eeee gads. But by the grace of God have I survived to tell the story so let us continue!

A very sweet technician named “M” was assigned to walk me through the procedures to be performed in three rooms, each equipped with various test equipment, computers, and some funny-looking masks. I’ll include some stock photos here to bring you into my world:

Generally each part of each test was completed three times. Most of the time “M” warned me about the challenge that was about to happen (except for the water-boarding shock that came later, unfortunately!). In the first room I stepped barefoot onto a cold, 3-walled compartment in which the floor moved independently of the walls that also moved. She harnessed me in with the same number of straps usually employed with bungee jumping! I remembered hearing professional dancers talk about focusing on one object as they spun around doing pirouettes so I decided that would be my strategy all afternoon to avoid up-chucking early in the game. It helped for a little while and I guess I did o.k. during phase 2 (with phase 1 being the audiology testing in October) although the dizziness, uneasiness, queasiness, and feeling of being lost-in-space began quickly. She allowed me to rest a short while afterwards and for this I was exceedingly grateful. My feet eventually started to warm up . . .

I hobbled to the next room labeled, “Rotational Chair.” Holy crap. I was doomed! I never liked the Merry-Go-Round at the playground as a kid and now was the time to find out why. You know what happens to the kids too scared to jump off, right? This is probably why The Balance Center instructs you to eat only oatmeal in the hours before your appointment! So with fear and trembling I stepped into what looked like the anti-gravity room at the Nassau Space Center. The walls and chair in the “space capsule” were black, equipped with even more straps that comprised the harness and seat belt configuration. This time my head was restrained as well with the mask pictured above affixed to my head. Then she closed the door. I was all alone in the darkness.

I wondered about trace specks of mold, fragrance, and other irritants from the travelers who had gone before me. Should I have been wearing my carbon mask all along to avoid trace exposures? My mind was so overwhelmed with the test procedures that day that I would not pull it out until the dire end. For now, I was to spin in circles and watch the little red dot ahead of me, make the line straight using the “Play Station” controllers in each hand, and hope that the fraction of light peeking through the hinge of the door would re-orient me enough to go on . . . My defenses were rapidly breaking down.

balance-testing rotational chair

“M” asked me probably 75 questions total that afternoon, spread throughout all of the test procedures. Had I ever fallen? Hit my head? Gotten dizzy? What about headaches? Migraines? Chemical exposures? You get the idea. In the chair of the Black Hole, those questions made it impossible to focus enough to use the ballerina strategy to keep my act together. The nausea crept up inside me then miraculously never exceeded critical mass to prompt a return of my breakfast. (I took the nausea medication I had with me later anyways! It was the least I could do to calm things down!) I am now getting dizzy and light headed just writing about this experience.

When “M” opened the Magic Door and set me free from my restraint, I slumped forward with my head plunging into my hands. What the heck was happening to me? Low grade tic attacks erupted. I felt listless, unbalanced, disoriented, exhausted, sideways, unsteady even in my seat, like I was struggling to keep breathing (as if someone had pushed the air out of my chest), with increased ringing in my ears and a knife-like sub-occipital headache. The sinus headache had returned as a bonus. I asked if I could lie down. She agreed since there would be supine positioning in the next room and testing anyways. Great. I strained to hold myself together long enough to make it to the torture chamber just around the corner . . .

The usual nightmare met me on that treatment table. Violent convulsive episodes displayed their wretched glory with deep vocalizations that I could not control. On and on with no end in sight they came as I lain face down in the position I have discovered that causes the least amount of trauma to my banging neck and head. My legs were cold. My hands were cold. The room was darkened yet the bright desk lamp next to the technician’s computer was too bright for my eyes just 4 feet away. I struggled to raise my arm to shield my eyes and held on for dear life.

Why was I going through all of this anyways? Would all of this trauma really yield anything useful beyond yet another human version of a “lab rat” experiment to tell me that something was very, very wrong. NO KIDDING SOMETHING IS WRONG!!! I asked for my purse and awkwardly donned my face-mask when I could get my hands to work together enough to do so. Probably 20 minutes passed before the overt symptoms stopped: the ones you can see, that is! Inside I was seemingly beyond repair. This was going to take a long time from which to recover. I wept. The more I write about it, the more I experience a slight flashback of symptoms. I will pause here for a little cry. More later . . .

Continued in Part 3

Torture, water-boarding, and more: Part 1

Published on January 2, 2016January 2, 2016 by Jesus is for the WoundedLeave a comment

These 3-part posts are not for the faint of heart.

I wish that I was not writing them.

This was my reality just 24 hours ago and it bears recording for future reference.

A true miracle usually starts with a hell-of-a-story. So here it is, Part 1:

Many of you gracious, Gentle Readers know that I have been battling a serious illness for just over 4 years. What began as an acute, viral hepatitis became the introduction of an ongoing drama that has now included (alleged) Chronic Lyme disease, mercury toxicity, poisoning from root-canaled teeth, Stage 2 Candida infection and Chronic Inflammatory Response Syndrome (CIRS) including a biotoxin illness. The most wretched of the myriad of symptoms continues to be daily convulsive episodes. And for the last 2 1/2 of these 4 years those episodes range from 2 to 10 hours per day rendering me useless for a bigger chunk of daily living. (See this video for a sample.) Currently there is no end in sight.

My toe clips failed and I fell off my bike on August 23rd of this past year causing a Closed Head Injury with Concussion. While my baseline functioning was only mildly affected, the orthopedic and neurologic impacts were measurable. I hit my left shoulder, elbow, wrist, knee and side of my head on the pavement. Within the next few weeks I received chiropractic and physical therapies then was referred to “The Balance Center” to assess ongoing dizziness, lightheadedness, ringing in my ears, etc. I pleaded with my Doctor to delay the 3 1/2 hour test procedures due to the severity of the convulsive episodes and the fact that the acute symptoms had already diminished. He agreed and we delayed it one month to allow some additional time to heal.

The Balance Center had to get special permission to schedule the appointment after I mentioned “seizures,” for fear that I would not be able to tolerate the test procedures. Wise concerns. My Doctor approved their request to proceed! When the day got nearer I intervened and delayed it another month to October. My Doctor understood my reasoning back then and pressed for me to complete the assessment as scheduled this past week. He stated that there still could be some vestibular issues contributing to the convulsive episodes and lingering symptoms noted above although the latter had improved.

I knew I was doomed. Having worked in occupational therapy for over 3 decades until disabled by this wretched illness, I knew about vestibular testing and rehabilitation. I had attended a weekend training for it many years ago and referred my home health patients to this very clinic! Now it was my turn. I also knew that test devices with moving parts that cause you to lose your balance, spin you around, prompt you to move your eyes rapidly and the like would be hell for me. I did not think I would be able to complete most of it. That is exactly what happened: the first appointment in October had ended after the audiology test portion: a simple hearing test in a quiet, sound-proof booth! When the audiologist entered the room to review the results after I had just stopped seizing, her perfume sent me into more violent episodes. It took a long time to recover from everything as I sat in a cold chair in a long hallway, staff and patients busily walking by . . .

They did the best they could with my atypical “case” perhaps. However, the room with the sound-proof booth was already booked for the next patient and the schedule, the schedule, THE SCHEDULE must go on don’t you know? Such is life in modern medicine these days. It was a very desolate feeling to sit there with my unsupported head banging around with no where to lie down to minimize injury. Gratefully the technician was very nice as she escorted me to my “recovery chair,” and later offered to reschedule me. Reluctantly we settled upon the last day of the year: that was yesterday.

See Part 2 for the rest of the story . . .