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

The next big thing

It’s a new year so perhaps it is appropriate that the Lord has shown me some new hope for overcoming the serious illness that I have been battling for the last 6 years.  Prepare for another brain dump!  Are you ready?

cranial nerves, TMJ, vasovagal, seizures, epilepsy, non-epileptic, convulsions, vagal, nerve

An Ears, Nose, and Throat Doctor (ENT) suggested to me that I might look into vagus nerve issues.  He said it might be related to why I had a seizure attack in his office after he put a long-handled mirror down my throat during his examination.  As soon as I stabilized 20 minutes later, I pulled out my smart phone and Googled what I would learn are called “vasovagal seizures.”  Holy cow!  There is a lot written about this topic!

The vagus nerve originates in the medulla oblongata of the brain stem and extends through the neck to the heart, stomach and other organs of the body.  It comprises the “parasympathetic nervous system” which is the opposite of the body’s “fight or flight” response of the sympathetic nervous system.  A vagal nerve stimulator (VNS) can be inserted into the body with an electrode wrapped around a branch of the left vagus nerve in the neck (not the right as that one travels directly to the heart).  The VNS sends tiny, intermittent electrical impulses to the vagus nerve to calm the heart, prevent fainting for persons dealing with syncopal episodes, depression, and even seizures.  A person with vasovagal seizures can place a magnet over the VNS when he or she senses an “aura” or sense of impending doom that an episode is imminent.  (I understand this phemomenon well.) The electrical stimulation, once correctly calibrated for the person, can help prevent this specific type of seizure.  No medication is needed although some patients with vagus nerve dysfunction and fainting spells take beta blockers (or herbal alternatives) to help manage the related cardiac symptoms.  (If accurate and not affected by the shaking, my blood pressure dropped significantly during a severe episode recently.)

Forgive me if I don’t have this exactly right as I am new to this topic!  What fascinates me is that persons with vasovagal seizures can present with some of the same symptoms and triggers that I have experienced:  ringing in the ears plus convulsive episodes after  noxious sensory stimuli and needlesticks.  Gratefully, I do not have fainting episodes; I have suddenly fallen asleep when the episodes occur in bed.   But wait, there’s more!  Because there are at least 2 branches of the upper vagus nerve that run near the jaw line, some dentists have suggested that the vagus nerve plus the trigeminal and other cranial nerves (as shown above) may be affected by dysfunction of the temporal mandibular joint (TMJ).  I have suffered TMJ pain for years after a double whiplash injury when in an auto accident in 1996.  I never was able to work full time thereafter due to my injuries.

The upper branch of the left and right vagus nerve runs along the face to end in a couple of points on each ear, respectively.  It seems plausible to me that I could use touch pressure, cold stimulation or even medical grade magnets to stimulate these points.  (Google vagus nerve stimulation for more ideas.)  It also seems plausible to me that any tight muscles or fascia of the face could press on these nerves contributing to distraction of the TMJ joint or impairing the function of the nerves affected.  “Occulsion” of the TMJ (which also includes disc displacement) can lead to a host of symptoms which I have experienced including headaches, pain, clicking sounds, swallowing and possibly sinus issues.

Wouldn’t you know but there are dental professionals who specialize in TMJ Disorders who have had success using special dental positioning appliances in reducing the tic-like symptoms of persons with movement disorders (e.g. Parkinson’s or Tourettes Syndrome).  They use ALF and Geld devices for the upper and lower jaws.  Holy cow again!  Who knew that a specially crafted mouth splint, designed to raise, displace, or widen the palette and jaw bones of the TMJ, could affect the brain so profoundly?

Well I kinda did.  I heard about this a few years ago related to TMJ and have been following one prominent dentist in this area of specialty for a couple of years.  My medical doctor/chiropractor referred me to a TMJ specialist out of town a few years ago.  For less money, my husband and I decided to have our local dentist fabricate a TMJ splint for me; later the dentist fabricated an anti-snoring mouth guard.  Both could have helped different aspects of this serious illness but they did not.  I was unable to tolerate wearing either appliance and would choke on them when the seizure attacks came at night.  I gave up.  So sad.  Years passed and nearly a thousand more violent convulsive episodes.

Did I tell you that another trigger was to simply eat food?  I thought it was a reaction to the food that I was eating, paid for allergy-type testing and retesting, changed my diet many times to try and end the episodes that often started at the kitchen table.  Many times my hubby had to carry me to the sectional or bed when I could not walk on my own or had  collapsed.  Whoa.  What if it was the very action of chewing that was triggering them?

The vagus nerve and the TMJ issues appear to me to be related.  The video above gives a profound example of how changing the positioning of the jaw can affect neurological symptoms of tics.  This is big news.  What I will do with this information is still unclear.  I favor starting with low-tech mouth appliances before the vagal nerve stimulator surgery, if indicated.  I have begun researching the literature, interviewing Dentists and Oral Surgeons in this field, joined a few discussion groups online, prayed, and talked things over with Steve.  For the VNS I would need to find yet another neurologist to see me.  Proceeding with formal assessments and treatment for the dental appliance will require regular travel to offices out-of-State and thousands of dollars in expenses.  Very likely, insurance will not cover most of the costs; not sure aboit the VNS.  But what if it is a functional, positional issue causing the daily episodes? A VNS would moss the root cause.  Something good seems possible.  I have hope again!

There is much to consider.  In the meantime, there are simple TMJ tests and exercises in addition to vagus nerve stimulation techniques that I found online that I have already started experimenting with at home.  The results are promising.  Yeah God for YouTube videos!  I am so grateful to have resources when I am searching for them in the middle of the night . . . with things to try when the seizure attacks are worse.

Yeah, I am up again late at night once again.  By the way, the parasite treatments appear to have helped some with the exception of getting blindsided by significant triggers (like having a blood draw about 2 weeks ago that triggered 4 hours of non-stop seizures, resulting in another trip to the emergency room and sigmificant increase in head and neck pain, tinnitus, ugh!).  One expert has suggested that improving the alignment of the facial/cranial/neck structures can help overall head and neck drainage; this could include everything from sinus mucous to lymph, blood flow, and cerebral spinal fluid.  Better drainage would surely help my detox protocols work better that and perhaps prevent or resolve the multiple infections I battle that may be affecting my brain, my central nervous system.

We have really got to figure this out folks.  Lord, is your hand in this next big thing for me or not-so-much?  I am hanging on . . . hanging on to you.  Will you graciously lead Steve and me as to whether or not we should proceed?  We need you now sweet Jesus.

I’ll let you know, Gentle Reader, the answer as it unfolds.  I know that my Lord will lead us!

JJ