When I learned that there might be some pain relief for me if I went to a clinic that specifically focused on headaches, I was encouraged. I have some form of headache or migraine virtually every day. Pain lowers seizure threshold. Neurologists in this specialty have more strategies than typical anti-inflammatory and narcotic pain medications, over-the counter preparations, and the therapies we chronic folks go in and out of all the time, i.e. chiropractic care and physical therapy. I can rarely tolerate pain medication anymore and have used it sparingly my 30 years of chronic pain. Looked to me like there was something more to learn, some hope for a better quality of life, so I asked my Doctor for a referral to a headache clinic. What would I have to lose?
My dignity. Last Monday my dignity took a major hit at another major medical center. Here’s the raw footage from a message that I sent to a friend when I was still in shock.
Had a very odd, traumatic, and disappointing day at the headache clinic at the CC today. Gotta get this out. The MD Fellow with a couple months of experience listened to me, made a new HA diagnosis along with med ideas to try to manage them. This could raise the threshold for the convulsions, providing relief for both the episodes and HA pain. I have a HA every day and both HA and convulsions have been worse. Tweaked my diet recently and at least the HA came down enough to make the trip: 4 hours each way. The building was old and musty. It rained during half of each travel period. I had 2 hours of sleep Sunday night. I was ripe for an episode at some point; short tic attacks in the truck on the way out. Still was hopeful. The telehealth appts with the first 2 CC specialists 2 weeks paved the way for this appointment.
Then the young MD left to review my case with the staff MD; they both returned. We went in person so I could have a more comprehensive neuro exam. All the 2nd neurologist had me do was demo 5 simple range of motion exercises. A disastrous seizure attack ramped up within a minute! Thankfully I could blurt out to get Steve as she tried to coach me on breathing ex in a childlike way. I blurted out that I can’t breathe! She continued. I asked to lie down. The high velocity, repetitive, involuntary movements were injuring my neck n back. It’s terrifying and dangerous. SHE SAID NO! I could not believe my ears. Steve picked me up, my legs hanging, arms curled up, and put me on the exam table. I was able to get into my recovery position that protects my neck. Screams emerged that I cannot control. The pain seared my spine, head, extremities. Then they left. 4 times in this visit I asked to have the door closed (for privacy). 3x they said no so they could hear me if “anything happened.” Like what, I thought to myself. It was already happening. Steve stood nearby for my safety. I heard people walking by in the hallway. This is a HIPPA violation. (Correction: This actually violates their Patient Bill of Rights, posted on the CC website.)
Steve and I found ways to develop a plan. There were 3 violent episodes in total over an hour. The Med Asst came in once (as id’d by her voice, my eyes were pulled closed) and nurses after the 3rd round. I asked for the Doc. My tongue was thick and protruding out of my mouth, pulled to the right. My right arm dangled lifeless towards the floor; left arm curled and tucked in a flexion posture to my chest. This is mixed hemiparesis. But the young Doc had already left the building. The nurse said if it didn’t stop I was to go to the ER. How would I get there like that, I wondered, struggling to communicate and trying not to chew my tongue or trigger a rebound reaction. Finally I could ask Steve to turn out the lights. He put Prednisone in my mouth despite the snot and tears staining and stinging my face. I was able to ask for ice. Putting ice on the back of my neck broke the pain cycle worsening the episode. Like and overfilled balloon losing air, my body started to calm down. It took about 10 minutes.
The nice nurse had gotten a wheelchair. She figured I would be too tired to walk. I blurted out a thank you. I think she had left when I could tell Steve that I was WALKING OUT OF THERE under my own power. Any shred of dignity required it. I grieved so much on and off through this horror and trauma before I could finally sit up and stay up. Time to use the bathroom, wash my face, and get out of there. Soon I was gingerly walking out of there with all parts moving, albeit weakly. There was no one in the hallway. There was no one at their desk. We walked out into the dusk and rain.
Somehow during the first episode I was able to ask the young Doc to write down her recommendations for me. I’m glad I did. She hand wrote on my summary note only wrote 1 of 5 ideas she had for me. I was able to reconstruct the rest of it on our way home. The older Doc must have been the one to write a different, generic diagnosis. Only 1 recommendation was given and it was for a treatment program at CC that I already did at the Mayo Clinic. It made no lasting impact. Steve and I concurred that the older neurologist was of no benefit. He has seen this discounting behavior before. He said it’s why he jumped in to help me while the Doc did some chanting thing.
I’ll message the young Doc tomorrow via the MyChart online portal for her rec again. Hope she can do so for me. I went there for help with HA pain. I have no meds I can tolerate for pain when things get bad. The modalities help some. But with my chiro out with COVID, reg Doc/chiro rescheduling 60% of my appts due to his busy practice, difficulty getting to PT, and increased episodes, I need more tools to lower the pain threshold. The headache-specific tools could be a game-changer. Then I can go back to natural stuff. And be out of bed, able to function more again. Funny how I’m at the book of Job again as I continue to read through the Bible.
I spent the next 2 days largely bed-bound, struggling to function at all. The young Doc returned my message with the same diagnosis and recommendations as the older Doc but did add the name of the 2 classes of medications she had recommended. At least there was something new to pursue with my Family Doctor. I started an herbal remedy for headaches anyways and at day 5, the daily headache had already started to improve. But I still wanted to see their report. Turns out I was in for another shock when it became available 6 days later.
The Progress Note that got posted in my patient portal and I anticipate will be sent to my Family Doctor is a FABLE! The report lists so much false or inaccurate information that I wonder who they are talking about? Numerous tests were never completed but there are results listed for them! Below is my responses from the “Request for Amendment of protested Health Information” filed today in my patient portal on the CC website.
The Progress Note contains falsified information. The following tests WERE NOT completed:
REVIEW OF SYSTEMS: None of these questions were asked. 7 mm kidney stone, intractable back pain, arthritis, significant sleep disturbance with Mild Sleep Apnea denied or omitted.
PHYSICAL EXAM for rash (present on both legs), cardiovascular & lungs (no stethoscope exam), vascular (no checks).
CRANIAL NERVES: No exam completed. No sensory testing, venous checks. My tongue protruded to right during the convulsive episode (in your office).
MOTOR EXAM: No MMT completed of UE or LE. Right UE hung from table during convulsive episode.
SENSATION: No one touched me except for vitals.
CEREBELLAR: Convulsed for total of 60 minutes. No finger to nose, heel to shin, rapid alt movements completed.
REFLEXES: All values are false. No testing completed. Neither Doctor saw me walk in the room nor had me do toe or tandem walk.
What does the current information say that you believe is inaccurate?
The only PHYSICAL EXAM that was completed was an upper extremity range of motion which was WNL, interview, and vitals.
Multiple false values need to be deleted. We drove 4 hours each way to have a comprehensive neurological exam completed and all that was done was an interview, observation, and BUE AROM test. No one touched me to do a physical exam of my heart, lungs, reflexes, cranial nerves, strength or other tests. Neither Doctor completed the gait tests noted nor saw me ambulate in the room. Neither Doctor reviewed my Headache Scores with me. When the BUE AROM test triggered aura then speech changes, searing head/neck pain, tics then a convulsive episode, I struggled to ask to lie down. Dr. K (the older Doctor who I finally got to see her name when it was stated on the PR) said “NO.” Whiplash re-injury followed from severe involuntary movements. My husband picked me up and put me on the exam table in a position so I could brace my head from further injury. Dr. K chanted to breathe deeply. Sometime later my husband put 60 mg of Prednisone in my mouth. I do not know when the Doctors left. Later a nurse checked on me and brought ice for the back of my head/neck and the episode stopped completely within a minute thereafter.
We could have done this verbal exam by tele-health without the trauma of this visit, extensive travel, and false report. My “After Visit Summary” includes the diagnosis of Chronic Nonintractable Headache, Unspecified Headache Type. This diagnosis is not on the Progress Report that I anticipate is going to my family practice physician, Dr. J, for continuation of care. Please add it as an addendum.
Sigh. Big sigh. I have no idea from where they got the physical exam results that are listed in the Progress Report. They are fabricated, false, wrong. The Request for Amendment of Protected Health Information can take 60 days to receive a reply. I looked up the Clinic’s HIPPA policy and Patient Bill of Rights and Responsibilities. Looks like my privacy concerns fit more the latter and that I would have to contact an outside agency to file a complaint. It’s too soon to consider such action. I’ll see what the Request yields. Not sure if I should contact the young Doctor or not. She was actually very professional and listened to me. At the Mayo Clinic, the “MD Fellow” residents are able to file their own report in addition to the supervising physician. At CC, only a report with Dr. K’s signature on it is filed beyond the Visit Summary you get walking out the door (that only contains a preliminary diagnosis, single statement of recommendation, and information I had provided to the patient portal). The gross inaccuracies on the Progress Report from CC renders it useless in my humble opinion.
We’ll see what my Family Doctor says. He is a brilliant diagnostician and loves to review special reports. He’s just too busy most of the time to dig into the differential diagnoses of my case sometimes. Looks like the Docs at CC were also so they made it up. Another healthcare faux pas for sure. Oy vey. JJ
In Part 1 of this story, I disclosed a horrific scene that has plagued my mind and body for decades. The only way for the incident to have been true and for me to have survived without going completely MAD, is by the grace of repression. It’s a coping mechanism of our mind that we have to deal with severe trauma lest we fall into addiction, self-destructive, catatonia, mental illness, homicidal/suicidal behavior, or worse. Even though we may not “remember” what happened, the mind and body never really forget and for me, the stored memories of a fateful day has been revealed in bits and pieces over a very long period of time. A strong image, smell, sound, or new traumatic event can trigger a chain of events that brings it back and more recently for me that trigger has been convulsive episodes. The episodes revealed the truth.
A waking seizure attack comprises convulsive episodes for me that are not epileptic nor psychogenic. The seizure comes virtually anytime and, less than 1% of the time, a memory has gotten unlocked underneath it before the episode ends. It’s as if my brain freezes and goes back in time accompanied by a feeling of terror so intense that my brain feels like it is on fire; I cannot stop the screaming. There is horrific pain, gasping for air, and thoughts that slow waaaay down. An observer would describe it as a seizure followed by a nearly catatonic state when I cannot move or speak or breathe. Limbs often shake, one violently flapping then the other, then both legs involuntarily move very rapidly together-and-apart like that of a child in an autistic fit of sorts. I am awake; my eyes are closed but eyelids twitch or squeeze as if squinting (in one eye or both). I am always aware of my surroundings although I may or may not be able to speak when it stops. This electrical activity of my brain-on-fire has had the power to unlock images and scenes from my past that fit what I already recall in my history. It’s as if the terrifying emotion that I was unable to express at the time of the incident is finally released to the light of day. It is not fake. The memory always fits a scene that I do recall from my past, much like what happens when you finally locate a missing piece of a puzzle. A puzzle with edges fried by fire, that is. Finally you can see the full image albeit tainted by the horror of what you are now seeing more clearly.
I concluded Part 1 with two methods that my mentally ill father used to try to get me to forget what happened at his home when I was a pre-teen. Years later I would come to understand that he was 1) using methods that he probably had tried on himself to manage the thought disorder of his own paranoid schizophrenia, 2) experimenting with mind control methods popular in the fields of psycho-cybernetics and psychology of the 1970’s, 3) drinking a lot of wine, 4) not hiding what he was doing most of the time (i.e. there were witnesses who have corroborated pieces of every scene that I have recalled), and 5) trying to get me to forget what happened, perhaps knowing the damage that trauma in his own childhood had done to him. I believe that his mental illness was a consequence of ritualistic (i.e. continuous) verbal and physical abuse by his mother/passive father until he found a way out of the home as a young adult by marrying my Mom. But RoseAnne was fleeing her own abusive father/passive mother. Their marriage was doomed shortly after it started as abusive patterns repeated themselves between them, spilling over into the lives of little Julie, Michael, and Robert. Eventually my Dad ran away, came back, then ran away again for twenty-seven years. What a mess.
Sadly when those really bad things happened to me at his home, he wouldn’t know the difference between how to help me and how helping me ended up hurting me even more. To get me to forget a horrific murder scene, the maiming of his pet German shepherd in a satanic ritual, and the sexual abuse by two women ALL DURING THE SAME DAY of a visitation to his home, my Dad tried used a method of instilling intense FEAR. He wanted me to forget what happened by attempting to cover it with other intense emotions, images, and threats. Forget trying to talk about it!!! (I am aware that there are witnesses who were in the house at the time who have either been sworn to secrecy or were under the influence of so many drugs and alcohol that they have some level of amnesia as well. Maybe something will trigger their memories one day? Maybe one of them will try to find me through this blog?) My Dad was wrong. Subjecting me to more fear compounded the torture, the trauma even more. Eventually I remembered the most important parts of the story. I wrote about it to release it’s power over me and highlight the power of our Lord to overcome my dark hell on earth.
I describe one method my dad used to instill fear in Part 1: nearly drowning me in our backyard pool. The damage to my neck has continued for my entire life. Another method he tried was injecting me multiple times with a psychedelic drug that left pock marks on the inner surface of both of my elbows. Perhaps he thought that the altered mental state created by the drug would cover my memories? He was right: I didn’t recall most of it for two decades. The blisters that appeared right afterwards then later the scars raised repeated suspicion from our family doctor, sure that I was shooting up drugs but hey, I was just a kid at the time. I still have the scars to this day albeit distorted by the effects of aging. Another family member disclosed that some people in my dad’s circle of people used hard drugs in addition to satanic rituals such as seances; sadly he won’t tell me anything else, alluding to needing to protect his wife who I believe was also present. The seances were very likely held at a table right in front of the couch to which I retreated during that fateful day at his house. This exposure to the supernatural world opened me up at a tender age to demonic influences of the occult (that would be compounded by teenage curiosities with a Ouija board). The abuse, the occult, the psychedelic drugs, and perhaps even changing body chemistry of puberty created a lock-down in my mind and body that most people would never survive. I know. It took me a year in a healing prayer ministry to start to understand the power of the demonic and how to stand firmly with the power of Jesus Christ. And as I write this, I am the only surviving member of my immediate family, all tainted by various forms of evil known as abuse.
Three More Methods
For most of my life I have had difficulty falling asleep. It used to take me up to 90 minutes to settle down enough to finally drift off to sleep or rather endure the difficult sequencing required to let go. The problem? Intensely fearful thoughts to the level of waking night terrors at times. If I’d ever had a nightmare more than once, my mind would often recall them again and again at random while I was trying to calm my thinking down enough to be able to sleep. Sometimes a scary scene would continue getting worse and worse then other times it would just keep repeating itself like a scene viewed from a broken piece of film flapping in an old theater projector. As I grew older I learned a technique of trying to re-write the dream or images to a happier ending. Sometimes it helped and sometimes it didn’t. Eventually I passed out anyways from mental exhaustion. Most of the abuse that I experienced in my childhood happened either at night or when falling asleep. No surprises here that I would need to work on this problem for most of my adult life: dealing with night terrors and waking nightmares, terrifying dreams overnight, then flashbacks of abuse.
Another problem was the black-and-white flashes of lighted psychedelic designs that spun in my mind’s eye or were thrust near-and-far at quick intervals before stopping. These occurrences happened every single night as I was trying to fall asleep, somewhere between the first and second stages of REM sleep. I thought it was normal. It was as if someone was focusing the beam of a flashlight on a toy pinwheel or a spinning saucer 2 to 3 feet in front of my face. The bedroom would be dark and my eyes closed after lying down to sleep but the lines and designs in my “mind’s eye” were as clear as a pen and ink drawing on bright white watercolor paper. There was no way to stop these images from coming to mind. They happened every single night of my life for decades. Even though I had taken psychology classes in college and worked many years as an Occupational Therapist in the mental health field, it didn’t register to me that this nighttime behavior wasn’t normal until I finally started getting counseling in my 40’s specifically for this type of abuse. Ritual abuse occurs when a person of influence uses a repeated, harmful behavior to control another person for the gain of the abuser, over an extended period of time. It can be spiritual, demonic, or other forms as well. Flashing black-and-white images in front of my face when I was falling asleep is the third method of ritual abuse that my Dad used to try to get me forget, to try to control me and my thought processes. (It’s actually related to a twisted form of psychocybernetics invented by Maxwell Maltz in the 1960s and described here.)
I cannot explain exactly when or why the nighttime “flash-treatments” began. I don’t know if my Dad said anything when he did this or when he eventually stopped them. How many times did it take for it to become almost permanent in my mind? There was enough repetition to cause harm. After I came to faith in Jesus Christ and about a decade of therapy, the images slowed then stopped. I don’t see them anymore when I am trying to fall asleep. Praise the Lord! In examining all of this, I realized that my dad’s use of strange rituals that were frightful to me as a child were not isolated events. In Part 1 I described how my dad tried to help my brother Mike via messages of his voice on a tape recorder that he played on a special speaker under his pillow as my brother was falling asleep. Those messages were intended to help my brother’s self esteem. Decades later Mike would tell me how much they damaged him, that his Dad must have thought so poorly of him that my dad had to repeatedly tell Mike via a cassette tape that he was a “good boy.” Why didn’t my Dad just say it to Mike’s face? Tell Mike that he loved him? Since I do not recall much affirmation from my Dad as the oldest sibling (who actually looked like a member of my dad’s family; Mike did not and this was an important point that my Mom told me many years later), I doubt Mike got any affection at all. But how could he? My father had none to give . . . Such realizations ultimately helped me to forgive my Dad and paradoxically paved the way to remembering more of my past, good and bad.
Perhaps this all sounds too crazy to believe. Maybe for you but not for me. My Dad’s experimentation didn’t end there though and it would be sprinkled in some manner throughout the years that my Dad was still around. One night when my parents were still together, my Dad had taken the crucifix down from the wall in my brothers’ room to make some kind of repair. When he didn’t come back with the cross right away, I snuck down the stairs to see what he was doing. I believe Mike followed sometime thereafter but I am not sure. The lights were on in the stairway but the basement was very dark, which seemed strange to me. The stairwell was placed in the middle of the basement area of our ranch home and my Dad had created two rooms on either side of it: a laundry room on one side and a workshop on the other. There was no door on either room so you could travel from one to the other underneath the stairs between the two rooms. The walls were a white stucco over concrete, the floor was poured concrete, and the entryway into each room was made of brown paneled walls with a light-colored wood trim around the edges. I spent a lot of time in both areas, fascinated by all of the tools in the workroom.
I slowly peeked around the edge of the paneling into the doorway of the darkened room and was frightened by the face of my Dad lit up by candlelight. What the . . .? He had a look of surprise on his face that I had come down there; evidently I was very quiet sneaking down the steps, dressed in my pajamas and socks. I came around to the width of the opening just long enough to see the cross propped up on a wooden table in front of the mirror of our old bathroom vanity (affixed like a cabinet to the side of the wooden staircase). The Jesus figure and front of the wooden cross shined in the glow of the candle held by my Dad. He was looking at the reflection of the cross in the mirror and doing something that I knew was weird and scary and that I shouldn’t be seeing at all. I don’t know if my Dad made his usual “Yaaaaarl” sound to get us out of there and back upstairs or if it was my sheer terror that caused me to turn and escape as fast as I could. Who knows where Mike was in all of this?! The rest is a blank slate in my memory. It was at least a day later before the cross was back on the wall in my brothers’ room. Seeing that nail hole in the wall without the Catholic cross hanging there sure was creepy until then. I don’t recall my Dad or anyone else ever saying anything about it ever again.
The fourth method that my Dad used to get me forget became the seed of agoraphobia that would plague me my entire life. Sure, it’s normal to be afraid of spiders. What is not normal is experiencing a fear so terrifying that you KNOW you will DIE and have physical symptoms that appear to be fatal when faced with anything larger than a tiny bug on a bedroom floor. Then there are the nightmares for days afterward seeing one even in a movie or a TV show. The fear never, ever goes away or gets better with exposure, talking, desensitization techniques, or whatever anyone tries to do to help me get it to change. I know, I have tried. It’s just not that simple especially when the origin for me was the deliberate use of an already fear-mongering creature to scare me so badly that I would forget the trauma somehow associated with it. I am not even sure how the association was made, just that I knew I would DIE if I remembered what happened that fateful day at my Dad’s house; the phobia reinforced the amnesia. Layer it all with demonic oppression where satan himself uses the fear, the memory, the remembering, the telling, the physical symptoms against you with lies and a worsening of all associated types of pain. They call it spiritual attacks. Perhaps the Lord allowed him to inflict me with convulsive episodes all these years? Perhaps it’s now a tool to uncover the truth of what happened so many years ago? To let me know just how bad the scenes were that it would take thousands of profound electrical misfirings of my brain to uncover it? Talk about a lock-down . . .
Maybe you recall the scene in first Home Alone movie where an 8-year-old boy named Kevin McCallister was accidentally left home alone then tried to outsmart a pair of thieves? One of the booby-traps he sets for them includes letting loose his pet tarantula. I cringed in horror as I knew what was about to happen at some point when the spider met its intended victim. One of the bandits screamed in fear as the spider crawled on his face when he was lying face-up on the stairwell inside the home. Granted probably most of us would scream holy terror as well! But we would not go catatonic in an effort to avert death. A true phobia is not a rational fear, not a moment of screaming that resolves thereafter. My Dad put the large spider on my face to get me to forget the trauma of three horrific scenes of terror in a single day. Equally as traumatizing as the huge spider was the image of black beady eyes of that spider staring at me. I really cannot say anymore right now. It’s still quite disturbing to put all of this together here. This realization only came to me recently and I have just begun the work of unpacking it. The effects of using fear to control me has resulted in lifelong behavioral anomalies, irrational fear, supreme difficulty studying pests and insects as a Master Gardener, avoidance behaviors, nightmares, and more. That is what a phobia does to a person. It starts a survival mechanism of the mind then continues despite its harm. And in the end, it did not get me to forget forever what happened, what I witnessed. Eventually I did remember. In the end, it just inflicted even more harm.
A fifth method was hypnosis although I don’t think that it was applied directly to me. All 3 of us kids were in my Dad’s workroom with him one afternoon when I don’t think my Mom was home. She was often at church doing work as President of the Altar Society at St. Cletus Church. I remember my Dad sitting one of my brothers on a metal stool, the one with the red vinyl top on it, and dangling a chain with a pendant on it in front of his face. My Dad instructed him to keep his eye on the pendant as it moved from side to side. My other brother and I were watching intently as my Dad went through some kind of sequence in a slow, low, calm voice. “You’re getting sleepy” or something like that. I don’t recall if either one of them fell asleep or changed posture in any way; I know that I was able to look around the room shortly thereafter, feeling like it didn’t affect me at all. My other brother was next. I didn’t volunteer. I was curious but also just old enough to know that there was something not right about what my Dad was doing with us. I wish I could remember what the goal was, if there were any special instructions my Dad tried to “suggest” under the influence of hypnosis but I do not. I may have asked what it was used for? Funny how a child is curious about what he or she is seeing a parent do even when it is exceedingly harmful and never should have happened. At a gut level, this experience made me resist the offer of hypnosis from every therapist I have had in my life who wanted to “help me” remember the forgotten years of my childhood. No, no, never!
We should never experiment with mind control techniques on another person when we are not trained to do so and I believe rarely even if the person of influence is trained. The Lord will bring back the memories in His own way and in His own time when the person is ready for them. More importantly I can see no reason for even a trained person to use mind control techniques like hypnosis on a child! It doesn’t matter if it worked for someone else. It’s not the same thing to use a method or object or saying or rationale for mind control over someone else especially without the consent of the other person. A child cannot give such consent as he or she cannot understand the potential risks. I also disagree with a parent providing consent for a child to be hypnotized. If what anyone is doing runs the risk of violating another human being’s right of consent at any age then it may construe undo influence and potentially abuse. We must filter our actions as an adult with what is morally good, what is right, what is fair, and what our Lord Jesus Christ instructed in His Word for how we should live; consulting mediums and mind-altering drugs and ritualistic sayings/prayers are taboo! Tapping into the unconscious mind runs the risk of inviting the supernatural world of which satan rules. Satan only seeks to deceive and destroy. Don’t try to get ahead of God! Please do not yield to “whatever works” Gentle Reader!
Stated another way, we must not “experiment” on another human being, especially a child, hoping for a certain outcome when we can easily run the risk of hurting him, her, or even yourself and your relationship if we don’t get it right. How do we know we will get it right? Neural retraining and the like are popular now in the treatment of Non-epileptic seizures and many chronic illnesses these days. If you must use mind-altering methods, please choose degreed and certified professionals with proven track records and decades of success. Further, I contend that a parent must never treat his or her own child even if degreed or certified in a given technique. My Dad was one of the most extreme examples of the damage that can be done when this happens. My Dad inflicted immeasurable harm that damaged me and my brothers. Although mentally ill, he was still responsible for his actions as we all are. Knowing that he was mentally ill, struggling to overcome it, and abused as a child helped me much later to forgive him and begin to heal. If my Dad did not repent and come to faith in the Lord, Jesus Christ, then God’s Word promises that my Dad will punished one day by a righteous God. He said that he came to faith in Jesus and I hope that is true; the Lord’s mercy and grace will cover him. I don’t like to think that my Dad will face eternal damnation; it’s just not for me to worry about as I focus now on what I have learned along the way and even some good memories that came forth with the bad ones. We did get to make our amends of sorts in 2011 and for that I am very glad, at peace. Further, I have come to understand that everything that happened to me was ultimately a consequence of a larger concept called “sin” and of living in a fallen world. This world is laden with evil led by satan himself. My ritual abuser willfully opened himself and even enlisted the power of satan and his minions not knowing that ultimately satan comes to destroy: he will not help you control your mental illness nor the unruly behavior of 3 innocent children! Sadly, my Dad battled mental illness his entire life.
For me it was not the same thing to know what happened to me as it is to become free of the impact it had on my life. The former is exceedingly painful. The latter is freeing. It’s not the same thing decades later to have a seizure disorder of unknown type and 1) have Doctors claim then that it must be psychological, for some kind of personal gain (yeah right, how sick is that?!) vs. 2) the electrical activity of seizures jarring locked-down memories of horrific trauma. Thank the Lord that I did forget such horrific trauma so I could survive, focus as much as I could on living. Years later it was explained to me that I didn’t have a seizure when the abuse occurred so there’s no psychological reason for me to have seizures now. I had flashbacks of really bad things for twenty years before the onset of convulsive episodes eight years ago. Each memory came back to me when the Lord ordained the timing, when I was ready to handle more of the truth. It took time to work though each nasty piece, lay each one at the foot of the Cross, and figure out how to go forth after reclaiming the full picture of a mixed-up, dysfunctional family, a once mixed-up dysfunctional Julie.
I just wish that now that I can see how the Lord used the seizures for some good in reclaiming my past that they would stop already! I still deal with numerous abnormal lab tests and scans that all could be contributing to the convulsive episodes and tics, confirming an organic cause. Years of treatments have alleviated, changed the pattern of, reduced, and some days even stopped episodes. The latest contributing factor is Autonomic Dysfunction. This diagnosis confirms why vagus nerve stimulation techniques have helped me so much, particularly those of the parasympathetic nervous system. It’s no surprise that it is the opposite, sympathetic nervous system that gets revved up when abuse happens and, for example, would have contributed to decades of difficulty falling asleep at night. My mind and body are more calm now in general than ever before. So I guess I can say that these nine years of battling serious illness has become a serendipitous opportunity to free my life from the various things that trauma and the serious illness itself did to me. I have a long rap sheet of medical problems but my spirit is lighter now than ever before. Good things have happened! This is true even though I still have tics or episodes virtually every day. It’s just taking a long time to find the CURE for whatever is their CAUSE. Lord willing, one day I will be healed!
In the book of Genesis, Joseph professes to his brothers that sold him into slavery the following:
You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.
Joseph’s brothers were jealous of a dream he had shared with them that one day they would serve him even though he was the youngest member of the family at the time. They faked his death! In the end Joseph survived, endured tremendous trials and years later, rose to fame in Egypt as second in command of the nation that saved the lives of many peoples because of his inspired leadership. When his estranged family came calling for help, Joseph ended up saving their lives as well in addition to reconciling with them. All was restored including his relationship with his beloved father who feared he would die if he lost another son. He didn’t. He gained a son he thought was once lost.
My Dad did very bad things at least partially knowingly what he was doing, akin to those of Joseph’s brothers. Then as the Lord showed me the abuse that my dad had suffered, our familial patterns of alcoholism and mental illness, and brought me to a saving relationship with His son, Jesus Christ, I was able to move from hurt and anger to forgiveness. That forgiveness had many layers as more truth came into the light and as I got to see him after TWENTY SEVEN years of estrangement from our family. I still didn’t know back in 2011 what I know now. The serious illness that developed into daily convulsive episodes came at the end of the year 2011 and after my dad had passed away. I cannot go back to my father and ask him about what has been opened up to me most recently. I simply have to trust the Lord’s timing in how all of this came together, put any pain at His Cross and leave it there.
Recently an expert instructed me how the Lord divinely sequences every detail in our lives. My understanding of this sequencing has not been the same in the past as it is now. I may weep in the moment but it doesn’t last very long. I try as best I can to live around this scourge, my thorn in the flesh perhaps. It is my firm belief that our God endorses and redeems everything we endure in this life as we prepare, we mature for our eternity with Him. Nothing that happens in our lives is wasted: not the good, not the bad, not the ugly. Nothing is hidden from our Heavenly Father either. He sees and He grieves for our suffering. He rejoices in our victories! I know that He will not only make all things right and new one day but also bring justice and reward for the faithful. The truth will come into the light. Believe it Gentle Reader! I do. JJ
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.
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
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