It’s 2 days before we may be sending off our stunningly beautiful, 2 year old German shepherd dog to her new home and I am struggling with the whole thing. She came to us probably too soon after our 13 1/2 year old Elle GSD and beloved fuzzy family member had to pass on. Elle was deathly sick so it was the humane thing to do to put her down. Steve and I both cried. Then along came Luna on a rescue website 10 days later and we were off and running in a caper that had more surprises and trials than we could have ever imagined! Now all I can do is sob some more when I think about where we have landed with our furry family members. Soon, both will be gone.
I am struggling again and largely bedridden most days. The drainage from chronic sinusitis is both gross and bloody; nausea has been profound and triggered by a recent ’bout with a cold then the flu. The convulsive episodes are stranger now, with an aura of spaciness leading into them that is atypical for me. Rescue remedies leave me with massive fatigue, if I have not already passed out when in bed. And shaking episodes of up to 20 minutes make it difficult to function even if I do happen to be upright when they occur. What keeps me from despair in this current downward trend is that there appears to be a causative effect of an allergy to our German shepherd dogs. Only as Elle was dying, inactive, and no longer shedding did all symptoms get better for about 2 weeks. My improvements continued as I removed older rugs and cleaned all of her favorite places in our home. And now as Luna enters her 3rd week with us, her gorgeous long hair and dander dropping everywhere, my health has headed into a significant decline. But I have never tested as allergic to dogs! What could be going on?
You know I share all this stuff because writing clarifies my thoughts and research findings. Perhaps there will be a secondary benefit of a fellow sojourner with chronic illness finding something in my story that resonates with him or her. More importantly, Gentle Reader, I hope you see the Lord’s hand working for good and His glory through the seemingly most impossible of circumstances. Ten years of virtually daily convulsive episodes and reactivity is hell to endure. I have tried to live around and through the shroud of pain and suffering, without losing my mind or life itself. Life’s lessons rarely come from the good times. Even so, my Lord and Savior, Jesus Christ IS GOOD, has a plan and a purpose for every paw print traipsed along the way: hers, hers, and my own. What if Luna is a gift from the Lord to show me how to get well? Would the tears of sorrow from losing one more thing give way to joy if I gain so much more in the end? My husband and I both are about to lose a fun, furry companion but he may re-gain his life partner, his wife! My activity level and health had dramatically improved during the week before we got Luna. What if I could be almost fully restored?
We can hope so, eh? Here we go again with some new ideas, some new notes:
Histamine is chemically classified as an amine, an organic molecule based on the structure of ammonia (NH3). In humans histamine is found in nearly all tissues of the body, where it is stored primarily in the granules of tissue mast cells. The blood cells called basophils also harbour histamine-containing granules. Once released from its granules, histamine produces many varied effects within the body, including the contraction of smooth muscle tissues of the lungs, uterus, and stomach; the dilation of blood vessels, which increases permeability and lowers blood pressure; the stimulation of gastric acid secretion in the stomach; and the acceleration of heart rate. Histamine also serves as a neurotransmitter, carrying chemical messages between nerve cells.
Histamine, is a prominent contributor to allergic disease. Elevations in plasma or tissue histamine levels have been noted during anaphylaxis and experimental allergic responses of the skin, nose, and airways. Thus although histamine is only one of many mediators of allergic disease, it plays a primary role in allergic rhinitis, urticaria, anaphylaxis, and to a lesser degree, asthma.
Hypersensitivity reactions (HR) are immune responses that are exaggerated or inappropriate against an antigen or allergen. Coombs and Gell classified hypersensitivity reactions into four forms. Type I, type II, and type III hypersensitivity reactions are known as immediate hypersensitivity reactions (IHR) because they occur within 24 hours. Antibodies including IgE, IgM, and IgG mediate them. There are tests for these antibodies, however, our Family Doctor states that these tests aren’t as accurate as they could be, creating false positives.
Other classes of disease including histamine include Mast Cell Activation Disease, dietary and digestive considerations, neurological and psychological conditions, migraine, brain trauma, and more.
Apart from its central role in the mediation of allergic reactions, gastric acid secretion and inflammation in the periphery, histamine serves an important function as a neurotransmitter in the central nervous system. The central histamine system is involved in many brain functions such as arousal, control of pituitary hormone secretion, suppression of eating and cognitive functions.
The central histaminergic actions are mediated by H1, H2, H3 and H4 receptors. The histamine H3 receptor regulates the release of histamine and a number of other neurotransmitters and thereby plays a role in cognitive and homeostatic processes. Elevated histamine levels suppress seizure activities and appear to confer neuroprotection. So far, H3 receptor antagonists/inverse agonists have garnered a great deal of interest in view of their promising therapeutic properties in various CNS disorders including epilepsy and related neurotoxicity.
The role of the brain histaminergic system in neuroprotection remains a challenging area of research that is currently under consideration. Based on recent findings, which include changes in H1 and H3 receptor expression in a KA-induced epileptic model, it has been proposed that the brain histaminergic system is involved in experimental SE (status epilepticus) and subsequent neurodegeneration (Jin et al., 2005; Lintunen et al., 2005). (Ibid)
Histamine is considered to be an anticonvulsive neurotransmitter as its low levels are associated with convulsions and seizures (Kiviranta et al., 1995; Chen et al., 2003; Hirai et al., 2004). In the review referenced here, an attempt has been made to scrutinize the recent experimental evidence that has evoked the possibility that the histaminergic system, via modulation of H3 receptor function, can be engaged to mediate a neuroprotective effect in epilepsy-related neurotoxicity and also to address the possible mechanisms involved. (Ibid)
H3 receptor antagonists (particularly Pitolisant and Ayurvedic preparations) appear to possess both anticonvulsive and neuroprotective and/or disease modifying activity as suggested in numerous experimental findings. But this could also occur from a non-histaminergic mechanism. On the basis of the substantial experimental findings generated so far, H3 receptor antagonists can be envisaged as having a therapeutic effect on epileptic and associated neurodegenerative disorders. (Ibid)
So herein we find a correlation between histamine, allergic reactions, and epileptic-type disorders. Now I don’t have epilepsy per se, as determined by several EEG studies. But I definitely have a biologic if not neurologic basis for a Convulsion Disorder that worsens with several distinct triggers and physiologic/chemical factors, not the least of which is the recent exposure to a significant allergen. As soon as Luna settled into our home, it felt like many different systems in my body went haywire including itchy skin and the gastric upset. I had fewer symptoms when away from home for a treatment at our local hospital on Tuesday. Elle was a short-haired dog and Luna is long-haired, active, and came to us in heat. Hormones don’t typically make a dog more allergenic, however pheromones might do all kinds of crazy things. Luna certainly had more of a scent during her first 10 days with us than we recall Elle ever having, even after bathing Luna and as her heat cycle continued. Luna also weighs 10 pounds more than Elle. The earliest we can have her neutered, per our vet is about a month from now. I really don’t know how I would make it until then as I am definitely reacting to her right now! Anyways, getting a dog spayed doesn’t change the allergens that reportedly come from her fur and saliva.
All of this is to say is that there may be a scientific reason that I cannot turn off an allergic, histamine reaction that may exacerbate a neurologic condition when that trigger remains in our living environment. There is a possibility of a loading phenomenon that occurred over the decade of serious illness when Elle was with us. My body got overloaded with so many medical insults that we didn’t notice the hidden allergy; I did have other signs of system overloads such as shingles and chronic headaches. Then just recently, the headaches diminished significantly by changing to a low tyramine diet! Who knew this could happen? It’s very similar to a low oxalate diet but years on a LOD made no impact on daily headaches that had worsened over the past 2 years. I would wake up every day with my head pounding before even trying to get out of bed. Another take-away here is that things do change over time. For this reason we must be vigilant to keep observing, continue researching, change our treatment protocols, ask questions, and seek the best sources we can find for help again and again. Is there more to know even a decade later? Yes, there certainly can be. And when all is submitted to prayer, then I have found that the Great Physician can order my steps through the gift of the Holy Spirit. Renewal is always possible.
Right after Steve and I started putting some of this story together, made our decision to put her up for adoption, and made Luna available on the same animal rescue site in which we found her, Steve got an email from a wonderful family who wants to meet her. They sound just like us in many ways. Perhaps we can serve as the dog foster parents for a formerly sheltered pup who blossomed under our care. I wish you could meet her, Gentle Reader. She went from being terrified of everything and everyone to wagging that bushy, bushy tail when you approach her soft brown eyes and smile that nudges your hand to pet her just a little bit longer. Scratch my belly! Seeing her running alongside Steve as he cross-country skiis is an awesome sight to behold! I wonder what she will be like after she gets her vaccines and runs free at a dog park, lap after lap after lap. Oh Luna bean, I do believe your best days are ahead of you.
Ten years ago I was Divinely selected to endure an often horrific chronic illness. I trust that the Lord ordains this plan for my life for my highest good and perhaps something good for the people around me. Certainly there was much bad for me and for the people around me, especially my husband of 3 years at the time, Steve. A decade later I am not exactly sure where Steve is on things at the moment but for me my mindset remains: WHATEVER IT TAKES!!! But maybe not in the way that you might think it does.
We have endured much, Steve and I. The stress level was so high during the remediation of our home for mold in 2013 that one night we nearly breached the fatal blow of divorce. I stated that “I would not hurt me to love you.” We just stared at each other. I had been living in a hotel at the time which was during the 76 days I was away from home. We were hemorrhaging money trying to figure out what to do and each of us had different ideas that barely overlapped. My Doctor had prescribed both traditional and alternative medicine treatments, one of the latter of which had made my condition much worse only we didn’t know that at the time. Steve was travelling between the house and the hotel while his adult daughter chose to stay in the house. With full time work and other obligations ongoing for Steve, his stress level was visible, tangible. And then the work on our house was done and I was able to come home. But unfortunately, the daily violent convulsive episodes quickly ramped up again. We were exasperated. The hardwood floors in our home are still nice though.
Ten years of researching, doctoring, extensive medical testing and treatments, genetic coaching, physical rehabilitation, trips to major medical centers, supportive counseling, pharmaceutical grade supplements, science-based modalities, specialized and traditional dental interventions, and finally pain management have improved my quality of life. My worst symptom, the convulsive episodes, have diminished; there’s about one bad episode every 5 days now; tic attacks most days with at least one day per week without one at all. Score! Yay God! I still have to avoid most strong noxious sensory stimuli such as sustained loud noises of a certain pitch and some types of mold that grow inside buildings, homes. We practice a version of extreme avoidance to make our home (and travel trailer when on the road) as safe for me as possible. The ongoing re-testing and treatments are still very expensive, limiting our budget for other projects and interests. The ongoing whacks of illness are still very costly in terms of social engagements and recreation. I still sit home alone a lot more than before I got sick with a serious illness and yet the isolation is breaking somewhat as I learn to navigate some improvements in functioning. It’s a natural process. I feel better and do more. I feel sick and do less. Such is the life I have come to understand.
Then one Friday night came with a major setback. I had recently pursued pain management services and was prescribed a few interventions largely for neck and headache pain that have reduced my symptoms up to 50%. After experiencing headaches so bad for the past year (and earlier in this illness) that I couldn’t get out of bed, THIS IS HUGE!!! The progress is tenuous however. Just like any chiropractic care or physical therapy: the next seizure attack episode wrenches my neck so badly that the gains can diminish or even disappear. This happened again with the surgical nerve blocks about 6 weeks prior. Dang. The violent convulsive episode 2 nights after writing this blog was so bad that it erased all gains from the Pain Management clinic completely! Not only was I horrified by the violence and scope of the episode, I have a new whiplash, a new back injury with which to contend. I AM CRUSHED!!! It’s spring for crying out loud. I’m an Extension Master Gardener who uses her better days to get outside in the dirt or serve as Editor of our county Extension’s newsletter. It’s a real struggle at times but it’s my “job” right now. I still rarely get out for anything social or worship-oriented, however. The challenge has always been to figure out how I was going to do anything in the post-ictal/recovery phase of the daily episodes when I can’t even figure out how to get out of bed? I had a setback like this on Friday; it was that bad all day yesterday.
For some reason yet to be determined, Steve was 42 minutes late picking me up at the local grocery store. I had a minor tic episode about 3 hours earlier and was fatigued from the recently diagnosed dehydration and other abnormal labs, troubling symptoms. IV fluids and more labs were scheduled the next week. We really needed groceries so I talked with Steve about how I could get the shopping done and best manage my depleted energy levels. The plan was for him to drive me to the store and pick me up later. But for some reason our timing got way off. I was left standing in an exceedingly moldy entryway of the store, not realizing what was going on, exhausted plus trying to stay calm and manage the thirst and need to go to the bathroom that were increasing. I had forgotten my phone. He knew that. I felt vulnerable standing there as I was getting sicker, worried that I would have an episode in public. People came and went and I just stood there, checking for Steve in our truck about 18 times. Maybe he forgot me? I was panicking. Somehow I exchanged eye contact with a very friendly-looking woman leaving the store with her own full grocery cart and figured out how to say the words needed to ask her to use her cell phone. (Forgetting my phone should have been another clue that I should not have gone to the store for and hour and a half of shopping. Maybe I should have done the remote shopping service we had used in the past? I just didn’t want to use up my Saturday dealing with 2 weeks worth of a grocery order while my husband was away at a sporting event. I wanted a day-off too. But you don’t get a day off when battling a serious illness, even when in the slow-mo phase of what appears to be recovery.) I made the call on her phone. Steve arrived 24 minutes later. I raced back into the store to use the bathroom while he loaded the groceries into the truck.
My physical discomfort came down a notch as I walked from the store back out into the cool spring air to the truck. I hoped it was reviving me some for the chores to follow at home of dealing with the groceries and making something for us to eat. That’s not what was to be, however. My mind was clearing enough for it to register that I had been in a moldy foyer of the grocery store too long and that the continuous opening-and-closing of the automatic doors did not protect me from a major mold hit. I quickly became aware that I was in the pre-ictal phase: the ramp-up to a major convulsive event. My gait got stiffer as I honed in on the door of the truck just wanting to avoid tripping and falling in the darkness. Steve was holding the door open for me. I could not speak. I believe I thanked him. Maybe I didn’t.
What followed can only be described as a waking hell-on-earth. I don’t know why I have to be awake for these violent convulsive episodes but that is what happens for me. I would rather pass out and deal with a bump on my head than know the horror of the wretchedness of my limbs shaking in various combinations that ramps up to spontaneous vocalizations of terror, writhing like a child with severe cerebral palsy, then hanging like a limp doll until the next wave hits. Whiplash, repetitive motion injury, flare of painful peripheral neuropathy in my fingers and toes, back pain, gasps for air, inability to speak, loss of motor control (aka hemiparesis), and increased sensitivity to all 5 senses that can intensify the episode, filled the next hour or so. My body extended so stongly, it pushed me between the front seats and into the back passenger area. Finally I could sit in the front passenger area and Steve fastened my seat belt for me. I couldn’t use my hands that were involuntarily drawn up to my chest in a flexion posture. He drove us home as I continued to seize. I remember Steve opening the car door once we were in our driveway and asking me what he could do, what did I need? Somehow I blurted out that the frozen food, now thawed, needed to go in the freezer. My eyes were open, my eyes pulled closed then they were open again. My left arm was already useless then my right arm fell lifeless off my lap and into the space near the seat belt and out the open door of the truck. The cool spring air blew over me and I was simultaneously chilled, re-awakened, and glad for my choice to wear flannel-lined jeans. The jeans kept me warm. Steve left my door open as he unpacked the groceries. The tears flowed and my face became a mess with snot and tears. It all burned on the skin of my face: another hypersensitivity anomaly. My mind moved in slow-motion, desperately trying to assess the situation, this medical crisis, from every possible angle. Most importantly I begged the question in my mind: how the hell do I make this nightmare stop! I prayed.
Many minutes passed. I couldn’t hold up my head any longer. It fell forward creating even more of a neck strain and worry about how I was going to continue to breathe let alone deal with the increased pain that would surely follow. I now have pain medications to take for specific symptoms but my liver enzymes are elevated. I have been cautious to only take a drug when absolutely necessary. The only “alternative” method that works is icing so I do that every night. But in that moment I couldn’t do anything but try to keep breathing and hope Steve didn’t accidentally close the door on my ankle dangling off the side of the floor board, out the door. I prayed some more. I always do in these moments, pleading for the Lord’s mercy. As during many times before, I asked for wisdom even on how to wipe my nose to stop the burning feeling on my upper lip. Maybe I could twist my torso in an attempt to reach my arm to wipe my face with my sleeve? I thought it was the last bastion of function left in my battered frame. Big mistake. The episode ramped up to a whole new level of hell as my torso extended, twisted and writhed to the left, sliding me off the backrest of the passenger’s seat AGAIN and into the space between the front seats. My head hung overstretched into the backside of the driver’s seat. I couldn’t stop it. Any of it. This new neck injury further crushed my spirits. And all I could do was hold on and try to breathe some more . . .
For those of you trying to do an armchair diagnostic workup at this point in my story, please stop. Thank you for your care and concern. I’ve seen the best medical providers in the country and completed all of their recommendations. And here I am. My own research led by the Lord and all I have learned from these professionals has brought me the most effective improvements overall. Please just pray for me and Steve. The Lord knows.
Eventually my beaten frame settled back into the front passenger’s seat and I was able to open my eyes, to breathe somewhat freely again albeit labored. I searched my frame and shifted my torso for signs of life in my limbs. Could I move my arms and legs yet? At this point probably 45 minutes had passed since the episode had begun. Steve had asked twice if I wanted him to carry me into the house. I couldn’t reply. My thoughts went elsewhere. I was aware of what was happening and the circumstances leading up to them yet not sure enough of the reason why Steve was late; I didn’t want him touching me just yet. I needed him but didn’t want his help. I was upset at so many levels and my remaining shred of personal dignity required me to find my own way to get into the house. I reviewed the steps over and over in my mind of how to ambulate into the garage, what I could use for support, how to disrobe for a shower, then how to wash off any mold residue on me into the cleansing comfort of a long, warm shower. By the grace of God I was able to advance my left leg by dragging it as I pulled myself out of the truck, limped into the garage then house, drag my dead leg down the hall, and get into the shower. I was so very weak. The pain was excruciating throughout my beaten frame. What is going on? I thought I was getting better? I had endured several mold hits in April in Florida and yes, had some minor episodes but NOTHING LIKE THIS ONE!!! Perhaps my seizure threshold had gone way down with the repeated exposures during that trip. WTF? This far down? I don’t get it. Eventually I lost it and could not hold back my angst any longer. No matter how many incidents like this we endure, each one is difficult for both of us and traumatizing for me. Please pray for us. This serious illness is really, really hard for both of us to live with, to try to live around.
Another thing is as clear for me that Friday as it was in 2013: I will endure whatever it takes to fulfill the purpose the Lord has for my life, no matter the level of suffering or loss, no matter what it takes. Each major “hit” like the one shared above challenges everything I know about life and death, love and hate, Divine Providence vs self-determination, the Lord’s provision, the economy of time in our finite lifetimes, and the question about where the heck did my serenity go if it can leave so quickly? At times of crisis I am ready to run away. Then wonder where would I go? We take ourselves with us when we run away, which includes virtually all of our problems with us wherever we land. It’s like the yellow felt banner painted in purple letters in the office of a counselor I knew in 1983 that read, “Bloom where you are planted.” Funny to recall this now. That was long before I would ever get into gardening. But even back then it was decades into living through the tragic hardships of my childhood and young adulthood. I did try to run away from my problems at home after I finished college. Turns out about a year and one-half later after I moved out of State I realized that I had taken most of them with me! The dysfunctional dynamics of my biological family were reflected in the relationships that filled my “new life” 300 miles away. How is that even possible? So much seemingly had changed. I took the geographical cure, right? Wrong. That’s just the way it works when you “do what it takes” to try to improve your life without first surrendering those dreams to the Lord, Jesus Christ. He knows the desires of your heart and has a Diving plan for our lives. Flash forward about 4 decades and He has fulfilled more of those dreams for me than I could have ever imagined. My life is better overall than I ever dreamed could be. I didn’t know Jesus back then. I know Jesus now. And life is still really hard at times.
To do whatever it takes to stop wretched convulsive episodes is not the most important task in the overall view of my life. Friday night I was in survival mode. I/we did whatever we had to do to get through it and will do the same to deal with the aftermath. Perhaps you get what survival mode is like? Sometimes we must focus on the task directly in front of us and simply HOLD ON. We have to make the hard decisions to cut the cancer out, end the abusive relationship, quit the job that puts our professional license in jeopardy, sacrifice resources usually spent on pleasures for medication or emergency food supplies instead, and move out of state to find yourself, to find Jesus. When those decisions are rendered unto the Lord, He will bless them and ultimately use them for His glory. We will be fulfilled beyond our wildest dreams. The pain of the suffering will diminish while the lasting joy of walking everyday with the Lord magnifies. And when we need to grieve, crash on our bed of sickness, the Lord Himself will meet us there in a tender embrace. He did that for me today at 3:30 in the morning on the day I described above. I had almost built that wall between Steve and I in my heart that we faced in 2013. I was ready to run away again or worse. The pain of the incident that Friday, the trauma of what had happened AGAIN, the loss of nearly 2 days afterwards trying to recover/manage the physical and emotional hurt, the burden of tasks not completed, and the lack of clarity of what to do from there are all just too much to bear alone. But I do know from past experience that I can separate my feelings from my faith. My faith is stronger. My trust in the Lord has been built over many tragedies that I have been entrusted to endure. Yes, it’s a kind of stewardship. What will I do with what has been ordained for my life, the good, the bad, and the ugly? Perhaps I will know someday.
With weakness I shall go forth. With a once baby faith that now roars like a lion I will trust that the Lord will lead me, give me what I need to live. It’s only in His strength that I have gotten through thousands of episodes just like the one described many times at Hope Beyond; any one of them could have killed me but didn’t. I survived. And having said that Gentle Reader, I will thrive from this day forward as unto the Lord. It just looks and feels a little different than it may look and feel for someone else, perhaps for you. Keep looking to the face of Jesus, little Julie. Keep looking at Him. You too Gentle Reader. We can do this if we but follow Him. It will all make sense one day. He promised. JJ
P.S. Steve and I worked things out. It was hard. We did it. Some better days followed and for that we are grateful. We are grateful for so very much . . .
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