Our purpose in sharing Michael's story is to help us . . .
🔹 Promptly share his medical story as we continue to seek a resolution,
🔹 Share things we have learned along the way, and
🔹 Heighten awareness of his condition in hopes one day we can serve others!
🙏Please help us share Michael's story! Whether we find an answer for Michael or we are able to bless someone else on the same or similar journey, your connection may make the world of difference!
⚕️ Can Michael be the only one with these symptoms? As a researcher by nature, I have spent countless hours reviewing published medical journals, public case studies, blogs, blog comments, Facebook, Reddit, what feels like all the interwebs... pursuing rabbit holes in hopes of an unconventional answer to no avail. So, here we are now taking up our corner of the web and maybe you can help lead us to an answer.
🔽 Below you'll find some helpful Jump-To links from the Who Are We to Michael's Case Overview and Current Daily Life.
💙 He said... Haddie - she's my North, a total nerd, has a heart of gold yet is so driven she's got a slightly savage streak. I met her for the over a decade ago stranded and under the hood of her hobby truck with her puppy Zona, both covered in oil. Her love of research and winning solutions continue unencumbered.
💙 She said... Michael who happens to go by 100 nicknames... Cap'n, Dutch, Mick, Mickie, Mikie,... the list goes on. Mike is the salt of the earth, charming, hard-working, wonderfully loyal, dedicated - a total love and highly charismatic to boot. He possesses an admirable ability to positivity uplift everyone around him. Michael is simply a blessing. Normally, he’s sure always ready for an adventure. Dutch still is my man in shiny armor!
💙 They said... In early 2020 we would share that we are an active, young professional couple preparing to expand our family. During the week we invested time in the financial services industry and in our free time enjoyed life. We filled our time capturing memories and chasing the Arizona sun - entertaining family and friends, hiking, playing with the K9s, DIY home projects to volunteering and supporting our local community -or watering hole.
️❤️ In the wake of 11/30/2020, the trajectory of our lives forever shifted. A morning otherwise like all others, where Michael awoke before his alarm, except this morning his early rising was prompted by excruciating, intense, stabbing pain radiating from the base of his skull in the occipital lobe area into his left eye. In an overarching review of his case, you'll find in pursuit of remission we have only continued to adversely increase his pain threshold.
🔹 Michael woke the morning of 11/30/2020 to the onset of severe refractory migraine, intensive conventional and complimentary medicinal with integrative approaches of pathology, and management trials continue without any relief. The persistent headache fails to respond to any and all treatment including aggressive treatments.
🔹 Michael is otherwise, a very healthy, active and unmedicated 40-year-old man who visited the gym daily, maintained an active physique with whole food diet and general supportive supplements to fill in nutrition gaps (i.e., fish oil).
Initial Case Presentation
🔹Initial case presented with severe, sharp, unrelenting pain internal and external (i.e., to light touch) in base of his skull area. The pain favors the rear right side which radiates through the left eye as if the occipital nerve was 'pulling' from the rear of his head into his eye. Speech was slow, slurred and extreme cognitive fog presented. He unwillingly held left eye kept closed due to intense tugging pain behind eye when he opened his eye. Vision became strongly blurred and tongue falling unilaterally to left. Subsequent testing has continued to rule out stroke, concussion or any other causation. Innumerous, successive treatments have purely increased pain threshold.
Outstanding Causation in Research
🔹 The outstanding question for causation continues to point us back to his reverse vasectomy procedure in 2016. It was after this procedure where Michael began to have similar migraines. These past migraines presented with sharp migraine pain in the lower area of his head such as a basilar-type migraine. These migraines were made worse with triptans, like Maxalt. They instead resolved on their own in 2-4 days with reduction of sharpness from use of Excedrin (acetaminophen + caffeine). Occurrences seemed random and the migraine would occur two or three times a year.
Beacons the question we've continued to ask... is it possible that his post-reverse vasectomy had lead to unrelenting years of hemicrania continua, blindness, insomnia and more?
🔹 We continue to be inspired in this area of research, but have been unable to find adequate medical attention in this area. While handfuls of physicians along with our research continue support this hypothesis - addressing hormone stuff is tough. Unfortunately, we are still searching for an endocrinologist who is willing to spend time more than 3 to 7 minutes with us.
🔹Michael's care has included: preventative migraine medications and supplements in all forms, abortive migraine medications and supplements, muscle relaxers, selective serotonin reuptake inhibitors (SSRIs - antidepressants), benzodiazepines drugs (anti-anxiety), neuroleptic drugs (anti-psychotics blocking dopamine receptors), low-blood pressure medications, Botox, calcitonin gene-related Peptide receptor antagonists (CGRP, such as Aimovig and Emgality), sleep-aids, prostate medications, CPAP, anti-nausea, and... the list goes on.
🔹All medications and/or supplements have ended and yielded no results with trials spanning over several months and generally reaching dose titration to max load.
🔹Unsuccessful procedures include blood patch (trial for any possible CSF leak), hospital-administered DHEA and ketamine. Health history includes vasectomy (2004) and reverse vasectomy (2016), generalized anxiety disorder (2018), PTSD, smoking (cessation 10+ years ago.)
🔹Significant provocations have included DHEA, sumatriptan, nerve blocker/trigger point injections and external VNS. Urinary issues ensued after ketamine treatment which resolved after 9 months with additional medical intervention.
🔹Nerve block and trigger point injections were introduced 01/26/2021 which drastically increased pain threshold. With these injections daily vomiting ensued and is refractory averaging 6-10hrs per day.
Medical Approaches and Tests
🔹Approaches from Botox, hospital administered ketamine and DHEA, sinus and allergy, innumerous migraine medications (triptans, pain relievers, opioids), medical marijuana, antipsychotic, anti-depressants, anti-anxiety medications, CGRP antagonists - Aimovig and Emgality, mental health therapists, pain specialists, traditional Chinese medicine, functional medicine, physical therapists with focus in parasympathetic re-alignment and manual cervical traction.
🔹Pathology, microbiology, and imagery all unremarkable to date. Lumbar puncture, micronutrients panel, endocrine panel, tilt table test, infectious disease panel, rare metal panels, ophthalmology reviews, MRI/MVR, MRI w+wo contrast spine L-C-T, angio neck, angio head venous, XR chest and CT w contrast angio neck.
Care Focus (per physician direction)
🔹As of August 2021, we were advised care would shift to focus on palliative care - focus on symptoms not root cause and reversal. We continue to find zero success in all treatments, if not adverse and further negative impact.
🔹In June 2021 Michael was left with a New Daily Persistent Headache 'diagnosis' based on no other primary or secondary migraine fitting his symptoms. We were further advised: "he will just wake up one day and it would just... go away. In cases (they've) seen it averages three to five years..."
Current Daily Life
🔹Michael is in a constant high state of physical and cognitive exhaustion and pain which causes extreme insomnia, immense nausea and vomiting. Since the 11/30/2020 on Michael has lost 70 pounds. He is able to eat about 1,000 to 1,500 calories a day which is under basal metabolic rate. Eating is somewhat forcibly due to constant nausea and food aversions.
🔹Due to constant excruciating pain and nausea, he is unable to sleep more than 1.5 hours a day. although he is in bed resting for 10 to 12 hours a day from extreme fatigue - cannot function, yet cannot sleep. His pain further causes him to vomit for 6-8hrs every single day. His vomiting is unprovoked and incredibly cyclical occurring nearly like clockwork from 1AM - 8AM each day. These nightly episodes are terribly violent, it is as if he has a mini-flu episode with intense chills, to fever-like sweats and uncontrollable shaking.
🔹Vision from left eye remains severely blinded with visibility of light direction and gray shades, however he can now keep his eye open without pain. Does have sensory hallucinations, tinnitus and gets sick in car rides more than 5 minutes.
🔹Cognitively, Michael is limited and can only partake in active conversations which might require decisions for 15 minutes a day. While he sustainably listen for about 30 minutes a day and successfully intake information.
🔹Physically, he chooses to do as much as he can every day to stay active. This includes walking up and down the stairs in our home at least 6-10 times a day, walking to and from our mailbox across the roadway and playing with the dogs (throwing ball or frisbee). He also has a round of physical therapy exercises he completes daily to continue training which are post-concussion exercises for eye-hand coordination and balance focused.
How can you help?
🔹 Please share Michael's story! Our network in Phoenix, AZ continues to spiderweb through local medical providers. While Michael is severely physically limited in travel, most initial and some follow up visits can be performed over Zoom. Your connection could be our saving grace!
Do you have a similar situation?
🔹 We would love to hear from you to learn more about your story!