Celebrating Progress
This month, I celebrated my birthday on October 1, marking another year in my healing journey toward a ClusterWele lifestyle and recovery from a Traumatic Brain Injury (TBI) since August 4, 2016. I am filled with gratitude for the "Million Little Miracles" in my life, as beautifully expressed in a song by Elevation Worship. My faith inspires me to prioritize health and family while striving to make a meaningful impact within my community. My Inspirational Song “Rise Up” – Andrea Day – “I can do all things through Christ who strengthens me" (Philippians 4:13) A New Hope
Fast forward to 2023: I found a neurologist team, PA Kate, specializing in cluster headaches. Her goal was to get me an M16 oxygen tank with a 15-liter flow, a necessity for effective treatment based on my
research from clusterbuster.org and *Cluster Headache Attacks* by Ashley Hattle. Despite her best efforts, she expressed concerns about the difficulties of getting insurance approval for the M16 (15liter
flow) oxygen tanks.
Oxygen Therapy Facts
Tank Mechanism: Oxygen therapy helps alleviate cluster headache pain by vasoconstricting blood vessels and increasing brain oxygen levels. You must use the SPECIAL DESIGNED MASK.
High-Flow Efficacy: Administering high-flow oxygen (7-15+ liters per minute) can effectively treat acute attacks. BEWARE: Oxygen Concentrators DO NOT WORK.
Rapid Relief: Patients often experience significant pain relief within 15 minutes of starting
oxygen therapy.
Success Rate: Studies show that oxygen therapy provides relief for 70-80% of cluster headache sufferers when used at the onset of an attack.
Safety: Oxygen therapy is generally safe, with few side effects, such as mild throat irritation.
Cost-Effective: Compared to other treatments, oxygen therapy can be more economical in
managing cluster headaches.
Combination Use: It is often combined with preventive treatments, like triptans, verapamil,
Emgality (just to name a few) for enhanced effectiveness.
With an average of 25 headache days a month, I felt defeated. We tried various preventive medications, including Sumatriptan Nasal Spray and Emgality injections, but they came with significant drawbacks and high costs. However, I am currently utilizing both prevent meds with oxygen therapy.
My Inspirational Song My faith walk during this season of my ClusterWele journey resonates with the song "He Knows My Name" by Tasha Cobbs Leonard.
A Turning Point
This year has been particularly challenging, but I found strength in prayer during a church initiative called "PRAY21." On August 14, while accompanying a friend for vitamin IV therapy, I learned that they offered oxygen therapy. Excitedly, I discovered they could provide a 15-liter flow! After 20 minutes of oxygen therapy, I enjoyed five days without a cluster headache—my first extended pain-free period in eight years.
However, that hope was short-lived when I learned that the Hydrated Infusion center could only approve a maximum 2 liters flow. I continued to hold on to faith, believing there was a solution out there.
Statistics
Prevalence: Cluster headaches affect approximately 0.1% to 0.4% of the population. Age ofn Onset: Average onset is between 20 and 40 years, with men affected three times more than women.
Attack Duration: Attacks can last from 15 minutes to three hours, often occurring in clusters for
weeks to months.
Headache Days: Many sufferers experience 1-8 attacks per day during cluster cycles, totaling up
to 25 headache days a month.
Quality of Life: A significant percentage report reduced quality of life due to the severity (aka
suicide headache) and frequency of their headaches.
Finding Oxygen Provider
Determined, I revisited Ashley Hattle's book *Cluster Headache Attacks* and found a resource listing oxygen providers in the U.S. (www.homeoxygencompanies.com). I discovered four local providers in North Carolina, but my initial contacts were discouraging.
Finally, I reached out to Apria HealthCare, where the representative, Amber, excitedly confirmed they
provide oxygen for cluster headache patients. She requested my doctor fax over a prescription, and I felt a wave of relief wash over me.
Essential Tips to Secure Oxygen Therapy
Research: Use websites like www.homeoxygencompanies.com and clusterbuster.org to locate local oxygen therapy suppliers and relevant information and resources on oxygen therapy.
Consult Your Doctor: Discuss your need for oxygen therapy with your physician, who can
provide guidance and write prescriptions.
Be Prepared: Gather necessary medical records and insurance communications while reviewing your policy to understand your oxygen therapy benefits.
Advocate for Yourself: Follow up with your insurance and suppliers to ensure your requests are processed.
Document Symptoms: Keep a record of how headaches affect your daily life to support your case.
Join Support Groups: Connect with other patients for advice on navigating the oxygen therapy process.
Be Persistent: If your request is denied, appeal the decision with additional documentation and explore secondary insurance or assistance programs for potential coverage options.
Stay Informed: Keep updated on oxygen therapy research to strengthen your access efforts.
The Delivery
On August 27, I received a call to schedule my oxygen M16 tank delivery for September 1. Despite a late delivery, my tank and specialized mask finally arrived!
My Inspirational Song As Koryn Hawthorne sings, "Look At God," I felt overwhelmed with gratitude.
Today, I feel empowered and hopeful, continuing to navigate my pain management journey. I am still navigating the trial and error of finding what works best for my pain relief management routine for my ClusterWele lifestyle. The Oxygen Way (M16 tank/Mask) to help my cluster headache pain relief was one of the missing pieces I had been searching for. To all my fellow cluster headache warriors: DO NOT GIVE UP! Pain Relief is Possible on this ClusterWele journey.
My Inspirational Song I feel like a conqueror, as Estelle sings in "More Than Conqueror."
Reach out to me at rcowan@wellness.com if you would like some more information. Also, check out my website, wellnessofme.com, the ClusterWele page.
“Resilience is in the Journey”
Rhonda C.
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