Living Beyond the Diagnosis

Living with Multiple System Atrophy (MSA) is a daily struggle. As someone who has been on this difficult journey for over 2 years, I want to share my experience with a dominant symptom that has profoundly impacted my life: Orthostatic Hypotension (OH). For those who may not be familiar, OH is a condition where your blood pressure drops significantly when you stand up, leading to dizziness, lightheadedness, and sometimes fainting.

In my case, OH has been the most crippling symptom. Imagine trying to go about your daily activities—simple tasks like getting out of bed, taking a shower, or even just standing up to cook a meal—only to be hit with a wave of dizziness or, worse, to lose consciousness. It’s not just inconvenient; it’s terrifying and dangerous.

MSA brings a host of other challenging symptoms, from muscle rigidity and tremors to problems with balance and coordination. However, the unpredictability and severity of my OH episodes made it the most debilitating aspect of my condition. I used to experience these episodes daily, significantly limiting my ability to walk and perform routine activities.

But there’s a silver lining I want to share, and it comes from my CVAC therapy. For those who may not have heard of it, CVAC (Cyclic Variations in Adaptive Conditioning) therapy is a non-invasive treatment that uses a pod-like chamber to create changes in air pressure, temperature, and oxygen levels, aiming to stimulate the body’s adaptive responses.

When I started CVAC therapy, my primary goal was to improve my mobility. I hoped that by enhancing my body’s overall function, I might find some relief from the stiffness and difficulty walking that MSA had imposed on me. What I didn’t expect was the improvement in my OH symptoms. Since beginning CVAC therapy, I haven’t had a single episode of orthostatic hypotension. For someone who lived with the daily fear of collapsing every time I stood up, this has been a God send.

I’m not here to give medical advice—every person’s experience with MSA is unique, and what works for one may not work for another. However, I felt compelled to share my journey because I know how isolating and challenging this condition can be. If you’re struggling with OH or other symptoms of MSA, I encourage you to explore different treatment options and talk to your healthcare provider about what might be right for you.

CVAC therapy has given me a newfound sense of stability and freedom. It has allowed me to regain some control over my life and has drastically reduced my fear of standing up and moving around. If my story can offer even a glimmer of hope or a new avenue to explore, then sharing it has been worthwhile.

If you want more information on CVAC in your area, comment below, or reach out Admin@FuckMSA.com

Stay strong, stay hopeful, and know that you’re not alone in this journey.

Warmest regards,

~Coach~