“In less than a month, I have gone from headaches every day and fifteen migraines a month to two headaches and zero migraines in a month. I have a newfound energy. My mind feels so calm. No more emotional tantrums and no more uncontrollable desires to not exist.”
A couple of weeks after coming to POTS Care, Jonathan wrote this amazing letter about his struggles with an invisible illness and his journey to find answers. Keep reading to find out what happens AFTER Jonathan left POTS Care. How is he doing today??
I noticed I was abnormal around 13. I was built differently than the other boys. I had a small frame and dark circles under my eyes that looked like eyeliner. I felt really misunderstood because I was prone to fits or bursts of emotion so strong it was physically devastating. I can remember screaming “Stop, stop you’re hurting me “ when someone would do something that made me anxious. This felt like they were hitting me with a hammer. When these fits would arise, I would often bash my head into walls or hard objects or try and suffocate myself. I knew at a young age that if I could just knock myself unconscious that the pain and rage would be gone when I came to.
Fatigue and radical emotional behavior characterized my teenage years. My outburst coupled with suicidal behavior landed me kicked out of several organizations and placed in the chairs of psych professionals. By 16 I had discovered that abusing high doses of amphetamines and alcohol could give me the armor I needed to survive emotional stimuli while having the energy to function.
By 19 my drug and alcohol use had escalated to the point that I couldn’t function at school or in the workforce. Even if I got the drugs I needed to survive the day emotionally, the urge to take care of myself just wasn’t there. My drinking, like my childhood, was painted with fits of rage and aggression. I often woke up handcuffed to a hospital bed.
I got sober and had a radical conversion to Christianity. Things got better for a time. I was still suicidal and I was still too tired to have a normal life. I accepted that and it was fine. I had found something worth living for. I dove in headfirst to pursuing avenues in which I could help other addicts and alcoholics. This passion and the rewards from it were enough to sustain me emotionally. I hobbled through.
Around 24 my hobbled crutch wasn’t enough anymore. I began experiencing stronger emotional fits than before and strange fainting spells. The dizziness and speckled vision I had from childhood turned from a mild nuisance to an ever-present discomfort. Joints were fully dislocating while I was sleeping. The entire right side of my body felt pain and inflammation day and night. I was losing weight rapidly and began to look very ill.
I powered through and figured it was just a phase. I had never heard of hyper-mobility disorders or POTS. On a rare occasion, a family member or friend guilted me into seeing a doctor but it was always the same. Run every normal test past a regiment of doctors and have them all come back normal and get sent home with a steroid shot and a prescription for disappointment.
This was the beginning of the end. At 26 a hopeless undiagnosable situation would change rapidly over 6 months. What seemed at the time a string of strange coincidences proved to be the firm and loving hand of a God who is there. I had a change in my shift after college. This had me working 3 times with a med school drop out nurse. He was brilliant and knowledgeable but a little scatterbrained. He was fascinated by obscure medical conditions. Hoofbeats meant zebras and never horses to this guy. He proposed to me that I may have a hypermobility disorder causing POTS. This guy in 20 minutes nailed what doctors had missed for 20 years because he was willing to consider the abnormal yet plausible.
I was still skeptical of this diagnosis and sat on it for a few months. I read up on hypermobility disorders and made my family aware of my suspicions. During one particularly bad spell of not being out of bed for 3 days, I came across Dr. Driscoll’s book on amazon. The synopsis promised a life without pain and with near-normal functionality. I cried, but not because I had found the cure. I cried because I was so desperate for what she offered and knowing that she was probably some snake oil scam artist I was about to have my heartbroken. I wiped my tears and began reading her book anyway. I was desperate and I couldn’t get out of bed to do something else anyway so it was better than counting my ceiling tiles again.
I was on every page. My life, my story, my illness. She suggested I try certain antihistamines during flare-ups. I did as the book suggested and in an hour I was able to get out of bed and my inflammation was low enough that my carpal tunnel had gone away. I was still skeptical but I had to pursue this farther. I decided to get my dad’s advice since he is an O.D. like Dr. Driscoll. The stars kept aligning. My dad said I had to pursue this and that he had Dr. Driscoll’s email. He reached out to Dr. Driscoll’s husband who put us in touch with Diana.
A month later I was at POTS Care. I was still skeptical that this would help but I was so desperate that I knew I had to try. I had the support of my family so I knew I wasn’t just delusional. My expectations were dramatically exceeded.
In less than a month, I have gone from headaches every day and fifteen migraines a month to two headaches and zero migraines in a month. I have a newfound energy. My mind feels so calm. No more emotional tantrums and no more uncontrollable desires to not exist. In my sickness, I had lost my ability to fully pursue my helping of addicts. Only 3 weeks out of POTS Care I was able to drive an hour away and speak at a center for addicted youth. The month before POTS Care I couldn’t go more than a block from my home much less do public speaking.
I feel like I’m learning to pilot a whole new mind and body. It’s fantastic. I’m so grateful to POTS Care, the zebra hunting nurse, and God, for giving me this opportunity. My greatest fear now is that I squander this opportunity and lose my gratitude for it. I was given this gift so that I could be healthy enough to help others and if I ever forget that I’ll be more lost than when I was sick.
